tag:blogger.com,1999:blog-193125672024-03-13T04:04:23.227-04:00Caregivingly Yours, MS Spouse CaregiverSharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.comBlogger1259125tag:blogger.com,1999:blog-19312567.post-59329459042666181202013-10-22T20:37:00.000-04:002013-10-22T20:37:18.023-04:00Update about updatesStill Megan posting, but dad wanted to let you all know that small updates will be posted periodically at his facebook page until he can get to a full screen computer and post these himself.<div>
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<a href="https://www.facebook.com/patrick.leer" target="_blank">See them here</a>.</div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com24tag:blogger.com,1999:blog-19312567.post-78647295482124357112013-10-08T23:41:00.001-04:002013-10-08T23:41:58.498-04:00Caregivers Make the Worst Caregivees<span style="font-size: large;">First thing's first, this is not Patrick writing any of this! I asked my father for permission to update his blogs for him while he's temporarily unable to.</span><br />
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<span style="font-size: large;">As regular readers are aware, he's been going through some aggressive chemotherapy for his lung cancer. After the fifth round he managed to catch pneumonia from somewhere, and had to be taken to the hospital when he was too weak to lift himself out of a chair. Something like that is scary enough for a regular person, but maybe more so for a long time caregiver. </span><br />
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<span style="font-size: large;">It was a rough couple of days, but the antibiotics finally began working and his body is still fighting off the infection now, on top of the chemo and the cancer. The main concern is that he has become very weak, and needs help doing nearly everything.</span><br />
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<span style="font-size: large;">He's said since the start that parts of cancer and chemo have helped him better understand parts of my mom's disease, and I can only imagine that's even more true now. But I wouldn't want to speculate too much and end up stealing away a future post my dad would prefer to make himself!</span><br />
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<span style="font-size: large;">When he'll be able to do that is up in the air. The hospital wants to discharge him to a facility equipped to handle inpatient physical therapy with the goal of returning home. And my mom's care facility happens to have such facilities! </span><br />
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<span style="font-size: large;">Now, whether or not our insurance will approve of that has yet to be seen, and whether it would even be the best fit for the kind of physical therapy he needs, I have to admit my fingers are crossed for him to spend a little vacation time there. Potentially being able to see my mom daily again could be interesting for the both of them.</span><br />
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<span style="font-size: large;">I promise to read all comments to him while he's out of action, spambots included, so don't be shy.</span><br />
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<i>-Megan</i><br />
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<br />Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com21tag:blogger.com,1999:blog-19312567.post-48357543310519978222013-08-26T15:16:00.000-04:002013-08-26T20:35:31.706-04:00The end of an era – accessible transportation<span style="font-size: large;">Facing an estimate of $1,500 in repairs to pass Pennsylvania inspection … our personal wheelchair accessible van era may end this week and it's not just the money … </span><br />
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<span style="font-size: large;">… Since beginning 'aggressive chemotherapy' almost 12 weeks ago, I can no longer lift or transfer Patti due to fatigue from chemotherapy to combat Stage 4 Lung Cancer. (<a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: blue;">My Lung Cancer Odyssey</span></a>)… NO more ‘off road’ wheelchair pushing through accessible trails. … basically no more ‘physical caregiving’ on my part ... take physical caregiving out of the equation and is an 11 yr old van with 160,000 miles worth it?</span><br />
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<a href="http://1.bp.blogspot.com/-P3Z9PnnNKNQ/UhuoB78IS4I/AAAAAAAANsc/M-37Gnz21ns/s1600/endofera.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="268" src="http://1.bp.blogspot.com/-P3Z9PnnNKNQ/UhuoB78IS4I/AAAAAAAANsc/M-37Gnz21ns/s400/endofera.jpg" width="400" /></a></div>
<span style="font-size: large;">Last week sitting in the chemo lounge I watched a couple use ‘the hug’ – one person unassisted transfer from recliner to wheelchair with healthy spouse transferring chemo fatigued spouse … how many times have I done that through the decades … hundreds? … thousands? … the key word here is ‘healthy’ spouse ... and I can no longer qualify as the healthy spouse.</span><br />
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<span style="font-size: large;">When operating a wheelchair accessible van one must still need to be able to lift or transfer your passenger as a failsafe. … Even my visits to Patti’s care facility have been seriously impaired by my chemo reduced immune system.</span><br />
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<span style="font-size: large;">Visiting is down almost 2/3 for me … </span><br />
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<span style="font-size: large;">Does fighting to outlive Stage 4 Lung Cancer trump a quarter century priority for spouse caregiving for Multiple Sclerosis? … Most days I awake to find myself so conflicted that I am alive and fighting to outlive lung cancer … yet ‘hands on’ involvement with Patti’s care declines.</span><br />
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<span style="font-size: large;"> … her MS related dementia impairs her awareness of any of these changes … she rarely remembers I even have lung cancer much less am fighting to outlive it.</span><br />
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<span style="font-size: large;">Patti did not choose Multiple Sclerosis any more than I chose Lung Cancer … however a quarter century ago I chose to juggle spouse caregiving and basically single parenting ... now we enter a yet another new era in living with MS as a Family…</span><br />
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<span style="font-size: large;">A dear friend sent me a note of encouragement from the poet Audre Lorde …</span><br />
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<span style="font-size: large;"><i>“I have come to believe that caring for myself is not self-indulgent. </i></span></div>
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<span style="font-size: large;"><i>Caring for myself is an act of survival.”</i></span></div>
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<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
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<span style="background-color: white; color: #222222; font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br />
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<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" style="color: #1155cc;" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
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My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" style="color: #1155cc;" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com13tag:blogger.com,1999:blog-19312567.post-73803315036812250262013-08-14T08:28:00.000-04:002013-08-14T08:28:48.969-04:00Mammograms vs Thermograms<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>“Sitting in the waiting room I listened as Patti reinvented the boundaries of cursing, swearing and yelling even with her own daughter trying to help before another mammogram bit the dust ..."</i></span></div>
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<span style="color: blue; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="line-height: 24.16666603088379px;"><b><a href="http://multiplesclerosis.net/blog/mammograms-vs-thermograms/" target="_blank">Mammograms vs Thermograms</a></b></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 24.16666603088379px;">FEATURE Posted by Patrick Leer - August 13th, 2013</span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="line-height: 24.16666603088379px;">Thank you <a href="http://multiplesclerosis.net/"><span style="color: blue;">http://multiplesclerosis.net/</span></a> for the opportunity to share our story. </span></span></div>
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--<br /><span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
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<span style="background-color: white; color: #222222; font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br style="background-color: white; color: #222222; font-family: arial; font-size: small;" /><div style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" style="color: #1155cc;" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
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My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" style="color: #1155cc;" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com7tag:blogger.com,1999:blog-19312567.post-64631214258098291672013-08-10T17:55:00.002-04:002013-08-10T17:55:39.800-04:00Palliative Care, Hospice, and MS<span style="font-size: large;"><i>"Palliative Care does not leap out as something associated with MS. </i></span><br />
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<span style="font-size: large;"><i>Yet in reality ‘palliative care’ is medical care provided by physicians, nurses and social workers that specializes in the relief of the pain, symptoms, and stress of serious illness ….”</i></span><br />
