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

L’autisme

In France “autistic people are an excluded group within the excluded”. Or so wrote the Council of Europe in 2004 when France was found to have failed to fulfill its obligations to persons with autism under the European Social Charter.
Council of Europe Uphold Autism-Europe’s Complaint Against France 

Is the land of champagne, food, and the city of lights ONLY for the able bodied, able minded?

I found myself sitting in front of my PC with my mouth hanging open the more I read.

“French autistic children and adults are still widely treated as psychotic patients … practices such as the packing of naked non-verbal kids into cold wet sheets …

It is time that the French medical and educational systems came to grips with the reality of today’s autism.”
Outrageous Mishandling of Autistic Children in France 

Maybe there is some cultural aspect I am missing but it just seemed to get weirder.

“autism which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.

Pierre Lellouche, France’s Europe minister recently accused William Hague, the (UK) shadow foreign secretary, of a “bizarre autism” in their discussions.”
Political abuse and the abuse of autism 

However just like anywhere, there are parents and organizations in France working as hard as in any country to make the best of possible worlds.

If you are interested in more about autism in France:
Léa pour Samy 
sesame autisme 
Autisme France 

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

teen autism: a hitchhiker’s guide, pt 1

Over a year ago, I stuck out my thumb and invited one family living with teen autism to share our home.

No, I am not family nor did I have any prior experience living with autism.

Nor am I naïve, for 20 years I have juggled being a Multiple Sclerosis spouse caregiver while basically single parenting an able bodied able minded daughter from 18 months to adult.

So … why should YOU care?

Basically anything comes down to 'how and how much does it effect me'!

So, let’s start there.

AUTISM IS IN EVERY COMMUNITY with an increasing prevalence of 1 in every 150 children (at least 1 child for every two school buses full of kids)

AUTISM HAS "HIGH COST TO U.S. SOCIETY".
“…$3.2 million to take care of an autistic person over his or her lifetime." (Harvard 2006)

(crystal ball of increasing prevalence)
$200-400 billion estimated annual cost in ten years to care for all people with Autism. (Autism Society 2009)

YOUR ... schools, taxes, community services and safety nets are all affected.

Before getting yourself worked up, consider "COST TO PARENTS"
$43,000 annually in the teen years between out of pocket costs and lost income. (Globe and Mail 2007) Non-medical care costs soar as a person with autism ages.

While this hitchhiker appreciates “studies”, he gets apprehensive when “costs” are associated with human beings.

Autism is a spectrum diagnosis so encompassing it seems an ‘undefinition’. Debatable as to causes, treatments, even whether increase is about modern threats or better diagnosis it is confusing to grasp.

In this story, I would define it as extremely challenged communication and social behavior dwarfed by hyperactivity. Yet hyperactivity is ‘medically’ labeled secondary (comorbid condition). IMHO, when someone the size of a 17 yr old spends so much of his time yelling and trying to leap out of his own skin, this hitchhiker wonders if labels are obstructing the view of the elephant in the room.

To be sure, there are and will be many views and much interpretation when the person at the center of it all cannot communicate.

To be continued …

(Author’s note: Approx. 350 words are my self-imposed cap on journal entries.)

Related: living with teen autism

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

holiday kitsch

Living with Multiple Sclerosis and spouse caregiving is not always serious. There are smiles and there is laughter.

Martha Stewart, eat your heart out! Give me kitsch and tacky any day!!!

"It's beginning to look a lot like Christmas
Ev'rywhere you go ..."

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

d-i-v-o-r-c-e multiple sclerosis

Men as spouse caregivers seem to be the media piñata of the week, specifically for spouses diagnosed with Multiple Sclerosis or Cancer.

