Thursday, March 07, 2013

where is the cure for Multiple Sclerosis

March is designated Multiple Sclerosis awareness Month. This March is our 28th year of living with Multiple Sclerosis as a family since Patti’s diagnosis in 1985 of ‘probable MS’ ... where is the cure?

She cried so uncontrollably upon hearing her diagnosis that her neurologist’s office called me to pick her up rather than have her try to drive.

This PSA by NMSS first run in 1994 is IMHO the best ad I have ever seen for MS. It portrays a year living with MS. Now multiply it by 28 and you get the idea.

Since 1989 ‘spousal caregiver’ has supplemented the label husband. Last year a diagnosis of lung cancer was added to my labels.

Since this could be my final MS Awareness month, I’m going to speak my mind.

Multiple Sclerosis comes down to ‘activities of daily living’ when you lose your abilities for dressing, eating, ambulating, toileting, and hygiene you become dependent. For the last several years Patti lives in a long term care facility. She requires a team of assistance to complete any and all the activities of daily living. MS cognitive symptoms including dementia have made piecemeal of her brain, preventing her from even remembering I have lung cancer.

“Cruel and unusual” punishment is prohibited by the Bill of Rights to the US Constitution. Patti did nothing to warrant life imprisonment in her own malfunctioning and declining body. 

What about the collateral damage of MS to family from my shortened life expectancy to our daughter.

Since Big Pharma found a new and profitable market in maintenance medications for some people with milder Multiple Sclerosis there has been a tendency to sugar coat MS. That coupled with the disappearance of those with severe MS from the dialogue whether in social media or mainstream media, I worry that focusing on the cure is taking a back seat to the more profitable maintenance medications. 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

3 comments:

  1. Well written Patrick. And sadly, I kind of understand and have the same worries. My thoughts are with you and Patti!

    Take care,

    Jennifer

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  2. This is something I've been saying for years -- there will be no reason for Big Pharma to find a cure as long as they are making mucho $$$$ with their expensive DMDs! I was once called out on this by another blogger who was actively involved in a study (for RRMS drug) and believed that pharmaceutical companies are doing a great deal to find a cure. I no longer follow that blog! I wish this awareness month would rattle a few cages in the Big Pharma world.
    Peace,
    Muff

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  3. I remember seeing that commercial on AFN overseas in Wiesbaden. That psa creeped me out.

    ReplyDelete

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