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cillenorman

New member
Joined
Apr 12, 2017
Messages
1
Reason
PALS
Diagnosis
06/2016
Country
US
State
MS
City
Newton
I have been diagnosed since August of last year. Currently my arms are totally impaired. I can still use my fingers. EMG shows active deterioration in my neck, upper back, upper chest. I am having bowel slowdown. My legs, breathing, and speech are fine for now. I read on various forums about PALS still working, exercising, swimming, etc. This makes me feel like something is really wrong with me. I am exhausted 24/7. Getting dressed by my caregiver, tending to toiletries, taking a short walk, and being fed breakfast as Nd lunch necessitate a nap or couple of hours of bed rest. Does anyone else stay this exhausted or am I doing something wrong?
 
Everyone is different and the exhaustion is certainly a problem for many.

Things to look at: that your breathing truly is fine. Have you been tested lying down? Had night time oximetry?

Pacing yourself which it sounds like you are doing.

Accepting help to perform tasks so you save your energy for enjoyable activities. Sounds like you do that too.

Is eating tiring? Is swallowing difficult at all? Do you need easier things to eat? How long does a meal take?

Just thoughts. I get tired too very easily and my sister napped every afternoon for a couple of hours

Welcome to the forum
 
Sorry to hear fo your dx but welcome.

I agree with Nikki about having your breathing checked. My PALS took naps everyday, sometimes twice a day. Once he could tell that his breathing was affected and started using the Trilogy all night every night, the naps stopped. He probably should have used the Trilogy sooner, but resisted.
 
I am one of those people who is at the pool frequently. So here is my observation about me. I feel tired all the time. I am constantly yawning. I sleep 8 to 10 hours a night. But when I go to PT or aquatherapy, moving around makes me feel energized. I am tired when I get back and take an hour nap, but I feel good and feel like my joints are moving and my muscles are stretching which I believe is keeping me pain free.
 
I'm the opposite. Any activity hurts my muscles a lot. Even the easiest pool exercises. My back is in constant pain and so are my lower legs. However, being in the heated pool makes me feel so much better psychologically that I do it several times a week.

Today I went to a memorial service for the Pastor who came to my house on Mondays to lead Bible study. I knew sitting in the pew for 90 minutes would bother my back but the value I received was worth it.

I've been running on empty since August with garage sales, moving, unpacking, repacking, remodeling, buying a van, and doing 90% of it myself. I know I need to slow down. Falling and spraining my "good" ankle just before I bought the new condo and had to evacuate to Orlando because of the hurricane didn't help but I just kept going as best I could.

I wouldn't recommend doing things to exhaustion but sometimes people have no choice. Yea, there's always a choice but for someone single with no kids, I have to do a lot.
 
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