- This topic has 3 replies, 3 voices, and was last updated 3 years, 10 months ago by Diana Belland.
May 28, 2019 at 7:03 am #12160Dagmar MunnKeymaster
Although each patient faces a different journey with ALS, we all share the memory of the moment when we received our diagnosis. When I was told I had ALS, I expected to be assured not to worry and that I’d be back to normal life in no time.
Much to my surprise, rather than mentioning rehabilitation, my plan of care included tracking my disease progression, promises of pain relief, and what seemed like a lot of durable medical equipment. It struck me that my physician and staff were in a hospice mindset or had what felt like a deterioration management approach.
Have you had this same experience or feeling?
Read about what helped me reframe my situation so I could focus on my attitude, physical health and learning to live with ALS: http://alsnewstoday.com/2019/05/28/new-kind-als-diagnosis-approach/
July 15, 2019 at 9:05 am #12665John RussellParticipant
Early in my diagnosis I attended a forum in which my neurologist was a presenter. He described all care as being palliative. I guess this has been my mind set throughout. Maybe not the best if you are determined to keep going.
July 15, 2019 at 8:15 pm #12674Dagmar MunnKeymaster
It is too bad when medical professionals have such closed minds about patients and ALS. Perhaps palliative care is appropriate for some patients from the day of their diagnosis through the course of their disease. But every patient is different and deserves individual treatment.
Times change. I don’t believe that cancer or heart disease patients would tolerate this attitude from their medical team – – but it was the norm decades ago. In truth, life itself is a terminal condition! But we don’t conduct our lives as such.
Let’s continue supporting each other and change the perspective – – we are the new ALS patient 🙂
July 16, 2019 at 10:17 am #12675Diana BellandParticipant
I have experienced two ALS clinics since my diagnosis on March 18, 2019 at two different hospitals with three different neurologists. I peppered the young neurologist who made the formal diagnosis with lots of questions about exercise. He told me to go for it, stay active for as long as possible, go visit the Grand Canyon again if I wanted to. A few weeks later, I had my first meeting with the neurologist at the hospital in my home city. I told him I wanted to be “just like Dagmar Munn!” He said, “you can!” He was upbeat and cheerful, and encouraged me to continue with my treadmill walking, leg machines and recumbent stationary bike and even suggested trying the elliptical. I loved his cheerful, supportive manner and took it to mean that he would provide lots of advice on how to live as well as possible with ALS for as long as possible.
But a few weeks later, I attended our monthly ALS Support Group in which my neurologist was a presenter. Like John’s neurologist, my doctor’s presentation centered around palliative care. He briefly mentioned exercise in response to a question I posed. I was disappointed that not more was said about how to maintain your present physical condition for as long as possible.
Everything I have learned about the benefits of exercise for ALS has come from reading Dagmar’s posts, columns, blog and following the links in those posts to research articles and other sites. I think that it would be extremely helpful for neurologists and physical therapists to explain to ALS patients the “science” of physical therapy, how specific types of exercise can work to maintain muscle strength or even improve muscle strength. Each patient is different, of course, but it seems that an assessment could be offered to each patient periodically and a PT program tailored to that patient. Both PTs I have seen, while offering some specific advice, seemed to advocate general guidelines which were valuable, of course. But I wanted specific exercises for specific body parts as I had been used to during the nine months of PT I did following my spine fusion surgery in March, 2018. Following a PT program with specific exercises would provide positive goals. Dagmar, you demonstrated how effective your “air squat” practice has been in terms of strengthening your legs. Your PT told you, “whatever it is you’re doing, keep doing it.”
Although I am beginning to wonder lately if I may be a fast progressor, I’m setting myself the same kind of goals for my next ALS Clinic: try to maintain leg, arm and neck strength through specific exercises.
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