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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
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,288
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
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
 

cairn175

Active member
Joined
May 1, 2012
Messages
39
Reason
PALS
Diagnosis
03/2012
Country
US
State
washington
City
chehalis
Thanks for the prayers..they are needed.
 

Judith Ann

Distinguished member
Joined
Jan 22, 2012
Messages
134
Reason
PALS
Diagnosis
11/2011
Country
US
State
AR
City
Wickes
Prayers for you Leslie!

Judy
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
State
MA
City
Southborough
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
 

Hi Skyehy

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Joined
Jun 13, 2012
Messages
38
Country
US
State
OK
City
Tulsa
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!
 

CathyP

Active member
Joined
Feb 29, 2012
Messages
91
Reason
PALS
Diagnosis
12/2011
Country
US
State
Kentucky
City
Small Town in Western KY
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.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
State
MA
City
Southborough
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...
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
667
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Leslie, cough assist and Bipap are my suggestions, to relieve the symptoms. D
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
Messages
1,033
Diagnosis
11/2008
Country
US
State
Kansas
City
Emerald
Leslie,

Sending you warming thoughts, gentle hugs and many prayers,

Toto
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,527
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
Will be praying for you Leslie.
 

cairn175

Active member
Joined
May 1, 2012
Messages
39
Reason
PALS
Diagnosis
03/2012
Country
US
State
washington
City
chehalis
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.
 

cervus

Senior member
Joined
Mar 18, 2011
Messages
935
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
City
Leduc County
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
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
So glad the urinary catheter has been a help to you.
 
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