May 1, 2019 at 10:53 am #11777Diana BellandParticipant
I experienced my first ALS Clinic, at the University of Cincinnati College of Medicine, on April 15, 2019. I spent five hours in clinic and was seen by the pulmonary specialist, my neurologist, the social worker, speech therapist, physical therapist and occupational therapist. I like my neurologist immensely because he is, first of all, a terrific listener and communicator. He has a truly warm, caring and positive manner. In my first meeting with him on March 22, I told him I was an admirer and follower of Dagmar Munn and was hoping I could be just like her. He said, “You can!” Of course, there is no way to predict something like that, but I loved his attitude of optimism. He supported all of the exercise I was already doing and suggested that I do Pilates, chair yoga and the elliptical as well. I have scheduled four Pilates sessions at the hospital where I get my therapy over the next six weeks.
While I like my doctor very much and have a positive impression overall of the therapists, I am finding myself seeking answers to questions exercise, nutrition, supplements and participation in clinical trials from other sources including these forums and PatientsLikeMe. I’m seeing the occupational therapist today and have a list of questions for her.
My ALS Clinic schedule calls for visits every three months, alternating a visit with the neurologist with a visit with the full clinic. I am interested to know how this compares with ALS clinics elsewhere. I am also interested to know how to make the most of my ALS clinic resources. For example, should I expect/ask my neurologist to make me aware 0f trials that might be appropriate for me or should I pursue this on my own?
I would like to hear comments from others on what they find helpful about their ALS clinics and how they make the best use of them. I realize that I am not really clear on what I should expect. I will also add that I am considered a patient at the Cleveland Clinic as well (I received my diagnosis there on March 4)and will participate in my first ALS clinic there in August.
May 1, 2019 at 11:28 am #11778Dagmar MunnKeymaster
Congratulations on your first (and successful) visit to your ALS Clinic!
Attending an ALS Clinic is one important practice in the management of our ALS. The clinic set-up eliminates having to visit individual specialists/therapists all month long. Plus it is now accepted that regular visits to an ALS Clinic helps longevity of ALS patients; early intervention, access to medical experts, etc. I doubt that your neurologist will have the time research and offer you trials. You will need to bring in the information and then have a good discussion together.
My one initial disappointment was the realization that their mindset wasn’t to “help me get better.” Their priority is to measure and monitor plus, offer solutions to accommodate my decline. Upon questioning, I discovered that this mindset comes from both the diagnosis, “terminal illness,” and the other ALS patients whom they see, who don’t have hope and are giving up. I call it a hospice-mindset.
However, knowing these same therapists see patients with other diseases and do know how to rehabilitate patients – – I go into ALS Clinic visits ready to pepper them with questions and demonstrate my own positive progress and abilities. This I believe opens the door for them to offer me suggestions, support and encouragement:
Over the years, I’ve heard comments from other patients who stopped going to their clinics because they experienced only measurements of decline and no rehab solutions. We have to be assertive, show that we are wanting help and lead by example. They are experts and we need to have them truly partner with us.
May 8, 2019 at 11:57 am #11881Diana BellandParticipant
Thank you so much for your reply. You put my own thoughts about my ALS clinic into words and confirmed what I had been thinking. From May, 2018 until mid-February, 2019, I had been attending PT sessions twice weekly for recovery from spine fusion/laminectomy surgery, March 2018. I had actually been steadily improving and making gains in strength in several areas. I was used to getting encouragement and praise from my therapists.
Now, I realize that, as you say, there may be a sort of “hospice-mindset” rather than the “let’s make you better!” mindset I have been used to. Your comments helped me to realize that I have to figure out what it is that I want and ask my PT for guidance. I do very much like the young woman who is working with me. She seems very supportive and truly interested in trying to help me maintain my strength and mobility for as long as possible. She has scheduled four water therapy sessions for me. Today I will have my first Pilates session!
Thanks, too, for your perspective on the role of my neurologist in terms of clinical trial information. I’ll try to begin to set aside time to go to websites like N.E.A.L.S and then consult with him.
May 8, 2019 at 4:08 pm #11882Dagmar MunnKeymaster
You are so welcome Diana! Glad to be of help.
Having that PT who “gets it” is so valuable too. Have fun pilates-ing & in the water 🙂
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