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How to Conquer the Gap Between Diagnosis and Accepting Your ALS
Hello all! I’ve noticed that many of our new members have been recently diagnosed or are in their first year of living with ALS – – so, I thought this column of mine could be of help.
Shortly after my doctor told me I had ALS, I faced the daunting task of sharing the news with friends and family members. I hemmed, hawed, and hesitated for many reasons, but my biggest challenge was confronting the reality of my diagnosis. I knew that when I told others about my ALS it would become real — and I would have to accept that I had ALS.
My friends and family members certainly deserved to know about my diagnosis, but first I had to conquer my mental gap between knowledge and acceptance.
Have you had the same experience and feelings? What helped you move towards acceptance of your ALS?
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5 Replies
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It appears that everyone approaches ALS from a different direction. To some extent I am still in denial, but my denial affects my willingness to embrace help from the ALS Association, not me relationship with friends and family. When I was diagnosed in August of last year I send the following email to everyone I knew (100 of people). I only got back a handful of replies about my broken leg. 🙂
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August 2018
Dear Family, Friends and Colleagues,
As many of you know, my great-grandparents, grandparents, aunts, uncles, and Mother have all lived into their 90’s. My mother will be 94 this September. I am 70 years old and in great shape, usually biking 3 or 4 miles a day. So my expectation was to have another 20 to 25 years of retirement. That is still possible, but not likely.
For the past 8 months I have been on a quest to get to the root cause of my difficulty walking. There is no pain, just difficulty walking. It started about nine months ago when I noticed that my right foot lacked the strength to stand on my toes. About a month ago, after six different doctors, three MRI’s, numerous X-rays, various blood tests, a nerve conduction test, and an Electromyography (EMG), I received the presumptive diagnosis. The focus, since then, has been on eliminating other diseases that mimic its symptoms. Last Wednesday, the final results came in eliminating all of the mimics.
I have Amyotrophic Lateral Sclerosis (ALS), the same disorder that afflicted Lou Gehrig and Stephen Hawking. It afflicts 1 in every 50,000 people, each year. That’s one of the reasons why the search took so long. The MD’s started by eliminating the most likely causes and progressed to the least likely, until only ALS was left.
While current literature suggests a life expectancy of two to five years from the onset of symptoms, actual life expectancy is quite varying. Steven Hawking lived 55 years after his onset of symptoms, Lou Gehrig lived three. I’m not aiming for another 55 yrs, but have every intention of beating Lou Gehrig. 🙂
So what does this mean? Right now, very little. I have been accepted into the Duke ALS Clinic. It is a world class Clinic with patients from all over. It’s run as a team sport. I meet with 6 different specialists, periodically, each of whom evaluates some aspect of the disorder’s progression. On my first visit, I was told numerous times that my progression appears to be very slow. Their collective rating ALS Functional Rating Score (AFRS) was 45 out of 48, 48 being no issues or concerns. In fact the only thing they asked me to do was to gain 10lbs. I am working on that. I’ll see the team again in about a month and then about every three months, assuming the progress continues at it’s current rate.
No doubt, going forward, there will be changes, but not this year or next. I asked the Clinic about travel restrictions over the next eighteen months and was told to have fun and eat a lot. My wife and I have travel plans through 2019. We are not changing any of them. Assuming eating and drinking go hand in hand, I asked about wine consumption. They said alcohol has no impact on progression, so feel free to imbibe. I plan to. 🙂
At this point there is no need for condolences or even a response. Since retiring for the last time in May of 2015, pretty much every day has been a great day. I’m not expecting that to change any time soon. In any case, I intend to master my circumstances, not be mastered by them. Hopefully our paths will cross again.
PS. I have seen the speed at which information circulates, often morphing along the way. I wanted to share this with all of you simultaneously, reducing the likelihood of me hearing about my broken leg. 🙂
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Bill,
Your email to friends and family was great. And yes, we pALS all experience different responses. Some are in denial themselves, or don’t know how to respond and then there will be a few who show up “no matter what.”
I envy you – – being able to be seen at the Duke Medical Clinic (Dr. Bedlack is my hero!). It sounds like you are doing all the “right things” – – good doctors, 3 month visits, etc. Good nutrition, regular exercise, finding a new purpose, reducing stress and sleeping well… are all beneficial to living well with ALS. I am in my 9th year and feeling good and maintaining my ALSFRS-R scores.
This forum site is full of positive thinking, like-minded folks. You are in the right place and we are all helping and supporting each other.
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It’s a great post Bill!
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Thanks, Dagmar. At 9 years in, you are an inspiration to me. I am stable and still walking though not well, It never occurred to me that I could be 9 years in.
Just before the August 2018 email went out, I called my Mom to give her my diagnosis. I was a bit stressed about the call, not knowing how she’d take it. Her only response was “Well, I have a few more years left in me. As long as you out live me I’ll be fine”. I told her it was a deal. Two weeks later she called me and told me she had recently met an 108 year old lady and had decided she was going to live to at least 108. I told her that we may have to renegotiate our deal. 🙂 She laughed. I am still not sure if she is serious. 🙂
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Wishing both you and your mother health and longevity – – 🙂
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