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<span style="color: blue; font-size: large;"><a href="http://multiplesclerosis.net/living-with-ms/end-stage-multiple-sclerosis/" target="_blank"><b>Palliative Care, Hospice, and MS</b></a></span></div>
<span style="font-size: large;">Posted by Patrick Leer—August 8th, 2013</span><br />
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<span style="font-size: large;"><i>"... Obviously there will come a point when you will need to have conversations one way or another about palliative care, hospice, and dying regardless of what your diagnosis is.</i></span><br />
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<span style="font-size: large;"><i>As a caregiver this might be the one surprise you are not prepared for, after all MS is not considered a fatal disease! And your spouse has mild MS or is using disease modifying drugs…. Don’t let yours become intimidated by stigmas or wait too long. Get the facts in your State.</i></span><br />
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<span style="font-size: large;"><i>As a caregiver you are no more guaranteed tomorrow than the MS person you care for.”</i></span><br />
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<span style="font-size: large;">Thank you </span><a href="http://multiplesclerosis.net/" style="font-size: x-large;"><span style="color: blue;">http://multiplesclerosis.net/</span></a><span style="font-size: large;"> for the opportunity to share our story of living with MS as a family. </span><br />
--<br /><span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span><br />
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<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br style="font-family: arial; font-size: small;" /><div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
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My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com9tag:blogger.com,1999:blog-19312567.post-54553643511411420912013-08-07T05:30:00.001-04:002013-08-08T09:17:44.472-04:00Caregiving Yours ... newsworthy?<span style="font-size: large;">Increasingly "My Lung Cancer Odyssey" and "Caregivingly Yours" cross over ...</span><br />
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<span style="font-size: large;">From “The Sentinel” Newspaper …</span><br />
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<i style="font-size: x-large;">“MECHANICSBURG — For the past 24 years of his life, Patrick Leer’s own health concerns were of little consequence in the face of his wife’s multiple sclerosis …“</i><br />
<span style="font-size: large;"><i><br /></i></span><span style="color: blue; font-size: large;"><i><a href="http://cumberlink.com/news/health/mechanicsburg-man-fights-stage-iv-lung-cancer-cares-for-wife/article_29f8d3a4-fe14-11e2-89cc-001a4bcf887a.html" target="_blank"><b>MECHANICSBURG MAN FIGHTS STAGE IV LUNG CANCER, CARES FOR WIFE WITH MS</b></a></i></span><br />
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<span style="font-size: large;">Thank you Christen Croley and “The Sentinel” for promoting awareness of Lung Cancer, Muliple Sclerosis and upcoming Pennsylvania Lung Cancer Partnership’s <span style="color: blue;"><a href="http://participate.freetobreathe.org/site/TR/FreetoBreatheSignatureEvents/General?pg=entry&fr_id=2000" target="_blank"><span style="color: blue;">Free To Breathe 5K Run/Walk</span></a> </span>on City Island on August 24th.</span></div>
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<span style="color: black; font-size: large;">I also blog for <a href="http://multiplesclerosis.net/">multiplesclerosis.net</a></span><br />
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<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
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My Lung Cancer Odyssey @<span style="color: cyan;"> <a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com8tag:blogger.com,1999:blog-19312567.post-78308593865656478912013-08-03T19:24:00.000-04:002013-08-03T19:24:31.735-04:00“You’re cane looks stupid!”<span style="font-size: large;">Breezy, partly sunny and 74˚F (23.3˚C) … it was not only a perfect Multiple Sclerosis afternoon but my first chance to push Patti’s wheelchair since chemotherapy for <a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: blue;"><b>my lung cancer </b></span></a>began 8 weeks ago</span><br />
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<span style="font-size: large;">After a couple blocks I yielded to Megan and walking next to Patti she notices my cane …</span><br />
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<span style="font-size: large;">Patti:<i> “You’re cane looks stupid!”</i></span><br />
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<span style="font-size: large;">Patrick: <i>“My cane looks stupid? … This from someone in a wheelchair … isn't that somewhat like the pot calling the kettle black”</i> </span><br />
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<span style="font-size: large;">The banter of laughter is a wonderful aperitif before dinner at <a href="http://www.helenascafe.com/" target="_blank"><span style="color: blue;"><b>Helena’s Chocolate Café & Crêperie</b></span></a> in Carlisle, PA </span><br />
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<span style="font-size: large;">Patti and Megan split a 'Nutella and Strawberry Crepe', I ‘chemo sampled’ a Breakfast Crepe featuring egg, ham and gruyère cheese </span><br />
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<span style="font-size: large;">…‘chemo sampled’ meaning I ate about half because of chemo suppressed appetite … I have learned to order foods that can easily be reheated at home as often appetite returns … or in this case I hope for ‘breakfast’ tomorrow.</span><br />
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<span style="font-size: large;">Washed down by Nantucket Nectars Lemonade, we finished by splitting a fruit (blueberry, raspberry, and kiwi) tort. </span><br />
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<span style="font-size: large;">Admittedly the assistive devices seem to be multiplying and since chemo </span><span style="font-size: large;">Megan has taken over the assisted feeding of Patti ... </span><br />
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<span style="font-size: large;">W</span><span style="font-size: large;">e have been living with Multiple Sclerosis as a family for 24 years … since chemo we push, roll, and now limp forward ... making the time for the banter of playful laughter ... We Are Family!!!</span><br />
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-<br /><span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span><div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br style="font-family: arial; font-size: small;" /><div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
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My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com8tag:blogger.com,1999:blog-19312567.post-74482886754006068832013-07-27T07:44:00.000-04:002013-07-27T11:09:13.333-04:00slap that tech<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 18.0pt; line-height: 115%;">(Sometimes <a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: blue;">Caregiving Yours </span></a>intertwines with
<a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: blue;">My Lung Cancer Odyssey</span></a>) <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 18.0pt; line-height: 115%;">Meeting with my oncologist to discuss
my CT Scan of neck, chest, abdomen and pelvis … <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 18.0pt; line-height: 115%;">... in ‘lay speak’ … after 6 weeks of
chemotherapy two of the three tumors in right lung have shrunk and one has not
grown … !!!!!!!!!<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 18.0pt; line-height: 115%;">… hugging and/or hi-fiving anyone and
everyone … it was time to pick up Patti for her annual mammogram …<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 18.0pt; line-height: 115%;">‘family assistance’ was requested
because Patti can be a most uncooperative patient, last year even slapping the
tech ending the unsuccessful session.<o:p></o:p></span></div>
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<span style="font-size: 18.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-size: 18.0pt; line-height: 115%;"><o:p></o:p></span></div>
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<span style="font-size: 18.0pt; line-height: 115%;">Not much different this year except
no one got hit …. Patti simply reinvented boundaries of cursing, swearing and
yelling even with her own daughter trying to help before another mammogram bit
the dust …</span><span style="font-size: 18pt; line-height: 115%;"> </span><br />
<span style="font-size: 18pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 18.0pt; line-height: 115%;">A little time with the ducks, Papa
John’s Pizza and Misto Shakes from Rita’s was next on the list …<o:p></o:p></span></div>
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<a href="http://4.bp.blogspot.com/-7sHM7EGB9Rc/UfOzLRrkJkI/AAAAAAAANmI/iAAKC5XD7TI/s1600/2013-07-26+(800x533).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="268" src="http://4.bp.blogspot.com/-7sHM7EGB9Rc/UfOzLRrkJkI/AAAAAAAANmI/iAAKC5XD7TI/s400/2013-07-26+(800x533).jpg" width="400" /></a></div>
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<span style="font-size: 18.0pt; line-height: 115%;">Picture collage captures me
“preparing” in waiting lounge for my meeting over lung cancer scan and our post
unsuccessful mammogram picnic in the park.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="font-size: 18.0pt; line-height: 115%;">“We я Scans” <o:p></o:p></span></div>
