Media, I'm sorry that you are having such a difficult time. I admire you for caring for your mom while going through this, but don't see how you will be able to continue this way without round the clock help. I know it doesn't help, but I wanted you to know that I'm thinking of you.
Hey Media, I'm rather new here and read you're post about being a trumpet player and the moment with the beach ball. This post rang home with me not that i'm a trumpet player but I always wanted to learn. I played drums professionally since 16 and am glad that I got to play with a lot of my heroes here in LA. Ras 1 from Long Beach Dub Allstars, HR from Bad Brains, Suicidal Tendencies, and Les Claypool's Fancy Band. My sister on the other hand is a master trumpet player who works at Disney and countless bands at sourrounding colleges. When my breathing first started to go down I got the idea that I would learn trumpet to strengthen my diaphragm. What a horrible losing battle that wound up being. So in a very real way I feel your frustration. I stopped playing drums in august when it became too frustrating with my right arm not working. Sometimes it's better to quit while you are ahead. Positive vibes coming your way today. Peace
just posted this but wanted to be sure you saw it ...
With gratitude for all your encouragements ... I just got off the phone (after many wrong turns and frustrating calls to various places) and have an appt for my Pals on THIS THURSDAY at the ALS multidisciplinary CLINIC in Pittsburgh's Allegheny General Hospital. They had a cancellation!
Will be reporting in soon with some REAL information. Breathing/appetite/energy continue to decline. But at this moment I'm H A P P Y to be professionals who know about the beast. Thanks again for your help.
Hello, Interesting PMA fact you left me. My husband doesnt have any UMN signs only LMN and he has rarely had temperature issues. But, for the last year to eighteen months he is cold a lot. He will wear flannel pajamas and slippers and sit under a big blanket and be very cold to the touch while my son and I are in shorts and tshirts. The a/c will be on78 so not so cold. I have read that with the breathing decline you can develop temperature issues. Have you heard that? Thanks, Steph
Hi Mediasmart, I grew up just South of Plattsburgh my PALS is from West of Pburgh. We have lived in Maryland, Virginia, and now FL. Getting warmer and warmer. I don't think my body could adjust to 30 below zero for a couple of weeks each year again.
Hi Mediasmart, I see you are a fellow New Yorker! It has been a lot of years since I have lived there but I still miss it. I have been adopted by the South in my adulthood Have you ever considered this disease having ties to the cold climate? I ask because in the northern part of the state where I am from, there are a lot of cases of Huntingtons and ALS. Its curious.
Hi! How are things going for you? I'm going with my daughter to see my dad June 9th. I am kind of nervous since I haven't seen him since the first of the year. I can kind of keep myself in denial by only talking to him one the phone. Reality will probally hit hard when I see him. But, my brother and sister said he hasn't progressed a whole lot since January. I have been working alot more hours then I usually do and even though I love my job I am burnt out. I think I'm on day 6 of like 10 in a row now. Luckily, they are only 6 hour shifts. Take care, Kim
Thank you! But i have had two emgs within past few months. First one right arm right leg second one right arm left leg and tongue. All completely normal. But i have "atrophy" of my thenar muscle on my dominant hand. Its smaller than my left hand but no weakness really that i can tell. So its very confusing to me :-/. My right foot is also way skinnier. And i have been twitching randomly all over my legs more frequently.
Hi! I'm sorry to read that you are up having a bad night. I'm actually at work until 6 am at our local hospital where I work the switchboard. The phone doesn't ring very much at night but someone has to be here to moniter alarms and handle the few calls we get. I also worked earlier day from noon-6pm. Long day! I brought my Ipad along. Hope you starting feeling better and can get a little rest. Kim