Fatigue

[MarciaA]

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

[TRACY22]

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

[Barbie4]

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 :-|

[Barbie4]

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:

[TRACY22]

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 :-)

[Al]

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.

[ekoozmin]

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

[MarciaA]

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

[MarciaA]

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! :-)

[ekoozmin]

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

[TRACY22]

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.

[MtPockets]

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.:oops: :oops:

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. :oops: :oops:

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.:oops: :oops:
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...:oops: :oops:

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

[terri]

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!

[Al]

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

[MtPockets]

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.....

[Al]

There is an old pilot's proverb. Learn from the mistakes of others. You won't live long enough to make them all yourself. Good words to live by now I'd say..

[MarciaA]

Great story, Al!!

I'm not sure how long Kathy will continue to work. She, too, is (was) a workaholic. I figure it's not up to ME to tell her to quit...she's got to be the one to decide when the time is right.

Tracy,
We all need to be slapped upside the head with a dose of reality every so often...it sometimes feels cold at first, but then it starts to sink in. Thank you for that! Kathy's been diagnosed now for about 6 months. I haven't fully gotten out of the denial stage yet...I'm guessing that she's still having difficulty doing that as well. I guess it will take time and support to get a handle on where to go next.

Marcia

[Barbie4]

Hi Everyone:

I haven't been on lately, as now the kiddies are home from school and our camping season has begun. We just returned from a great week up near South River, Ont. on beautiful Eagle lake. We had a fun time, but I really missed talking to Gail everyday like I usually do. We did alot of swimming, canoeing and marshmallow roasting, but with all that fun, there was still that cloud of sadness over head. As much as I try to not think of ALS and what it is doing to my best friend, I can't. That is the new life with ALS.
Gail had a bad week, and a very bad fall this time:( . She really hurt herself and has decided to give in to the walker and cane now. I read your story MT Pockets and you are right. You too Tracy 22, about using the things you need to get around. I think Gail feels that she is fighting it when she doesn't give in to the cane etc.
I really wasn't expecting her to deteriorate this quickly. I am saddened and shocked at how difficult it is for her to walk now. I am veryscared too.

Our motto this summer is to have fun and make this a really fun summer for the kids too. As we all know, the next few years are going to be the most difficult years in these little kids lives. They still have no idea what is going on and it is heartbreaking knowing what is to com.

We are heading off Tuesday (without husbands) to Gail's cottage and we are going to have fun!!! No matter what!!! 3 women and 6 kids under the age of 11. I can't wait.!!! I have taken some extra weeks off from work this summer to spend with Gail and her family, and when September comes, will re look at my job then. I am fortunate that my company is so understanding and supportive.

Well, I just wanted to say hello to all of you. I hope you are all doing your best to have fun and stay as happy as you can. I will cheers to you all on Tuesday night up under the Muskoka stars with my glass of Australian Cabernet.!!!!!!!!!!!!


Happy summer everyone!!!!

Barbie :wink:

[Granny]

Hi Barbie,
Thanks for checking in. I am so happy that you can spend some time with Gail this summer. We have been reading posts about PALS who have had their friends desert them when the going gets tough. You are a wonderful friend.
I agree that we need to have all the fun we can have NOW! We are going to a cottage at my favorite beach for ten days starting next Sunday. Our grandchildren will be there also. What a blessing!
I hope for each one of us on this forum that we can experience some menory making moments this summer to help us carry on with our battle! It may not be something big, just a hug from a good friend or a grandchild, a special note or message or just quiet time with someone you love.
hugz and prayers,
Leah

[MtPockets]

I had to take my own advice yesterday and apologize to my sister for something that had been between us for a long time. It was hard to do because I felt it was her fault to begin with not mine, but I swallowed my pride and asked her to forgive me and she did. One more stumbling block out of the way that I don't have to carry on my shoulders and worry about that anymore.

It feels like a weight has been lifted when I take care of all these little things that I have been putting off for such a long time. We are all blessed in a way to have the time to make "things right" with others whatever that may mean to you.

Thank God for good friends that will stand by you through all this and support you. My wife has no one who will help her with my care. It is very tiring on her. I love to have company come over to visit but just have trouble leaving the house for anything. Every day my wife asks if I want to go to the store with her or go riding and all I want to do is stay hidden in my cave away from the world. She cannot understand that at all.

It hurts to ride in a car due to back injuries, then all the trouble of getting the wheelchair out and everyone staring at you like you have the plague or something.
Sorry not one of my better days I guess. Just venting a little and worried about the wife. She refuses to even get on the site to get help because she says then that would be accepting I have ALS. Another trip down river de nile.
Love you guys and gals and God bless.
:cry:

[Barbie4]

Hi there to both of you:( and everyone else too)

Just baking muffins and Gail's favourite cookies as I pack to get ready for tomorrow's trip.

Leah, You always have the right words to say and I really appreciate your kind words. You are so right about the small things that make a difference each day and mean so much. I hope you have a great time with your family this summer. I will be thinking of you.