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<span style="font-size: 18.0pt; line-height: 115%;">--<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 18.0pt; line-height: 115%;">Patrick Leer<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="line-height: 115%;">Health Activist:<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="line-height: 115%;">Caregivingly Yours, MS Caregiver @
<a href="http://caregivinglyyours.blogspot.com/">http://caregivinglyyours.blogspot.com/</a><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="line-height: 115%;">My Lung Cancer Odyssey @
<a href="http://lung-cancer-survivor.blogspot.com/">http://lung-cancer-survivor.blogspot.com/</a><span style="font-size: medium;"><o:p></o:p></span></span></div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com9tag:blogger.com,1999:blog-19312567.post-48273042210612637022013-07-25T17:59:00.000-04:002013-07-25T17:59:03.749-04:00VOWS “What do words got to do with it?”<span style="font-size: large;">“…Saturday was Patti and my 28th wedding anniversary … while certainly considering all that has happened living with Multiple Sclerosis as a family and since Dec 2011 my lung cancer diagnosis … </span><span style="font-size: large;">yeah it is a long time … but each year we hear all these platitudes about ‘a guy who keeps his vows’ … bottom line WE have no vows between us nor ever have …”</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Perhaps in the expanded writing format of <a href="http://multiplesclerosis.net/"><span style="color: blue;">MultipleSclerosis.net</span></a> ... a little back story can elucidate </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-tnBUojYDp_c/UfGdbgLeEXI/AAAAAAAANlo/2bPIoVExWOg/s1600/Publication1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="141" src="http://3.bp.blogspot.com/-tnBUojYDp_c/UfGdbgLeEXI/AAAAAAAANlo/2bPIoVExWOg/s320/Publication1.jpg" width="320" /></a></div>
<div style="text-align: center;">
<span style="color: blue; font-size: large;"><a href="http://multiplesclerosis.net/living-with-ms/vows-what-do-words-got-to-do-with-it/" target="_blank"><b>VOWS? “What do words got to do with it?”</b></a></span></div>
<div style="text-align: center;">
<span style="font-size: large;">Posted by Patrick Leer—July 25th, 2013</span></div>
<span style="font-size: large;"><br /></span>
<br />
<div style="text-align: center;">
<span style="font-size: large;">“The measure of a man lies not in what he says but what he does” </span></div>
<div style="text-align: center;">
<span style="font-size: large;">Grant Morrison’s “Superman”</span></div>
<span style="font-size: large;"><br /></span>
<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span><br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Health Activist:</span><br />
<div>
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div>
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://lung-cancer-survivor.blogspot.com/</span></a></div>
</div>
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com5tag:blogger.com,1999:blog-19312567.post-25153430379802065292013-07-22T14:27:00.002-04:002013-07-22T14:27:44.185-04:00Plan Now For Changing Care Needs<span style="font-size: large;">Wow! There is nothing like a lung cancer DX to erase whatever I was doing ...</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I had just written an article for <a href="http://www.msfocus.org/magazines-newsletters.aspx" style="color: blue;" target="_blank"><span style="color: blue;">MSFocus magazine </span></a>on ironically '<i>plan now for changing care needs</i>' when lung cancer entered my world in Dec 2011 and I forgot to even share the article from their Winter 2012 issue ... that is until I was recently cleaning up. </span><br />
<span style="font-size: large;"><br /></span>
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<span style="font-size: large;"><a href="http://1.bp.blogspot.com/-8pD_oCqv8uM/Ue1zuiM0Z9I/AAAAAAAANk4/YGehRXtgkl4/s1600/IMG_0001+%2528639x800%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://1.bp.blogspot.com/-8pD_oCqv8uM/Ue1zuiM0Z9I/AAAAAAAANk4/YGehRXtgkl4/s400/IMG_0001+%2528639x800%2529.jpg" width="320" /></a></span></div>
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<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJdYveO6bnm9jDsDksPkM62RSw7NnYngWa9AmMONEky99ISP9WTgftIJjLwXAkNg_3hixO2aMksyPhj5MNP-velbPvzmS_iPL5T9zchrBxNV-Gjha4RUNptsXZ-ZW9qbTW9Xeo/s1600/IMG_0002+(641x800).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJdYveO6bnm9jDsDksPkM62RSw7NnYngWa9AmMONEky99ISP9WTgftIJjLwXAkNg_3hixO2aMksyPhj5MNP-velbPvzmS_iPL5T9zchrBxNV-Gjha4RUNptsXZ-ZW9qbTW9Xeo/s400/IMG_0002+(641x800).jpg" width="320" /></a></span></div>
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<span style="font-size: large;"><a href="http://2.bp.blogspot.com/-8CGHR7H4zDQ/Ue1zedD3wdI/AAAAAAAANkk/dzi80fvUFu4/s1600/IMG_0003+(800x504).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="201" src="http://2.bp.blogspot.com/-8CGHR7H4zDQ/Ue1zedD3wdI/AAAAAAAANkk/dzi80fvUFu4/s320/IMG_0003+(800x504).jpg" width="320" /></a></span></div>
<br />
<span style="font-family: arial; font-size: large;"><i>"...More importantly, the plus is that Patti is secure, safe, nearby, and has 24/7 care the rest of her life. Some days, I have to keep reminding myself of that positive outcome. And when you add it up. it is an extraordinary safety net."</i></span><br />
<span style="font-family: arial;">-- </span><br style="font-family: arial; font-size: small;" /><span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span><br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Health Activist:</span><br /><div>
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div>
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://lung-cancer-survivor.blogspot.com/</span></a></div>
</div>
<br />Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com4tag:blogger.com,1999:blog-19312567.post-53987832040873463662013-07-20T21:23:00.000-04:002013-07-20T21:23:01.513-04:0028th Anniversary<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Is a picture
worth a thousand words?</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-coXU0hVPm6s/Ues3IZFsbyI/AAAAAAAANkQ/NeIiy6U3CDY/s1600/2013-07-20+(800x533).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="268" src="http://4.bp.blogspot.com/-coXU0hVPm6s/Ues3IZFsbyI/AAAAAAAANkQ/NeIiy6U3CDY/s400/2013-07-20+(800x533).jpg" width="400" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
--<br /><span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small; line-height: normal;">Health Activist:</span></div>
<br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><o:p></o:p></span></div>
<div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: blue;">http://lung-cancer-survivor.blogspot.com/</span></a></div>
</div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com6tag:blogger.com,1999:blog-19312567.post-65898881552964979082013-07-17T19:45:00.001-04:002013-07-17T19:48:27.454-04:00MS independence takes support<span style="font-size: large;"><i>“Noticing I’m wearing an old MS Walk shirt that exclaims <b>“Every hour SOMEONE LEARNS they have MS!”</b>… OK so how often does someone learn they are a MS caregiver?</i></span><br />
<span style="font-size: large;"><i><br /></i></span>
<span style="font-size: large;"><i>We are never really diagnosed … to paraphrase Shakespeare from ‘Twelfth Night’ … “Some are born MS Caregivers, some achieve MS Caregiver and others have MS Caregiving thrust upon them.”</i></span><br />
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<a href="http://3.bp.blogspot.com/-A8TaJvPFCFo/UVxN9ffEELI/AAAAAAAAM1A/v1tjx60uP_U/s1600/msnet+%2528800x800%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://3.bp.blogspot.com/-A8TaJvPFCFo/UVxN9ffEELI/AAAAAAAAM1A/v1tjx60uP_U/s200/msnet+%2528800x800%2529.jpg" width="200" /></a></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">For MultipleSclerosis.net …</span><br />
<div style="text-align: center;">
<span style="color: blue; font-size: large;"><b><a href="http://multiplesclerosis.net/?p=1337" target="_blank">INDEPENDENCE TAKES SUPPORT</a></b></span></div>
<div style="text-align: center;">
<span style="font-size: large;">Posted by Patrick Leer—July 17th, 2013</span></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><i>"Living with MS as a family and dependence can be a contradiction in care. With MS symptom progression, my role as caregiver became increasingly necessary because bottom line … ‘Independence’ takes support.”</i></span><br />
<span style="font-size: large;"><i><br /></i></span>
<span style="font-size: large;"><i>“It's my job as MS caregiver to help every family member remain as independent as possible (and oh yeah, kind of like Santa please don’t let anyone see you do it).” </i></span><br />
<span style="font-size: large;"><i><br /></i></span>
--<br />
<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span><br />
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://lung-cancer-survivor.blogspot.com/</span></a><span style="color: blue;"> </span></div>
</div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com1tag:blogger.com,1999:blog-19312567.post-43785757543755511742013-07-14T22:17:00.001-04:002013-07-14T22:17:21.838-04:00the straw that stirs the drink<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Living
with Multiple Sclerosis as a family I used to feel was a parallel universe …
and frankly it still is but when changes in other family members occur it
becomes more like a benevolent maelstrom … swirling together Patti’s MS, my
lung cancer DX, and the death of Patti’s father.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Through
Patti’s eyes (MS dementia and cognitive impairments) I have no lung cancer, her
Dad’s in heaven and an afternoon of family fun is just that … fun and laughter.