Feelin' Sick, Ladies? Better Hog-Tie Your Man 
“I've read a lot of depressing news about the state of marriage recently, but none more dismal than a new study …”

'In sickness and in health' has different odds for women than for men 
“Many people have assumed that men are less likely than women to stick by a seriously ill spouse. That assumption might not say much for men. Yet it appears to be true. …”

Men leave: Separation and divorce far more common when the wife is the patient 
“A woman is six times more likely to be separated or divorced soon after a diagnosis of cancer or multiple sclerosis than if a man in the relationship is the patient …”

Thanksgiving morning will mark my 20th Anniversary as a Multiple Sclerosis spouse caregiver. This past July was our 24th wedding anniversary. In December will begin my 59th year as a male.

I am quite sure I am not the only one.

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

caregiver mortality: what if?

Statistics clutter the internet. 30% of caregivers die before those they are caring for. Spouse Caregivers are at 63% greater risk of death than non-caregivers. Family caregivers have been shown to age prematurely, as much as 10 years off a life.

More important … what about the surviving person of need?

Successful caregiving situations are as unique as the people involved. Loss of a caregiver is no statistic it is the unraveling of the fabric of living and caring. 

In our story, we learned you have to plan for the worst. Of course hope, but plan while you can. Talk about when, how, what, why and who will step in.

We began to talk about and develop a ‘best of possible’ plan for Patti. 

Homecare was never an Alamo for Patti. Patti did not want our daughter to have to sacrifice her life as her home caregiver. Past experiments with home care helpers had always ended poorly. Other family or friend options were not 24/7 dependable. 

We began to look at care facility options from independent living communities through nursing homes. 

Assisted living seemed ideal but after visiting we learned it was not an option for Patti’s level of Multiple Sclerosis progression. 

To replace my level of home caregiving necessitated a 24/7 nursing home level facility. 

We kept discovering there was so much to compare and consider. God help families that have to do this under immediate need conditions.

A family caregiver is an economic godsend. Paying to replace their services is astronomical.

Financial and Estate Planning became a MUST. 

Before cognition became an issue of competency we met with a lawyer and Patti assigned me durable general power of attorney. We additionally established secondary people so transition would be seamless should something suddenly happen to me.

Financial planning, special needs trusts, etc are not only critical but can ONLY be done in advance.

No one can predict, but anyone can plan. 

Do you know how your story would unfold, if … ?

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

cluster headaches: physicians change headaches immortal

Preparing for my recent yearly physical I needed to review my notes and records from my Spring episode of Cluster Headaches.

During an episode (when not actually writhing through a cluster headache) I find myself meticulously recording times, duration, intensity, medications, frankly just about anything looking for patterns or clues.

The older you get the more often you find yourself looking at a new face instead of your previous medical guru. When cluster headaches ARE your medical history for 20 years this is never a good thing.

My first question was “What do you know about cluster headaches?” The answer was so scarily uniformed, the rest of the physical blurred.

To decades ago when I first entered these circles of hell, information was nowhere to be found. Of course a large part of that had to do with misdiagnosis.

Years were wasted with misdiagnosis and treatment for sinus headaches, TMJ, allergies, and too much doubt while I screamed into a pillow in our cellar trying not to wake or worry Patti struggling with MS and our sleeping daughter.

 

I was even told that people in pain sometimes exaggerate their pain. Tolerance varies between people. WTF!!!

Finally a change in insurance carriers necessitated a change in primary care physician and I stumbled into not only a physician who believed my descriptions of pain but was willing to work with me to find a solution. Together we discovered cluster headaches.

Zomig finally appeared in 1997. As far as I am concerned Cluster Headache history should be divided by this date, BZ / AZ.

In retrospect Zomig was slow to take affect but who cared the point was finally something could tame the beast eating my brains.

Lost in 1997, I was interrupted by “Mr. Leer, did you hear me?” … “No, I was having a daymare!”

Why doesn't medical knowledge seem to improve? Why do people suffer needlessly? Next patient …

Time to search for another medical guru!

Related entries:

brain writhing on a corkscrew

aka suicide headaches  

cluster headaches - my Achilles Heel 

cluster headaches continued 

cluster headaches June 2005 

cluster headaches December 2004

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

musings: Patrick Ponders ...