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dalvin

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Sep 12, 2013
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956
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PALS
Country
US
State
va
City
richmond
Just got back from a visit to the ALS clinic. More bad news and it's getting to me a little. Neck muscles are so far gone that they've prescribed a neck brace to hold my head up. One of those strange looking contraptions with lots of metal involved. Then they did the respiratory fvc test down to just 25 percent. Had been 60 in Dec. was low in March but thought it was because of the respiratory infection in February. Just been hard this week, today's stuff and realizing just how bad my arms and legs have atrophied. Can't say it enough, ALS sucks:(
 
I'm so sorry, Dalvin.
There are plenty of other head braces to choose from.
Hang in there.
 
I am sorry too. Please do wear a neck brace if you need one sister did not ruptured a disc and needed dangerous emergency surgery. Keep trying until you get a good one. Which one did you get?
 
thanks Mike. been using one of those foam type neck braces to support my neck for driving but it doesnt work very well. The doc said my neck muscles are very weak
 
>Can't say it enough, ALS sucks


al hamdulillah! In any language it *sucks*.

Hang in there Dalvin!
 
Hang in there Dalvin........you toughed it out to this point, and I sense there is still some fight left in you!
I am finding that attitude has a lot to do with my overall health dynamic, sometimes I even will lie to myself, just to keepon keepinon!
Am posting something to cheer you up......
 

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Nikki, havent picked it up yet. going to prosthetics store tomorrow to get it. The script says Head master cervical collar. The pic he showed me had lots of metal in it and plenty of padding. once I get it I'll try to post a pic. The real shocker though was the decline in resp.
 
As pALS lose muscle tone in our lips and cheeks, FVC tests become less accurate. So it may be better than what it registered. Do you have a cough assist? I credit mine with the fact that i have any lung capacity left. Sorry you're feeling down. Let us know how you like the head rest. I'm also having a floppy neck problem.
 
dalvin....realize your fvc is low but the question is how do you feel....with a good neck brace will your breathing be comfortable for you...as pointed out to me the number means nothing, its how you feel....sucess
 
I'm sorry Dalvin. How are your feeling over all?
 
I'm sorry Dalvin. How are you feeling overall?
 
feel tired all time now. slightest activity, ie, taking a shower, tirese me out to the point I end up falling asleep, some times before I can manage to get any clothes on. breathing is shallow and any attempt to breath even a little deeper triggers coughing. I know that the pulmonolist at the va is requesting a cough assist and same the rt at the als clinic is now doing the same. just waiting on things to go through. only thing that really works the right way now is my fingers,
Like the pick Mark
 
So sorry Dalvin, I am having major breathing issues too, double whammy as you call it. can't stay awake, I have to go to the clinic next Friday and I am dreading it, I understand how out of breath a shower or a walk across the room can get you. You are in my prayers, ALS does really suck!
 
Hey my friend, If you went to UVA and they using the old equipment than that respiratory function may not be accurate. I'm going directly to the pulmonologist at UVA next Monday. It is a fair question when they test you to ask the last time that equipment was calibrated. Good luck my friend.
Hollister
 
Hi Dalvin,
All of us are right there with you. My sister and grand daughters visited me yesterday and couldn't understand what I was saying. My speech is almost gone. Thank god my 4 year old niece was able to translate for me... UNCLE PAT SAID...
Hang in there ok.
 
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