She is practically the straw that stirs the drink. <o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-kniAmsQTAQQ/UeNbICFN9pI/AAAAAAAANiY/73A6VCWHFZQ/s1600/2013-07-14+(800x533).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="214" src="http://1.bp.blogspot.com/-kniAmsQTAQQ/UeNbICFN9pI/AAAAAAAANiY/73A6VCWHFZQ/s320/2013-07-14+(800x533).jpg" width="320" /></a></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Empowered
by our daughter boldly facing the unimaginable herself … listening to their banter
driving … I sit in awe.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
--<br /><span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br style="font-family: arial; font-size: small;" /><div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
</div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com4tag:blogger.com,1999:blog-19312567.post-52231549141879510602013-07-11T12:30:00.001-04:002013-07-11T12:30:26.306-04:00chemotherapy <span style="font-size: large;">From <span style="color: blue;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: blue;"><b>MY LUNG CANCER ODYSSEY</b></span></a> </span>...</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">... Time with Patti has been a constant frustration through this past month of chemo … down from at least 3 outings/visits a week we have been lucky to have one … <i>‘focusing on my cancer’ </i>the absence of caregiving time gets in my head like negative energy.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Our daughter has been a godsend somehow creating opportunity between everything else going on … we had a fun afternoon Wednesday snacking on popcorn and popsicles in front of TV and catching some sun on the back patio … all the time with ‘no lung cancer’ since Patti’s MS dementia and cognitive problems prevent her from remembering.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-aMJEGldr8BA/Ud7T9l1ThzI/AAAAAAAANh8/GdlXGY5mQTo/s1600/2013-07-10+%2528800x533%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="268" src="http://4.bp.blogspot.com/-aMJEGldr8BA/Ud7T9l1ThzI/AAAAAAAANh8/GdlXGY5mQTo/s400/2013-07-10+%2528800x533%2529.jpg" width="400" /></a></div>
<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span><br />
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<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br style="font-family: arial; font-size: small;" /><div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
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My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com6tag:blogger.com,1999:blog-19312567.post-47102844148716969212013-06-25T14:54:00.000-04:002013-06-26T09:41:13.874-04:00death dying and MS dementia<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: inherit; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">A niece
of Patti’s notified me Saturday that Patti’s father (<a href="http://obits.pennlive.com/obituaries/pennlive/obituary.aspx?n=harold-a-decker&pid=165537120&fhid=28179#fbLoggedOut" target="_blank"><span style="color: blue;">Harold Decker</span></a>) had died earlier Saturday.
Speaking for, to, or whatever for dementia was never a role I wanted.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><br /></span></div>
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<span style="font-family: inherit; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Yet the
die was cast and frankly I do have the most experience.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Humbled
by two weeks of Chemo Fatigue and on guard from others getting inside my
failing immune system, our daughter and I concocted a plan.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">We
arranged with care facility to set up a sleeping pill for the evening, just in
case. Then after completing my saline drip or the day we returned home for
phase II<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Feeding Patti
a comfort food dinner, I began with, “Patti your father died” … <b><i>“what!!!
Harold Decker is dead?”</i></b><i><o:p></o:p></i></span></div>
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<span style="font-family: inherit; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Shifting
to logistics … <b><i>“My Dad is in heaven … why would he give a shit?”<o:p></o:p></i></b></span></div>
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<span style="font-family: inherit; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Letting
Patti run with the agenda we zoomed in and out of ‘remembering’<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">I don’t
know what Patti will or will not remember but I pray it is memories of life and
laughter from long ago …<o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-iCHJF6PLpNM/UcneaKW6sQI/AAAAAAAANcc/b3EHfGMHDTY/s1600/Xmas+cards+letters.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" height="268" src="http://2.bp.blogspot.com/-iCHJF6PLpNM/UcneaKW6sQI/AAAAAAAANcc/b3EHfGMHDTY/s400/Xmas+cards+letters.jpg" width="400" /></span></a></div>
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<span style="font-family: inherit; font-size: large;">... and by our daughter to keep her Mom connected and
engaged through My Lung Cancer Odyssey she has empowered father daughter time including this now iconic photo of Harold and, Patti in front of grave of
George Decker from Memorial Day Weekend at New Freedom Cemetery.</span></div>
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<a href="http://3.bp.blogspot.com/-Zr9JhPdKyXQ/UcngPbAQnYI/AAAAAAAANcs/Da1EkPepDiE/s1600/haroldpatti+(786x584).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" height="239" src="http://3.bp.blogspot.com/-Zr9JhPdKyXQ/UcngPbAQnYI/AAAAAAAANcs/Da1EkPepDiE/s320/haroldpatti+(786x584).jpg" width="320" /></span></a></div>
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<i style="text-align: start;"><span style="font-family: inherit;">Patrick Leer</span></i></div>
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<span style="font-family: inherit;">Health Activist:</span><br />
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<span style="font-family: inherit;">Caregivingly Yours, MS Caregiver @ <a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></span></div>
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<span style="font-family: inherit;">My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://lung-cancer-survivor.blogspot.com/</span></a></span></div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com8tag:blogger.com,1999:blog-19312567.post-14857618920239177262013-06-13T20:26:00.000-04:002013-06-14T00:12:28.895-04:00Unicorn Trapped In A Cage<span style="background-color: white; color: #242424; line-height: 20px;"><span style="font-family: Verdana, sans-serif; font-size: large;"><a href="http://multiplesclerosis.net/"><b>MultipleSclerosis.net</b></a> brings such inovation and dialogue to the MS community, sometimes I feel like a tribal elder.</span></span><br />
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<a href="http://1.bp.blogspot.com/-G6zxxfdEm20/UbqX1RtwmmI/AAAAAAAANbU/b53NU72BbO8/s1600/windsurfing+Sept+1983.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="214" src="http://1.bp.blogspot.com/-G6zxxfdEm20/UbqX1RtwmmI/AAAAAAAANbU/b53NU72BbO8/s320/windsurfing+Sept+1983.jpg" width="320" /></a></div>
<span style="background-color: white; color: #242424; line-height: 20px;"><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></span>
<span style="font-family: Verdana, sans-serif; font-size: large;"><span style="background-color: white; color: #242424; line-height: 20px;">And if this tribal elder can toss in his two bits you learn to find and remember to treasure the fun moments living with Multiple Sclerosis as family, because Patti </span><span style="background-color: white; color: #242424; line-height: 20px;">inside the MS is still there even a quarter century later – A unicorn trapped in a cage.</span></span><br />
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<a href="http://2.bp.blogspot.com/-IugRNNCRJL0/UYhqNUR_lvI/AAAAAAAANAM/Vp9oYD1GbSk/s1600/img_forums_new_2x+%2528160x160%2529jpeg.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif; font-size: large;"><img border="0" src="http://2.bp.blogspot.com/-IugRNNCRJL0/UYhqNUR_lvI/AAAAAAAANAM/Vp9oYD1GbSk/s1600/img_forums_new_2x+%2528160x160%2529jpeg.jpg" /></span></a></div>
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<a href="http://multiplesclerosis.net/living-with-ms/voting-with-ms/" target="_blank"><b><span style="color: blue; font-family: Verdana, sans-serif; font-size: large;">Unicorn Trapped In A Cage</span></b></a></div>
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<em style="background-color: white; border: 0px; color: #242424; line-height: 20px; margin: 0px; outline: 0px; padding: 0px;"><small style="border: 0px; margin: 0px; outline: 0px; padding: 0px;"><span style="font-family: Verdana, sans-serif; font-size: large;">Posted by <a href="http://multiplesclerosis.net/community/experts/patrick-leer/" rel="author external" style="border: 0px; color: #ff6721; margin: 0px; outline: 0px; padding: 0px; text-decoration: none;" title="Visit Patrick Leer’s website">Patrick Leer</a>—June 13th, 2013</span></small></em></div>
