Fatigue

[Guest]

Good morning!

The farther we get into this ALS battle, the more I realise everyone's journey is different, but I'm looking for some feedback on fatigue. My sister's energy levels have dropped significantly in the last month or so. This last week she described going to work and being so exhausted that she couldn't even think straight. Our niece (who is living with my sister this summer) now drives my sister to work everyday so that she doesn't have to walk as far from the car to her office and because driving is getting tiring for her now. Yesterday we were all up at her house and we went shopping for bathroom tile (my husband and my brother-in-law are creating an accessible bathroom on the main floor of my sister's house). Anyway, she would get exhausted after about 30-45 minutes of shopping (even with her walker and sitting in it much of the time). I'm sure the fatigue is getting her down...which then compounds everything. I'm so concerned about her and want to help her any way that I can.

I want to find out from all of you about your experiences with fatigue, how it's effected you, and what (if anything) you were able to do to either counteract it or deal with it. Please help! Thanks!

Marcia

 

[Guest]

curious

Why is you sister working and why are you taking her on long outings?

 

[Guest]

fatigue

Hi Marcia:

Gail is exhausted most of the time. She was always a non stop kind of girl. She still fills her days with as much as she can, but she is really tired. She still trys to walk everyday, and she still mothers 3 kids (which is tiring for the best of us). She is determined to keep busy as best she can.
She finds the nights to be the worst (for thinking too much):-? , so she stays up late until she can't keep her eyes open any more, and then she has a good nights sleep right through. This could be adding to her fatigue, but it is clear that the ALS is causing alot of it, for sure.

Barb :-|

 

[Guest]

Hi Tracy

Hi TRacey:

I thought I would just add to your question you asked Marcia. Even though my friend Gail doesn't have a job, she wants to go on long outings and do as much as she can while she still can. She pushes herself to get out there and live. She gets tired but she gets out and does the things she wants to do. keeping busy, keeps her mind off of the sad thoughts that ALS can bring.

Barb

P.S. Had a few beers on my back porch over the weekend, did you?. :-D :mrgreen:

 

[Guest]

change

Do you have an ALS patient support group (not docs or social workers) near by that she can drop into and discover the changes she needs to adopt? Als does not mean to roll over but it does demand, work and daily physical changes.

yea a couple beers over the weekend in the culdesac and used my power chair til it went in the red zone coming home from the city's fireworks.

ps. in gravel my jazzy works better going backwards...cant see but people run from me

 

[Guest]

Don't know if you've noticed Barb but most of my posts are in the early hours. I can relate to Gail. When they tell you that most patients die in their sleep it makes you a little paranoid (scared crapless) about going to sleep. Exhaustion and a mg or 2 of Ativan help bring on the sleep. AL.

 

[Guest]

Gail and Marcia--

Fatigue is also brought about by not being able to expel carbon dioxide from the lungs. That in turn can signal that the diaphragm muscles, which do the work of the lungs, may be weakening. It may be time to talk to a pulmonologist, have their FVC (forced vital capacity) measured, and see if they would benefit from a BiPap machine. I'm relaying this based on my Dad's experience.

Liz

 

[Guest]

Why is you sister working and why are you taking her on long outings?

Tracy,

She's cut back on her hours at work and is exploring all of the disability retirement packages that are available to her. Working gives her the sense that she is still in the game. She's the Director of the Department of Traffic Safety for the State of Minnesota...she's got close to 36 weeks of sick leave that she needs to drain before retirement is even an option...she cares about what she does and therefore has a hard time just saying "To heck with it...I'm quitting my job."

As for the outings...she always had the final word as to if she went or not and also was in control of the timing of the outings. I drove so that she wouldn't get even more tired.

Marcia

 

[Guest]

Liz,

Did you find your dad's energy returned (or diminished less) after getting the BiPap? Does a BiPap only get used at night or is it a "use as necessary" sort of thing?

P.S. to Tracy & Barb...we're going up to our cabin this weekend (in Ely, MN...close to Canada, eh?)...hoping to have a few out on our deck or on the dock!

 

[Guest]

Marcia--

Sorry to say that his energy never returned. He started out just napping with it, and feeling more alert or awake for a few hours after waking up. Within about two months, he was sleeping all night with it and then using it as necessary during the day, including naps. After about eight months, he was using it 24/7.

Have a wonderful time at your cabin this weekend!

Liz

 

[Guest]

Marcia

Marcia, thank for the update. Being hard core here being a Director is an impressive title but in the big picture the Job was there before her and will be there after her.. bummer ALS is but she has a new life now., She can fill it with work or managing her health, being with family, volunteering time to community, AS HER ENERGY dictates.

