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cairn175

Active member
Joined
May 1, 2012
Messages
39
Reason
PALS
Diagnosis
03/2012
Country
US
State
washington
City
chehalis
Just want to vent...I am failing quickly. Just diagnosed 3-27-12 & can no longer walk, stand, situp, and very very little arm movement and now losing my voice. I'm on hospice care now (in my own home) & they have been great. I had a catheter put in and it has been good...saved me so much tranfering to and from the Hoyer so often. It is getting harder for my hubby to get me in the sling as I am just dead weight. I am so tired all of the time. I am also coughing a lot..last night I coughed for over 2 hours..needless to say I was exhausted. Has anyone else had the coughing problems?

This site has been so helpful to me. It helps me stay sane (or as sane as I ever was).
I hope you all have a good weekend...it's pouring down rain here in Washington.

Thanks for listening.

Leslie
 
Oh Leslie I am so sorry! This disease is truly evil and so unfair!
I will keep you in my prayers
Sending you strength
Nicole
 
Thanks for the prayers..they are needed.
 
Prayers for you Leslie!

Judy
 
Hi Leslie, sucks for all of us, doesn't it... wish there were some magic words to help you other than I know what you're going through, though my progression is slower. Got stuck on the toilet with the seat riser yet again today at my Mom's, can't use the toilet in my house, they both are on different floors... well the "downstairs" bath has 3 steps into it, and haven't been able to use that for a few months now.

Do you have a cough vest and a cough assist machine? Get both, as from what I've been told, the vest helps break up mucous, and the machinei helps pull it outta you.

I've been a lot more tired lately, even though I'm still somewhat mobile (can't walk, and losing ability in my fingers)... everything is so much more work for our muscles that we have left.

Saying a prayer, and come to the "Come for tea" thread for some chit chat...

Helen
 
I'm sorry, Leslie. I'm Kate and I'm 39. I have to wait till Aug. 27th to see an ALS specialist. Do you have a good support system? A Pastor, friends, family? This can be invaluable. I'm sorry for the fast progression. I'm alone most the time so maybe we could talk. Will pray for you!
 
Leslie.....I am like Helen in that I wish I too had some magic words for you. I am reminded of the movie Tombstone (I think it was) with Val Kilmer as Doc Holiday. When Wyatt Earp said to Doc that all he wanted was a normal life & Doc said....there is no such thing as a normal life....there is only life. We all have our ups & downs and it seems like some people have more ups than downs & other people have more downs than ups.
Stay as strong as you can & rant away!
The sun is beating down where I live and we are in the midst of a drought....high 90's today and almost 100 tomorrow.
 
Kate, keep calling the neuro's office to see if they have cancellations... squeaky wheel and all. Hoping that you don't get this d x! I only had to wait about 10 days to see the ALS specialist, as my neighbor is also a doctor at that hospital...
 
Leslie, cough assist and Bipap are my suggestions, to relieve the symptoms. D
 
Leslie,

Sending you warming thoughts, gentle hugs and many prayers,

Toto
 
Will be praying for you Leslie.
 
Thanks for the support. Since I am on hospice medicare won't pay for cough assist machine but checking with MDA for one.
Kate, I agree please call the doctors office & put your name on the list 4 any cancellations. Kate I woulr love to chat anytime.
Toto..so glad 2 see a message from you.
Helen..I willcome for tea & cookies.
 
Leslie...it is fast and mean. Bob coughed too, not all the time though. It seemed to come in stages. Thinking of you and sending you warm thoughts. Yasmin
 
So glad the urinary catheter has been a help to you.
 
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