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<i><span style="font-family: Verdana, sans-serif;">Patrick Leer</span></i></div>
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<span style="font-family: Verdana, sans-serif;">Health Activist:</span><br />
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<span style="font-family: Verdana, sans-serif;">Caregivingly Yours, MS Caregiver @ <a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://lung-cancer-survivor.blogspot.com/</span></a></span></div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com1tag:blogger.com,1999:blog-19312567.post-29129198088754629782013-06-10T07:28:00.000-04:002013-06-10T18:41:12.559-04:00miscarriage and Multiple Sclerosis <div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Somewhere I Recently saw an article or discussion that there is ‘no evidence’ of MS having a higher rate of miscarriage.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Yet, Patti miscarriaged twice between 1985 and 1990. Frankly that is more than ‘evidence’ in our story of living with MS as a family.<o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-IwxQZPoo1E8/UbW25wVWyxI/AAAAAAAANYM/sdquQv6r1aw/s1600/meganshoes.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"><img alt="" border="0" height="200" src="http://2.bp.blogspot.com/-IwxQZPoo1E8/UbW25wVWyxI/AAAAAAAANYM/sdquQv6r1aw/s200/meganshoes.jpg" title="Megan playing with shoes and Patti" width="134" /></span></a></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">First was in first trimester, the second following an amniocentesis procedure … essentially bookending the successful birth of our one daughter in 1988.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Back in those days, there was even some neuro mumbo jumbo that pregnancy may help and/or slow MS progression.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Patti’s second miscarriage resulted from our failing belief in ourselves. MS erodes more than the physical.<o:p></o:p></span></div>
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<span style="font-size: large;"><br /></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">A week following an amniocentesis procedure, the fetus was found dead on ultrasound. Patti underwent her second surgery for dilation and curettage (D&C Procedure), both miscarriaged fetuses were female.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">In those days, miscarriage was considered a rare risk yet it happened. Did MS increase the risk? … In a handful of months Patti would be hospitalized for her first major MS exacerbation. Was this linked?<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Back in ’88 the New York Times published <a href="http://www.nytimes.com/1988/07/27/us/study-finds-31-rate-of-miscarriage.html" target="_blank"><span style="color: #0b5394;">“Study Finds 31% Rate of Miscarriage”</span></a><span style="color: blue;">.</span> I did not even have to take my shoes off to calculate Patti’s rate was 66%. Why double the norm? MS?<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Lacking a National Health Service we build a health system not on numbers or facts but on shared conjecture.<o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Except that a miscarriage is never a statistic, it is the death of a dream. How do you bury a dream? How to you mourn a dream? How do you not abhor Multiple Sclerosis, this murderer of dreams?</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">When I have paused through the quarter century of juggling MS Spouse Caregiving and basically single parenting our daughter and pondered if three daughters would have been harder or easier … I just hate Multiple Sclerosis more.<o:p></o:p></span></div>
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<span style="font-family: arial; font-size: large;">-- </span><br />
<span style="font-family: comic sans ms, sans-serif; font-size: large;"><i>Patrick Leer</i></span></div>
<div style="font-family: arial;">
<span style="font-family: arial, helvetica, sans-serif;">Health Activist:</span><br />
<div>
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div>
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://lung-cancer-survivor.blogspot.com/</span></a></div>
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Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com5tag:blogger.com,1999:blog-19312567.post-5498845520692550892013-06-07T10:37:00.000-04:002013-06-08T05:14:13.168-04:00MS is about playing Russian roulette every morning<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><i>“In our first 10 years of living with MS as a family, Patti would refer to waking up with MS as if waking up and playing Russian roulette every morning. She would lay there with her eyes closed taking an inventory of what worked and didn’t work today…”</i><o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-IugRNNCRJL0/UYhqNUR_lvI/AAAAAAAANAM/Vp9oYD1GbSk/s1600/img_forums_new_2x+%2528160x160%2529jpeg.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" src="http://2.bp.blogspot.com/-IugRNNCRJL0/UYhqNUR_lvI/AAAAAAAANAM/Vp9oYD1GbSk/s1600/img_forums_new_2x+%2528160x160%2529jpeg.jpg" /></span></a></div>
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><b><a href="http://multiplesclerosis.net/living-with-ms/morning-roulette-what-body-parts-work/" target="_blank"><span style="color: blue;">Morning Roulette – What Body Parts Work?</span></a></b><o:p></o:p></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Posted by Patrick Leer—June 5th, 2013<o:p></o:p></span></div>
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<span style="font-size: large;"><br /></span>
<span style="font-size: large;">When I wrote this for the folks at pioneering <span style="color: blue;"><a href="http://multiplesclerosis.net/">MultipleSclerosis.net</a></span>, I shared that from my experiences as a MS spouse caregiver and family we must be equally passionate. We need to wake each day to a ‘pragmatic check list’ of how can we make the day better for our spouse and our family.</span></div>
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<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: large;"><span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Shortly after writing this my world collapsed into an earthquake as my cancer staging soared from Stage 1 to Stage 3 to Stage 4 with brain metastasis. ... <a href="http://lung-cancer-survivor.blogspot.com/2013/05/whoompa-whoompa-headaches-metastasis.html" target="_blank"><span style="color: purple;"><b>whoompa whoompa headaches = metastasis</b></span></a></span></span><br />
<span style="font-size: large;"><br /></span></div>
<span style="font-size: large;">I know it sounds nuts but through these recent weeks of brain radiation treatment to arrest and/or reverse brain metastasis making sure outings with Patti are part of each week have been stabilizing for me and frankly fun because in Patti’s smiling MS dementia I have no lung cancer. </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-y3vjpKnsnQc/UbGsgnX6omI/AAAAAAAANXE/z3o8LVqdjAM/s1600/100_0952+(800x534).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" height="215" src="http://1.bp.blogspot.com/-y3vjpKnsnQc/UbGsgnX6omI/AAAAAAAANXE/z3o8LVqdjAM/s320/100_0952+(800x534).jpg" width="320" /></span></a></div>
<div class="separator" style="clear: both;">
<span style="font-size: large;">--</span><i style="font-family: 'comic sans ms', sans-serif; font-size: large;">Patrick Leer</i></div>
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
</div>
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com0tag:blogger.com,1999:blog-19312567.post-45456936908000844512013-06-05T06:25:00.000-04:002013-06-08T05:13:05.096-04:00Multiple Sclerosis home improvements for accessiblity<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Sitting
down to write an article for <a href="http://multiplesclerosis.net/">MultipleSclerosis.net</a> with all its modern cyber
features and connections, I can never forget the pre-Internet dawn when I
discovered I was not alone!<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Less I
digress, God bless technology but MS caregiving is, was, and always will be
about ‘hands on’. Social Media will never pick anyone off the
floor and that IMHO is the ghost in the machine.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">As the
spouse or family member without MS you must be the balance between supporting a
hope driven life with MS and pragmatically anticipating and preparing for
change.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: large;"><br /></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-align: center;">
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-IugRNNCRJL0/UYhqNUR_lvI/AAAAAAAANAM/Vp9oYD1GbSk/s1600/img_forums_new_2x+%2528160x160%2529jpeg.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" src="http://2.bp.blogspot.com/-IugRNNCRJL0/UYhqNUR_lvI/AAAAAAAANAM/Vp9oYD1GbSk/s1600/img_forums_new_2x+%2528160x160%2529jpeg.jpg" /></span></a></div>