Burning her energy to the break point willl result in falls,. The contact at work will result in colds/flu. The drugs will hamper her judgement. This is managable by joining others, such as here or ALS groups in her area.

I come across cold but I do care and have seen/been with others that are doing what she is attempting, with not good outcomes.

today i'm now doing block watch on my chair and overseeing roof replacements in my neighborhood.....yea a big change from IT department work.......oh...no one bothers to contact me from my prior jobs. Church and neighboors are great!

Marcia you do have a heavy job ahead of you..i'll be praying for you.

 

[Guest]

Hard to let go of her job? Me too.

I know the feeling, I am, was a work-a-holic. My job was my life for years, and then I realized my family was more important to me than my job. When I became disabled 18 years ago it took me years to get over going to work. I would dream about it every night. I kept trying to do things that I knew would cause me pain the next day, until I found myself falling about 5 to 10 times a week due to the nerve damage and muscle loss in my legs. Finally my doctor told me to stay in my wheelchair before I broke something really bad. I've come close many many times, but thank God never broke anything although I sprained a lot of things.

What not to do:
I loved to fish and have my own boat so I decided to go out by myself about 24 miles offshore for some relaxing fishing. I used my canes to launch my boat and tied a rope to it so it would not float off when I launched it off the trailer. The rope got stuck in the tailgate of the truck and cut it, so now the boat if floating loose at the dock. I tried to hurry(Yeah Right) to the dock to catch the run away boat, tried to move but my legs said don't think so, at least not that fast, fell on the pier, finally caught up with my boat at the end of the pier as it was about to float out to sea.

Moved the truck and boat trailer to parking where since my leg muscles had decided to go on break, it took twenty minutes to walk back to the boat and leave the dock. Well so far ok. Got offshore over 24 miles no other boats in sight, started fishing. Caught a small fish and went to throw it overboard while standing between my center console on the boat and the side of the boat. About this time my legs fell out from under me and I found myself sitting with my back on the center console and my knees in my chest with my legs jammed against the side of the boat, with multiple muscle spasms.

What a dumb mess I had gotten myself in. I could not move, could not reach the radio to call for help, STUCK.....After 20 minutes I was finally able to squirm my way loose and crawl back to my boat seat, and this was BEFORE I was DX with ALS.

I had enough, headed for home, then got to the boat ramp and tried to figure out how one person was going to load a boat. Put the trailer in the water, drove the boat up on the trailer and then the only way to finish winching the boat up was to climb over the bow of the boat and step down on the trailer to work the winch.

Another mistake, my legs gave way and I found myself hanging from the front of the boat by the boat rails, that is until I fell.
Several people at the ramp watched the comedy of errors but none came to my aid. Finally got the boat on the trailer and home, and there it has sat for some time now.

Some people are smart they know their limitations and stick to them , others have to push to the limit before they get the message.

I always did have to learn the hard way my wife says. It's funny now, but at the time NOT so funny...

Please learn from my mistakes and if you are weak, get in the wheelchair before you fall and break a hip or something. Do things in moderation, take your time, and let others help you. Don't be ashamed that you can't walk all over home depot or Wal Mart, use one of their wheelchairs. if you need it.

Just my 2 cents, hope it helps some. God Bless and have as good a day as possible.
AL

 

[Guest]

Good story MtPockets.

LB has lots of fatigue also. On a recent trip to the pulmonary doctor the doctor ask, "well, how's your breathing." LB replied, "fine, just makes me tired." Both the doc and I got a smile from that honest reply. I'm just glad he does it anyway!

 

[Guest]

Hey Al good story. You should have posted it under my tips for lawn mowing. Funny how we do silly things just because of pride. We were in Home Depot about a week ago and my wife said why don't you get the scooter. Being the type of guy I am I said I don't need it yet. By the time we were done I thought I wasn't going to make it back to the parking lot. Maybe next time I'll take your advice and be smarter. Take care. AL

 

[Guest]

Older I get more I act like a child

Yeah Al that would have fit right in with the lawn mower story. When I look back on these (little mistakes) makes me wonder am I getting smarter as I age or regressing to childhood when I would not listen to anyone's advice?
Some of us hard heads have to learn the hard way instead of learning from other people's mistakes. Then again with a last name like MARBLE what could I expect. haha
:-D

P. S. Speaking of the lawnmower, looks like my grass over here on the left needs cuttting, HUM.....