RX laughter / MSFocus magazine

No doubt that laughter is medicine and Multiple Sclerosis Foundation’s MSFocus Magazine, Spring 2011 is all about laughter and living with MS.

It’s also kind of cool to find Patti and myself on pages 50-51, “Mooned By Snails”.

“…If you ask us whether it was easier to laugh together before MS, we both will smile and evoke the memory loss defense. MS brought new dimensions; our sense of humor evolved. As a caregiver, I discovered the reward of a slapstick laugh the first time I ran over my own foot with a wheelchair. Patti’s MS-induced pseudobulbar affect flips emotional tables – she laughs at funerals. …

… Oh, we are never boring to be around. Humor as intervention can disarm anxious strangers, friends, and family.

‘Common sense and a sense of humor are the same thing, moving at different speeds. A sense of humor is just common sense, dancing.’ ...

A giggle can change a mood; a guffaw is as good as any medicine. You cannot do much about multiple sclerosis, but you can do a lot about living with multiple sclerosis. Some situations are just funny, and sometimes as a caregiver it takes a little clowning around to get the laughter going …

… EDSS>8 and ADL<1 may be quantitative measurements of Patti’s MS, but I would like to think that laughter is a better measurement of quality of life. And, well, sometimes it takes a little help from those darn snails.”

To view on line edition click MSFocus Spring 2011 also available in pdf format 

While the blogosphere has always been home for Caregivingly Yours, it was both challenging and fun to rewrite an entry as a magazine article. Special thanks to Multiple Sclerosis Foundation (MSF) for believing our story of living with MS was worth including. 

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

Caregiving Counseling

Sharing our story and its trial and error learned lessons never ceases to amaze me, “Oh! The places you’ll go!” … like a list of top 50 counseling blogs.

From The Counseling Courier

The Internet provides a great venue for counselors … You can pursue counseling in school systems, in personal growth or relationships, in substance abuse or other addictions and in rehabilitation or eldercare and grief. The following list of top 50 counseling blogs takes a look at blogs in each of those categories. [click to continue…]

Below are their designated top “Caregiving Counseling” blogs:

About Senior Living: Sharon O’Brien, MA, LPC, is a licensed professional counselor with a private practice in Portland, Oregon. She helps people cope with changes that come with age in this blog.

Caregiving 101 Blog: caring for the elderly in their home, they taught in–services for doctors, nurses, the staffs of hospices and home health agencies, sharing tips and unique ideas for caring for people with dementia.

Caregiving: The Sandwich Generation: Learn from this writer’s experience what it’s like to provide caregiving to a person through Alzheimer’s, Parkinson’s and coronary diseases.

Caregivingly Yours: Sharing the trial and error learned lessons of a spouse caregiver dealing with Multiple Sclerosis and with teen autism.

David Fireman’s Blog: Part of Legacy Connect, a network for grief support groups, expert advice on grieving, mourning and bereavement, this blog looks at those topics in detail.

Eldercare ABC Blog: Eldercare ABC began as an idea based on empathy and community. This blog taps into the extended social network idea for support.

Family CareGiver Blog: This blog is written by caregivers, for caregivers, offering fresh content, news and helpful studies to its readers.

Hospice and Caregiving Blog: You’ll find stories and articles about the end-of-life experience at this blog.

The Caregiver Blog…your C.A.R.E.S. Share your thoughts or questions related to caregiving for the disabled and chronically ill at this Community Advocacy for Resource, Education, and Support blog.

The Caregiving Zone: to provide holistic education as well as one-on-one consulting for individuals who are facing their own or another's serious or potentially terminal illness. 

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

cognitive function multiple sclerosis

“It’s one of the most sensitive topics among people with MS—we’re talking about how MS affects your mind, about cognitive function …”

“Cognitive changes are thought to affect about half of those who have MS ….”

MS and the mind: The latest research on cognitive function 

Reading through the above article in National Multiple Sclerosis Society MOMENTUM magazine, winter ’09-’10, I had mixed feelings. Certainly I was glad to read of 4 pages of current and pending research yet I was baffled as to why the ‘major players’ have been so slow in coming around.

Last winter the Multiple Sclerosis Foundation invited me to write an entry for their MS FOCUS magazine entitled A CAREGIVER’S PERSPECTIVE, MS AND COGNITION
   “…We were swamped in physical adaptations, and in the early and mid-1990s, cognitive problems associated with MS were simply not mentioned very often…”

In the NMSS Momentum article under “treating cognitive change” they mention looking at drugs used to treat Alzheimer’s disease. A study of donepezil (Aricept) is recruiting people with all types of MS.

Six years ago Patti’s nurse practitioner suggested trying Aricept. Her neurologist hemmed and hawed about lack of research but acquiesced. Not only has Aricept slowed cognitive progression to the eye of the observer but it has demonstrated through MRIs a slowing of rate of cerebral atrophy.