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><a href="http://multiplesclerosis.net/living-with-ms/home-improvements-for-accessibility/" target="_blank"><span style="color: blue;"><b>Home Improvements For Accessibility</b></span></a><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-align: center;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">by Patrick Leer—June 3rd, 2013<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">A little
back story not in the article … We bought our original home in College Park, MD. Built in
1904 and restored in 1968 it began life as a farm house surrounded by farm land
in the early 20<sup>th</sup> Century.</span><br />
<span style="font-size: large;"><span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span>
<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">The sellers seemed almost a
mirror image … yet while we shopped the asking price plummeted. … the Dad
had come down with a "disabling pulmonary condition" from his
asphalt business and shackled with the 20%+ mortgage rates of the Carter era
they were bleeding out and overwhelmed by the advent of disabling disease into
their family of three.<o:p></o:p></span></span></div>
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<span style="font-size: large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-jcCVehQH1jA/Ua7GQoTUv1I/AAAAAAAANVE/8jNX2Q_0zZI/s1600/IMG_0005+(800x533).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"></span></a></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Patti,
then a buyer for Stanford Paper, pounced and fueled with the 8% mortgage of the
Regan era ‘signed sealed and delivered’ our first home.. </span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<a href="http://4.bp.blogspot.com/-jcCVehQH1jA/Ua7GQoTUv1I/AAAAAAAANVE/8jNX2Q_0zZI/s1600/IMG_0005+(800x533).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"><img alt="" border="0" height="134" src="http://4.bp.blogspot.com/-jcCVehQH1jA/Ua7GQoTUv1I/AAAAAAAANVE/8jNX2Q_0zZI/s200/IMG_0005+(800x533).jpg" title="pre-MS Patti 'standing' on brick steps of our first home" width="200" /></span></a><span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">…Within just a couple
years a DX of Multiple Sclerosis entered our lives increasingly making our home unsafe for
Patti. I was surprised to find this old picture of Patti ‘standing’ in front of
the house on the brick steps.<o:p></o:p></span></div>
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<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Patti’s
refusal to ever let the house appear to have an accessible entrance
unquestionably complicated adapting. Excuse me patting myself on the back but I
built a 400 ft long boardwalk from our driveway wrapping around the house and
ending in what appears to be an oversized deck, yet is basically a 'disguised from street view' wheelchair
accessibility ramp ... soon our daughter and her friends were skateboarding, roller blading and bicycling along with Patti's scooter from door to street.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-cL6IFqO_16k/Ua7GzesYGSI/AAAAAAAANVM/m9taaHeKEpI/s1600/IMG+(800x534).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><span style="font-size: large;"><img border="0" height="215" src="http://3.bp.blogspot.com/-cL6IFqO_16k/Ua7GzesYGSI/AAAAAAAANVM/m9taaHeKEpI/s320/IMG+(800x534).jpg" width="320" /></span></a></div>
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</div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, sans-serif; font-size: large; line-height: 115%;">As these
clips from real estate flyer demonstrate our house became accessibility marketable over the time we lived there. Bought by a landlord investor he quickly sub-divided it into three 'accessible apartments.'</span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Never underestimate the role of extended family. Patti was, is, and will
always be Harold Decker’s 'little girl' and when Dad is a tile contractor well each visit brought the loving touch of power tools to keep pace with physical progression.</span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: large;">-</span><br />
<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
</div>
<div>
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span></div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com1tag:blogger.com,1999:blog-19312567.post-83924553294371567462013-06-02T07:04:00.000-04:002013-06-02T08:46:15.186-04:00not just your everyday Saturday afternoon<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="font-family: Arial, sans-serif; line-height: 115%;"><span style="font-size: x-small;"><i>"Pack
Up Your Troubles in Your Old Kit-Bag, and Smile, Smile, Smile" </i></span><span style="font-size: 16pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Saturday
was not a MS friendly afternoon with temps sweltering at 94°F (34.4°C) and we
had been invited to a graduation party by Patti’s niece and her boyfriend’s
family. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-zPpmcSCn3sg/Uasl2oIdenI/AAAAAAAANT0/yvCORC3Kh2w/s1600/2013-06-003+(800x533).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="" border="0" height="214" src="http://4.bp.blogspot.com/-zPpmcSCn3sg/Uasl2oIdenI/AAAAAAAANT0/yvCORC3Kh2w/s320/2013-06-003+(800x533).jpg" title="graduation party collage" width="320" /></a></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">First
let me give a shout out to the Heckendorn family, your accessible home and hospitality
‘in our world’ was so much more than appreciated.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Uhthoff's
Phenomenon seemed suspended as Patti was unaffected for almost 3 hours outdoors. Yes,
her NMSS keck cooler helped plus the fan someone positioned near our table
blowing gently across Patti … frankly sometimes
I gawked in disbelief. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Over the
years these rare brief suspension of MS symptoms always create a MS time travel
moment. Nothing changes Patti’s physical dependence but an ‘ascendant’ Patti
engaged and enjoyed the party.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Even
when feeding her I noticed MS dysphagia symptoms were asleep and not affecting chewing
or swallowing.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">When ‘MS speech’ finally broke through jumping into a pause in her brother’s toast …
it was a sweet remark to make.</span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span>
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Personally finding a bowl of 'atomic fireballs' on the desert table was the pièce de résistance. </span></div>
<br />
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Sometimes
when lung cancer pushes multiple sclerosis up a hill, there is a smile waiting
at the top.<o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-jsqIb1Zyfr8/UasmCkQpq3I/AAAAAAAANT8/UETYEc_EDh8/s1600/100_0952+(800x534).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="215" src="http://3.bp.blogspot.com/-jsqIb1Zyfr8/UasmCkQpq3I/AAAAAAAANT8/UETYEc_EDh8/s320/100_0952+(800x534).jpg" width="320" /></a></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: arial; font-size: x-small;">-- </span><br />
<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Health Activist:</span><br />
<div>
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div>
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://lung-cancer-survivor.blogspot.com/</span></a></div>
</div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com4tag:blogger.com,1999:blog-19312567.post-52752083221612604192013-05-30T06:34:00.000-04:002013-05-30T06:34:25.297-04:00hidden symptoms of MS <div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">MSAA
(Multiple Sclerosis Association of America) has IMHO an excellent article in
their Winter/Spring 2013 "The Motivator<br />…<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div align="center" class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-align: center;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><a href="http://www.mymsaa.org/publications/motivator/winter-spring13/cover-story/" target="_blank"><span style="color: blue;"><b>The Hidden Symptoms of MS</b></span></a><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-align: center;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><i>Managing the symptoms that those around </i></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; text-align: center;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><i>you may not easily see or
understand</i><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-kxsl_3FLRDk/Uaco5IRGUmI/AAAAAAAANRg/KTwVuy6J0bo/s1600/msaacover+(155x201).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-kxsl_3FLRDk/Uaco5IRGUmI/AAAAAAAANRg/KTwVuy6J0bo/s1600/msaacover+(155x201).jpg" /></a></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Along with
stories on Pain with MS, Coping With Fatigue, Sleep Issues, Cognitive Changes and Visual
Problems. MSAA Winter/Spring 2013 is one of the best I’ve read <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<br />
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">In our
story, hidden or ‘invisible’ symptoms were not really a factor except to isolate from the beginning any kind of support groups for Patti because others <b>with MS </b>were about as
