lisa-karczewski
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https://smanewstoday.com/mestinon-pyridostigmine-bromide/
smanewstoday.com
Mestinon (Pyridostigmine Bromide) – SMA News Today
*** SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always … Continue reading
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https://academic.oup.com/braincomms/article/5/1/fcac324/6884168
academic.oup.com
Stam et al. report on the placebo-controlled, double-blind, cross-over trial in 35 patients with spinal muscular atrophy types 2–4 to investigate the safet
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How do people manage happiness when they have no family to help them out?
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Having a sense of humor, being real and exhuding confidence is what I’ve found brings on the cool. I’m a mental health clinician and work in a confinement setting with incarcerated juveniles. These kids are as tough as they come but I have managed to become totally cool in their eyes. For example, I have hard core, 3rd generation “gang bangers” drawing pictures for and of me, holding doors, running up to give me a hug and telling their peers what a “cool” counselor I am. What I believe makes me so “cool” in their eyes is my ability to be kind, to listen, to be truthful and to do it all with a smile, a sense of humor and a willingness to be totally open about my disability, vulnerability and all. Usually within the first few minutes of meeting one of the kids, the questions start coming…”Why do you ride that? Can you walk? How fast does that go?” I answer all their question with full honesty and throw jokes in about the pathetic sound of my scooter horn and the millions of time I have run over people’s feet. By the end of our time together I have a “cool” rating of 10 and they have plans to hook my scooter up with a nitrous system!
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This is my first post so hello to all! My name is Lisa Karczewski. I’m 43 years old and have SMA type 3. I lost my ability to walk/stand 10 years ago after I fell and broke my left tibia bone. I use a motorized scooter full time and transfer from one place to another. Anyhoo, about three years ago I had a suprapubic catheter put in. It was getting too difficult and way too time consuming for me to have to transfer on and off the toilet every time I had to pee. Getting the catheter put it was a great move for me and ended up saving me so much time, effort and embarassment. The only problem is that I have a constant UTI. As soon as I take an antibiotic to clear it up, it immediately comes back. My urologist prescribed Uribel to treat the UTI pain and frequency and told me to drink a lot of water and cranberry juice and also take a probiotic. Does anyone have any experience with Uribel or any other tips to deal with UTI’s?
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Thank you, Mike for telling us about this medication. I have been getting Spinraza since about 2018 as well. I just spoke to my neurologist and he said that he would be open to trying this additional med with me. I see him at the end of this month so we will talk about it more then. He did say one of the side effects is the dreaded diarrhea. I live in Phoenix.