Who I Am And How I Got Here...
In the over quarter century we have lived with MS, one thing has always been true - people with severe MS, regardless of the label du jour, are swept under the rug.
Multiple Sclerosis first appears in our story back in 1985 when my wife, Patti, turning 30 noticed intermittent tingling and numbness in her fingers when working on IBM Selectric II typewriters. Her primary care physician referred her to a neurologist. Soon, the months of tests, including a spinal tap and MRI, started to consume more of Patti’s time than the intermittent symptoms.
I’ll never forget the call from her neurologist’s office that kicked open the door to spousal caregiving. Patti was crying uncontrollably - could I come pick her up?
Crying? Patti never cried, Patti was the strongest person I have ever known. She declined Novacain when getting root canals.
What the hell was Multiple Sclerosis? Holding Patti I glanced through the brochures, “no known treatment” leapt out of the pages.
Believe it or not the next 5 years passed without MS affecting our lives. Patti was apparently fine. Between two miscarriages and one birth, even the intermittent tingling and numbness went away.
Then came Thanksgiving Morning 1989 and our world collapsed. Patti awoke unable to walk and barely able to see or talk.
Holding our 18 month old daughter in my arms that night while Patti was hospitalized with her first major MS exacerbation, I was never more alone and scared in my life.
Patti would rebound but never to the level before the exacerbation. This pattern, including hospitalizations, went on for the next few years.
There were only two kinds of MS back in those days, and through the years that followed labels would change but MS drove on.
Framing our story historically- Patti was “rejected” from the FDA trials of the first disease modifying medication, Betaseron. She was considered too progressed because she had foot drop.
Soon she no longer could walk safely. Previously she had given up driving. She never held our daughter safely in her arms again.
Spouse caregiving always included juggling caring for Patti and basically single parenting our daughter. Career was sacrificed to juggle family.
From FDA approved to alternative treatments we threw everything at MS progression. Home remodeling fought a losing battle with symptom acceleration which included falls, incontinence, and dysphagia.
I always remember her neuro's remark when we asked - is MS fatal? He explained that it would be rare to find MS as "cause of death" on a death certificate in the US; however the most common cause of death among his MS patients were falls and choking labeled "accidental" on death certificates.
To further frame our story, while Dr. Kevorkian was assisting people to die in the early 90’s few noticed that the plurality of his earliest patients were not terminal but diagnosed with progressive MS.
MS cognitive symptoms, including dementia, changed the game for us. Basically denied by NMSS and neurologists in the late 90’s they turned our world upside down.
While sitting at the kitchen table enjoying her lunch Patti was oblivious to flames coming out of our stove. MS dementia could have killed us.
Her neurologist urged me to look at long term care facilities years before I finally lowered the flag on homecare. Increasingly at risk to herself and others, a month before our daughter’s 16th birthday Patti entered a long term care facility in 2004.
My first blog entry was written on April 27, 2004. With a team of people now caring for Patti, she was safe. I actually had the time to speak out for those who disappear from the dialogue of Multiple Sclerosis.
Care facility care is (at least in our story) still spouse caregiving. In addition to being Patti’s medical advocate, I pick her up for outings 3-4 times a week. During those visits I still prepare her for bed, which includes transferring her from wheelchair to bed with a one person unassisted transfer.
Part of the reason for long term care was “what if” something happened to me. Under no cicumstances did Patti want our daughter to sacrifice her life to become her caregiver. ‘What if’ occurred last year when I was diagnosed with lung cancer.
We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. Patrick authored many insightful articles that can be accessed here. Our contributors, Laura and Donna, each wrote a tribute to Patrick and his family.
Does anyone else in your family have MS?