different as those<b> without MS</b>.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">I appears if you do not receive their twice annual magazine then you can download a PDF version from the <a href="http://www.mymsaa.org/publications/motivator/" target="_blank"><span style="color: blue;">MSAA 'Motivator' </span></a>web site.</span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br style="font-family: arial; font-size: small;" /><div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
</div>
<div>
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span></div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com0tag:blogger.com,1999:blog-19312567.post-89764286869150646032013-05-29T06:02:00.000-04:002013-05-29T06:18:46.499-04:00World MS Day is ALSO about MS caregivers, families, and friends<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">The fear
of being left all alone with a disabling illness such as Multiple Sclerosis to
cope in a hard and scary world I imagine is more than universal.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Then on
the other side is debate over sacrificing your own life as a caregiver. Some
argue morality is a code of life not death. Your first moral duty is to take
care of yourself.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Believe
me after a quarter century no one gets both. IMHO it has nothing to do with
philosophy or fears; there really is no right or wrong answer. … It’s about
what you are made of. The person diagnosed with MS has no choice. Caregiver, friends, and family on the other hand is all about choice.<o:p></o:p></span><br />
<span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Today is <a href="http://www.msif.org/about-us/advocating-and-awareness-raising/world-ms-day/world-ms-day-2013.aspx" target="_blank"><span style="color: blue;">World MS Day 2013</span></a>, </span>TWO million people around the world are living with Multiple Sclerosis. Add in their caregivers, families, and friends = mind boggling numbers.</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-Cf28qAMkopA/UaVk_MA-n8I/AAAAAAAANQY/8ALGURThbeg/s1600/2006-12+Philadelphia+%2528533x800%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><img alt="" border="0" height="200" src="http://1.bp.blogspot.com/-Cf28qAMkopA/UaVk_MA-n8I/AAAAAAAANQY/8ALGURThbeg/s200/2006-12+Philadelphia+%2528533x800%2529.jpg" title="Christmas in Philadelphia 2006" width="134" /></span></a></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Christ’s cry from the cross, <i>"My God, My God, why have You forsaken
Me?"</i> has kept men and women of faith busy for centuries. … While those of
us with feet of clay simply try to live with chronic illnesses like Multiple
Sclerosis as family and create the best of possible lives.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Some
will walk away, some will drift inside themselves and some may actually make
things worse by staying with their negativity. I cannot fault any person when medical science itself has left MS in the dust of the laboratory floor.</span></div>
<span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
</span><br />
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">I’m no
believer in deep thinking over intuition, vows, promises or whatever. To my knowledge Patti's first huband has never even cared and hell's bells those two were in love. Marrying before God and man to all the right vows, love and all the bells and whistles only to have domestic violence end their marriage. Evil does not always masquearde as a disease.</span><br />
<span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: small; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span>
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><span style="font-family: Arial, Helvetica, sans-serif;">We have no vows nor promises between us only a belief in the words of the Prophet </span></span><span style="font-family: Arial, Helvetica, sans-serif;"><i>"Give your hearts, but not into each other's keeping. For only the hand of Life can contain your hearts. Stand together, yet not too near together: For the pillars of the temple stand apart, and the oak tree and the cypress grow not in each other's shadow.”</i></span></span><br />
<span style="font-size: large;"><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">I honestly believe it comes down to caring. MS caregiving will become physical care with lifting transferring and more. Do I have true grit?<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><span style="font-family: Arial, Helvetica, sans-serif;">As always
my thanks to MultipleSclerosis.net …</span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="font-family: "Arial","sans-serif"; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><a href="http://multiplesclerosis.net/living-with-ms/the-few-the-proud-the-ms-spouse-caregivers/" target="_blank"><span style="color: blue;"><b>The few,the proud, the MS Spouse Caregivers</b></span></a><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: center;">
<span style="font-family: "Arial","sans-serif"; font-size: medium; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><span style="font-size: large;">by Patrick Leer—May 27th, 2013</span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Arial","sans-serif"; font-size: 16.0pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: blue;">http://lung-cancer-survivor.blogspot.com/</span></a></div>
</div>
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com0tag:blogger.com,1999:blog-19312567.post-40652474884157450322013-05-27T18:16:00.002-04:002013-05-27T18:33:24.899-04:00veterans our trancendental caregivers<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: inherit; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">151
years ago a succesful farmer named George R Decker simply did the right thing. Riding 50
miles north from his farm near the Mason Dixon line dividing northern and
southern states, union vs confederate, or slave states from free states to join
the <a href="http://petruzzi.wordpress.com/2007/06/15/the-17th-pennsylvania-cavalry/" style="color: blue;" target="_blank">17<sup>th</sup> Pennsylvania Calvary</a><span style="color: blue;"> </span>for the duration of the US Civil War charging through most of the battles of the Eastern war including defending their home State at Gettysburg. . <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: inherit; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: inherit; font-size: large; line-height: 115%;">Living
with Multiple Sclerosis as a family may not always be associated with saying
thank you; however we are really no different. </span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: inherit; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: inherit; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">It’s
Memorial Day and we honor and give thanks to the men and women who are IMHO the
transcendental caregivers. <o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-QK291dsvfoU/UaPXiHyvYGI/AAAAAAAANPg/fp7bsmYhgKw/s1600/haroldpatti+(786x584).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit; font-size: large;"><img alt="" border="0" height="239" src="http://1.bp.blogspot.com/-QK291dsvfoU/UaPXiHyvYGI/AAAAAAAANPg/fp7bsmYhgKw/s320/haroldpatti+(786x584).jpg" title="Gerorge and Lydia Decker visited by their future generations" width="320" /></span></a></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: inherit; font-size: large; line-height: 115%;">This picture holds some powerful DNA for both survival and caring. While none is mine, it
was my honor to reunite 3 generations of his descendants where he and his
wife’s remains rest in New Freedom Cemetery, New Freedom, PA on this Memorial
Day 2013.</span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: inherit; font-size: large;"><br /></span></div>
<span style="font-family: inherit; font-size: large;">No one
ever promised a perfect world but our veterans guarantee us a free world. </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-5t8NEGE2YwM/UaPY4PY8gbI/AAAAAAAANPw/4YJkn4Ai8C0/s1600/Publication1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit; font-size: large;"><img alt="" border="0" height="282" src="http://2.bp.blogspot.com/-5t8NEGE2YwM/UaPY4PY8gbI/AAAAAAAANPw/4YJkn4Ai8C0/s320/Publication1.jpg" title="Memorial Day Celebration, New Freedom Cemetery " width="320" /></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit; font-size: large;"><span style="font-family: inherit;">Local veteran groups pesented an inpirational small town American Memorial Day.</span> </span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
</div>
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com0tag:blogger.com,1999:blog-19312567.post-75472655199086627062013-05-24T23:43:00.002-04:002013-05-25T06:59:39.882-04:008 milestones of a caring life<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Since my
own <a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: blue;">My Lung Cancer Odyssey</span> </a>leapt from Stage 1 to Stage 4 recently, I am finding
each morning more like looking at a surreal gate.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Which may
