tag:blogger.com,1999:blog-19312567.post3343333749873388276..comments2024-01-11T00:28:08.521-05:00Comments on Caregivingly Yours, MS Spouse Caregiver: Chang Shan vs Multiple SclerosisAnonymoushttp://www.blogger.com/profile/14000299655117252000noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-19312567.post-33072307875348799652022-01-31T00:57:38.284-05:002022-01-31T00:57:38.284-05:00Good readGood readRoger Springerhttps://www.rogerspringer.com/noreply@blogger.comtag:blogger.com,1999:blog-19312567.post-75395247871689019682012-12-27T05:51:29.541-05:002012-12-27T05:51:29.541-05:00Hi Patrick: Just curious about the viral theory (...Hi Patrick: Just curious about the viral theory (such as HHV6) any treatments in this regard? Something of interest would be the research behind Gu Syndrome (Chinese Medicine) its emphasis is the pathogenic nature of these diseases -though I am not sure about MS. Thanks. Jbub10https://www.blogger.com/profile/17499013762929131543noreply@blogger.comtag:blogger.com,1999:blog-19312567.post-6244602889518407522012-12-25T04:50:59.809-05:002012-12-25T04:50:59.809-05:00Husband's 'MS' turned out to be Lyme D...Husband's 'MS' turned out to be Lyme Disease. IGenex are one of the best if not the best labs to test it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19312567.post-40280207426398240762012-02-18T12:15:55.391-05:002012-02-18T12:15:55.391-05:00Thank you for your reply, Patrick. :) I hear you, ...Thank you for your reply, Patrick. :) I hear you, but I believe hope *does* have boundaries. To have boundaries is not the same as giving up. Especially when the needs of other family members are at stake. Our country has gone bananas at 'fighting' for 'cures' to the point where financial, emotional, physical strain on others is ignored. We are all mortal & it has never been promised that we will all live healthy to 80 or 90. I am all for attempts at symptom abatement (especially pain!), which applies to MS, and that appears to have worked for Patti for a time. As caregivers, we have a responsibility. if the pursuit of hope is a detriment to others, then the pursuit needs to be limited. p.s. MS sucks. (JB)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19312567.post-65306673169042979382012-02-18T11:33:43.898-05:002012-02-18T11:33:43.898-05:00Excellent point about cost of out of pocket, both ...Excellent point about cost of out of pocket, both financial and emotional for alternative treatment! We are all going to go there. Hope knows no boundary. Driven by hope, Patti's parents paid for and accompanied her to a clinic in Germany for treatment. (Patti left in a wheelchair and returned walking) Likewise driven by hope, bee venom therapy became a family routine for almost two years as I would hold honey bees with a tweezer while stinging Patti two dozen times every two days while our daughter captured escapees in a butterfly net.(Healthiest and most symptom free two years of Patti's MS) Each alternative treatment 'worked' for a while not unlike AMA/FDA treatments before MS progression won out. Of course AMA/FDA treatments have co-pays or you can be reimbursed or deduct from taxes but not hope, it's not fair.Anonymoushttps://www.blogger.com/profile/14000299655117252000noreply@blogger.comtag:blogger.com,1999:blog-19312567.post-23832348642311937832012-02-18T11:15:06.804-05:002012-02-18T11:15:06.804-05:00In 15 years Dave & I have no stone left unturn...In 15 years Dave & I have no stone left unturned and *nothing* has worked for his MS. This disease is an insidious mystery. Dave's mom had a similar chronic illness & it cost Dave's dad over $100,000 out of pocket chasing hopeful rabbit trails (outside of the official medical treatment & costs). He is a broken man & dejected caregiver now. Her disease is worse, he is a shadow of the man he once was & the time they lost 'hoping' (it was all consuming.....heartbreaking to watch) robbed them of 'living'. Difficult balance all the way around. Interesting blog, Patrick. Thanks for the info.....always learning, cautious on hoping.... (Janelle here, I'm confused on the profile part of publishing this post)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19312567.post-6380873979405857972012-02-14T15:37:45.397-05:002012-02-14T15:37:45.397-05:00Amen! but then again over the quarter century Patt...Amen! but then again over the quarter century Patti has left no stone unturned in the quest for hope.Anonymoushttps://www.blogger.com/profile/14000299655117252000noreply@blogger.comtag:blogger.com,1999:blog-19312567.post-12131110497687489022012-02-13T17:21:01.505-05:002012-02-13T17:21:01.505-05:00You're so right about getting our hopes up. Un...You're so right about getting our hopes up. Until someone says "This is the definitive cure, and it's been proven," I'll read the hype, but I won't put any faith in it.<br />Peace,<br />MuffMuffiehttps://www.blogger.com/profile/04542678482763101104noreply@blogger.com