The frustration with cognitive function is that the person affected is the last to be aware. Family, friends, and medical contacts have to find a way to cross this line. I am not sure that patience is a virtue in fighting this symptom of Multiple Sclerosis.

“Of all the things I've lost, I miss my mind the most” Mark Twain

video: Multiple Sclerosis cognitive challenges (3:23)

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

EVERY DAY is MS Awareness Month / Week

EVERY DAY is MS Awareness Month and/or Week around here. Recently, March has become associated with public awareness of Multiple Sclerosis.

“MS: Now You See It, Now You Don’t,”
MS Education & Awareness Month sponsored by Multiple Sclerosis Foundation (MSF). Raise awareness with family, friends, and community by highlighting the unpredictable and often invisible nature of multiple sclerosis. To order MS Awareness kits contact MSF at (800) 225-6495 or annette@msfocus.org


“Move It!”
MS Awareness Week sponsored by National Multiple Sclerosis Society (NMSS). Click blue link to find your local chapter for their specific daily events for the week. Patti’s favorite kind of MS Awareness “hospitality and snacks” are featured at our local chapter’s open house.

“This March, Be Visible – Because MS Symptoms Often Aren’t.”
Humbled by emails I have received following my article in MSFocus Winter 2009, “A Caregiver’s Perspecitive: MS and Cognition”, I believe sharing a few excerpts will help understand the role of “be visible”.

“I read your article … and I know that even though I live with the MS horror-show, I still have something to say to others. You did something that I was told years ago: "Just say it."”

“I was happily surprised to see your article … every day is a NEW adventure.... (my husband) has lost some cognitive function as well as other things but I always think IT CAN BE WORSE...we manage but thank you for your words......very comforting. A fellow caregiver”

“Your article made me stop and it took my breath away. … I was fine and going about my life … worked for 20 years … had a perfect work record. All of a sudden, I was getting fired. I couldn't remember things anymore, multi-task or answer phones w/o forgetting.”

“I have read some of what you have lived with in the past years. I can relate. … I am the only caregiver of my husband. … (Our families) do not understand why he acts the way he does.”

“My wife, living with MS for 36 years, now has severe cognitive problems. … It has been an awful struggle for both of us. After reading your article I felt I’m not alone. I identified with everything you wrote …”


Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
.................................................................
answer key to MS Awareness a crossword puzzle

MS and Cognition: a caregiver's perspective

Thank You, to the Multiple Sclerosis Foundation for including “our story” in their Winter 2009 issue of MSFocus Magazine. View “A Caregiver’s Perspective: MS and Cognition” in MSFocus on line, pages 36 and 37.


Or view the article below:

Our then elementary-school-age daughter discovered the first clue: Her mom laughed hysterically at the word “brick.” Then came the day I opened our monthly credit card bill to find $2,000 in charges from a home shopping network.

Homecare agencies cancelled our aides due to incidents involving my wife, Patti’s, verbal and physical outbursts. Finally, I returned home one afternoon to discover our stove top on fire while Patti sat unconcerned or unaware at the kitchen table.

Looking back, were there earlier clues that my wife’s MS symptoms might not stop with the physical? Yes, but who knew to look? We were still reeling from the physical symptoms of Patti’s diagnosis and trying to learn to live with MS as a family. In a few short years, my wife had become wheelchair-bound. We were swamped in physical adaptations, and in the early and mid-1990s, cognitive problems associated with MS were simply not mentioned very often.

Now researchers tell us that MS can, in some cases, cause permanent cognitive problems. In Patti’s case, those problems are profound. (click to continue …)

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

caregiving: multiple sclerosis and cognition

Special thanks to the Multiple Sclerosis Foundation for enabling our story to bridge from the blogosphere to print media.

"A Caregiver’s Perspective: MS and Cognition" will appear in their Winter 2009 edition of MSFocus Magazine. Below is an excerpt:

"Our then elementary-age daughter discovered the first clue: Her mom laughed hysterically at the word “brick.” Then came the day I opened our monthly credit card bill to find $2,000 in charges from a home shopping network. Homecare agencies cancelled our aides due
to incidents involving my wife, Patti’s, verbal and physical outbursts. Finally, I returned home one afternoon to discover our stove top on fire while Patti sat unconcerned or unaware at the kitchen table.

Looking back, were there earlier clues that my wife’s MS symptoms might not stop with the physical? Yes, but who knew to look? We were still reeling from the physical symptoms of Patti’s diagnosis and trying to learn to live with MS as a family. In a few short years, my wife had become wheelchair-bound. We were swamped in physical adaptations, and in the early and mid- 90s, cognitive problems associated with MS were simply not mentioned very often..."

After years of journaling it was fascinating to work with a different medium including submitting copy, editors, revision, and such.

This journal / blog began, in part, four years ago because the challenges of people with progressive and severe MS, their caregivers, and families were invisible to mainstream MS publications.

Thank you, Multiple Sclerosis Foundation for this opportunity.

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...