or may not have to do with the life fact that I have cared for my wife’s severe
Multiple Sclerosis for a quarter century and my own lung cancer for only 17
months. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Oddly
this morning reflected in the dawn showers I found myself back in the summer of
1988. Our world as a young family starting out was 13 months from exploding.
Patti had been diagnosed with ‘probable MS’ in 1985 but the minor symptoms were
receded and forgotten.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">We were
sharing a vacation house with Patti’s brother and sister in law and their
daughter at Nag’s Head, NC. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">My brain
was stabbed awake just before dawn and I gave up on sleep. Unlike migraines,
with my Cluster Headaches light, motion, and activity always helped soothe.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Soooo
why not carry our daughter down to learn to greet dawn at
the beach. 5 months old is never too young.<o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxXeYr8ls6tAo8FYd03gsAnShs2g4MVKJC820U3Q_0JrREd6hagTIThSUcKjYxSBFyr3UScrm-5P-w' class='b-hbp-video b-uploaded' frameborder='0'></iframe></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">I also found
myself wondering about parents? I cannot even imagine what it would feel to be
a parent when your adult child’s life explodes from a monstrous diagnosis like
MS to a dependent life which you cannot fix - just hold and soothe. Life really
is told in minutes of care.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">Patti’s
Mom, Gloria Decker celebrated her 80<sup>th</sup> birthday today. Patti safe,
secure, and attended was in the care facility. How aware or even wanting to
participate with her siblings was doubtful. MS has a way of flipping life with
age. Young adults cannot remember, cannot participate.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Gloria
has been a mainstay for Patti, always visiting always encouraging, loving
unequivocally.</span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-79eD-ReCOo4/UaCZJllaNgI/AAAAAAAANNo/qaod8PRu5Lo/s1600/80bday+(572x800).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-79eD-ReCOo4/UaCZJllaNgI/AAAAAAAANNo/qaod8PRu5Lo/s320/80bday+(572x800).jpg" width="229" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi;">We wanted
to do something special that even Patti could see and enjoy. …. and putting our
heads together we decide to try and create a ‘milestone
picture’ featuring 8 firework fountains for each milestone year of 80 years of a
caring life. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; line-height: 115%;">Living
with MS as a family creates a special kind of family.</span></div>
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<span style="font-family: Arial, sans-serif; font-size: 16pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: comic sans ms, sans-serif; font-size: medium;"><i>Patrick Leer</i></span></div>
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank"><span style="color: blue;">http://lung-cancer-survivor.blogspot.com/</span></a></div>
</div>
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<br /></div>
Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com4tag:blogger.com,1999:blog-19312567.post-30973762472072388262013-05-22T03:20:00.003-04:002013-05-22T06:41:06.880-04:00Paperwork of Living With Multiple Sclerosis-The Proverbial Weakest Link<span style="line-height: 115%;"><span style="font-family: inherit; font-size: large;">In our
US healthcare system, medical insurance makes or breaks way too much. As the health
care reform at least rolls out the affordable care act is an enigma to most and
to anyone impaired or ill there are potential catastrophic choices looming in options.</span></span><br />
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<span style="font-family: inherit; font-size: large;"><br /></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit; font-size: large;">When we
the people in the mid 1980’s through everything from federal legislation to
divestment of stocks by colleges, towns, organizations and more of
businesses supporting South Africa we the people were credited as pressuring the South African Government to embark on negotiations
ultimately leading to the dismantling of the apartheid system .. no drones, no troops
intervening. We the people simply did the right thing.<o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><br /></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit; font-size: large;">Now days
it is not any particular insurance
company, nor any worker, nor any death squads – misery and death by insurance
cancellation is all about your neighbors, friends, family and even the face in
the mirror. </span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit; font-size: large;"><br /></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit; font-size: large;">IRA portfolios that include health insurance stocks are all about ‘your demand’ for
profit. Profit from health insurance does not require me to explain the math.</span></span></div>
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<span style="font-family: inherit; font-size: large;"><br /></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="line-height: 115%;">Living with a chronic disease like MS is a </span><span style="line-height: 24.16666603088379px;">hugemongous</span><span style="line-height: 115%;"> expensive. Too often like trying to dance through a mind field. Hope drives, neuros
encourage, Big Pharm promises but with the dawn of MS cognitive impairment and
you start to miss dotting some i’s and crossing some t’s you open the door to
the profiteers. <o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><br /></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit; font-size: large;">Bean
counters are not the bad guys, nor is the representative on the phone they are
just doing their job. It’s you who demand the profit. Take a look in your IRA,
your neighbors’s IRA, or your family and friends. Find health care companies or medical insurance company
stock and you will find the enemy. <o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><br /></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit; font-size: large;">Of
course this is 2013 and it’s all about money not what’s right. Yet divestment
in portfolios including health insurance, health care, Big Phama, etc could
have the same powerful impact on change to what is right! Profit exploits,
profit has no conscience, profit, not people, cancels insurance. Look in the
mirror. <o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-IugRNNCRJL0/UYhqNUR_lvI/AAAAAAAANAM/Vp9oYD1GbSk/s1600/img_forums_new_2x+%2528160x160%2529jpeg.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" src="http://2.bp.blogspot.com/-IugRNNCRJL0/UYhqNUR_lvI/AAAAAAAANAM/Vp9oYD1GbSk/s1600/img_forums_new_2x+%2528160x160%2529jpeg.jpg" /></span></a></div>
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<span style="font-family: inherit; font-size: large;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: #444444; line-height: 115%;">As always I am thankful to
MultipleSclerosis.net for inviting me to share the longer versions of our story and while our story is specific to MS, sooo many families face similar nightmares caring for special needs children, aging adults and more. </span><o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="line-height: 115%;"><span style="font-family: inherit; font-size: large;">“<a href="http://multiplesclerosis.net/living-with-ms/paperwork-of-living-with-multiple-sclerosis-is-the-proverbial-weakest-link/" target="_blank"><span style="color: blue;">Paperwork of Living With Multiple Sclerosis-The Proverbial Weakest Link</span></a>” Posted by
Patrick Leer—May 15th, 2013<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Patrick Leer</span></i></div>
<div>
<span style="font-family: arial, helvetica, sans-serif; font-size: x-small;">Health Activist:</span><br />
<div style="font-family: arial; font-size: small;">
<span style="font-family: arial, helvetica, sans-serif;">Caregivingly Yours, MS Caregiver @ </span><a href="http://caregivinglyyours.blogspot.com/" target="_blank"><span style="color: #3333ff;">http://caregivinglyyours.blogspot.com/</span></a></div>
<div style="font-family: arial; font-size: small;">
My Lung Cancer Odyssey @<span style="color: #3333ff;"> </span><span style="color: #3333ff;"><a href="http://lung-cancer-survivor.blogspot.com/" target="_blank">http://lung-cancer-survivor.blogspot.com/</a></span></div>
</div>
<div>
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<br />Anonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.com0