Sunday, March 08, 2009

MS Awarness: right to die, right to live

Debbie Purdy, diagnosed with Multiple Sclerosis in 1995 has watched her life progressively impaired from jungle trekker and parachutist to non-ambulatory and dependent. She's stirred up a legal and media storm in the UK trying to protect her husband from prosecution to help her to travel to Dignitas, a Swiss assisted suicide clinic.

In the US, Dr. Jack Kevorkian assisted in the choices of over a hundred people to die. Multiple Sclerosis and Lou Gehrig's disease
(ALS) were the most common diagnoses.

One of those with MS wrote that he feared living in "one of those rat-infested nursing homes to be warehoused by `Nurse Ratched,'", others worried over the toll of years of long term care on their loved ones, others feared struggling alone.

I can understand people fearing that if they become disabled with Multiple Sclerosis they'll have no choice in how they live.

Our culture and media is obsessed with able bodied mythology. Even MS specific publications and pharmaceutical marketing slant toward MS-lite, leaving MS-max in a shadowy unknown.

In our story, yes Patti’s life has dramatically changed. She did not know that Multiple Sclerosis would by her mid 40’s mean that each day she would be dependent on others to get out of bed, to get dressed, to cut up her food and help feed her. Non-ambulatory, every bladder and bowel movement would be in her pants and necessitate others to clean and change her. Visual and cognitive impairment would block her into a world within a world.

Yet for Patti to survive every such day and want to get up and face another takes heroic courage and a will to live that few of us may have.

We all from individuals, to families, to societies need to focus more on caring with dignity.

MS or not, we are ALL going to one day know or love someone who can no longer take care of themselves, even ourselves.

Caregivingly Yours, Patrick Leer
web site:
musings: Patrick Ponders ...


  1. This is a wonderful post and timely. It should be individual choice. I worry about the day when that may change and we are all only valued by our contribute to society. Who decides what that contribution is?

  2. Great post! I loved those sentiments "caring with dignity". If only more people would understand exactly what that means. (Hugs)Indigo

  3. Hello Patrick,

    I agree with Julie and Indigo that this is a great post.

    We all need to be more aware that we need each other and there is nothing finer than to love and respect and care for each other.




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