Al, You are a good man to swallow your pride and apologize for something you don't believe you should have to . That is a huge thing to do. Good for you. !!!! Even though I do not have ALS, it still makes me re look at my relationships and do some thinking too.
You know, we are about 5 to 6 months into this and you have mentioned that you do not want to leave the house for many reasons now. It makes me wonder if Gail will be the same. She has always been such an active person. I am always wondering to myself, what should I be doing now and thinking of what I can do in the future to make her happy as she progresses.
Don't even think about the people who look at you in your wheelchair. Go out and have fun!!! Smile at them and they will smile at you back. Sorry to hear that your wife does not have much help. She really needs to find someone to help her too. We are just starting to have to help Gail with things, so I can only imagine the needs to come, but I will be there for her, through thick and thin. We are lucky that she has alot of support so far, and I hope it continues.

Anyhow, I better scoot and get the packing finished. Al, keep smiling, and laughing and give that wife of yours a big kiss. I am sure she deserves it. :) I will talk to you when I get back next week. :-D

Barbie :-D :-D

[MarciaA]

Good morning!

Barbie, it's hard for me, too to have "ALS-free" days. I can seem to find "ALS-free" moments...and I'll take what I can get. Have fun up at the cottage! It's great that your work is so supportive and understanding! I am almost dreading the start of school this fall...life gets SO hectic and it's much harder to get away. I'm going to have to budget my time very efficiently so that I can have the time to be with Kathy whenever possible!

Right now we are in the process of helping Kathy's husband remodel their main floor bathroom. They're putting in an accessible shower and making sure there are plenty of grab bars around. We're also doing fun things, too. Last Saturday we went to the Crosby, Stills, Nash, and Young concert in St. Paul. FABULOUS!!! They said that they had just gotten done with a tour in Canada...anyone go? This Friday we're going to the Body Worlds exhibit at the Science Museum. http://www.smm.org/bodyworlds/ In August, Kathy and her husband, Earl, are coming up to our cabin for a relaxing getaway. We also try to just go up there and have fun, calm times...watch a movie...sit and talk...sit in their garden and listen to the birds...any time together is so precious! There are times when the reality really hits hard, but I try to live in the moment and try not to project into what is to come.

Al, hang in there...and tell your lovely wife to do the same! I haven't noticed that my sister is self-conscious about her walker...but the chair may be different. I know it's probably easier said than done to just ignore the stares when you're out and about. The people who stare probably have so many questions going through their heads when they see you. Some may merely wonder what happened to you to require the chair. Others may wonder where you got the chair because they know someone who needs one and they want your advice. When Kathy and I were at the grocery store the other day, a woman with a cane came up to Kathy and asked about her walker. She had been looking for a walker for quite some time and asked Kathy's opinion about hers. Kathy even let her try the walker and gave her the name of the store where she got it. I thought it was a great moment when Kathy could feel like she helped someone else just because she was using her walker!

Anyway, I should run and get some other things done this morning. Smiles and hugs to all of you!! Take care!

Marcia

[TBear]

Yes Marcia... I went. They were great, but at their age it seems as if it takes awhile for them to get the pipes warmed up... almost as good as Woodstock!

Barb: get your friend to Muskoka! I took my wife to our place on Lake of Bays every weekend and never regretted one moment of it. She, of course didn't care for my method of getting her into the lake, but I figured dumping the wheelchair off the end of the dock was a whole lot better than getting the wheels wet!

Al... your story on the wharf sounds familiar and I don't have any physical disabilities (there are those who would argue the mental situation but I ignore them). But for the 800 or so miles between here and Mississippi, I'd be happy to take you out on your boat fishing! My brother-in-law is a C4 paraplegic... we used to go out on his boat in Lake Ontario all the time. The walleye fishing was incredible... we stayed out until the beer was gone!

Al P.: See you tonight! For those of you in the Toronto area, it's ALS night at the Jays game. The Yankees are in town. I've been looking forward to this game since I bought my tickets 6 weeks ago! Hoping to meet face to face with at least some of the names on the board!

T.

[Al]

At the risk of getting in trouble for thread hijacking I'll see ya there TBear. I'll be wearing an ALS shirt and a white ball cap. Bringing the chair so daughter or wife will be pushing. Sec 231 row 13. AL.

[joelc]

In Response to Marcia's question.

I have also found fatigue to be a big nuisance in my life. With the stress of what is happening due to ALS, and not always being able to take life easy, my energy level gets very low.

I have found that this affects my "Vitamin B" levels, when they drop I am more fatigued.

Have your "B Vitamin" levels checked and see if they are normal or low.

If low then the doctor may prescribe a "B12" shot, or some form of "B".

I take a weekly "B12" shot to help with this - and it does.

Take care,

Joel

[MtPockets]

Thanks for the offer TBear. If you were closer I might take you up on that fishing trip offer. It's bad to have a perfectly good cape horn fishing boat sitting in the driveway, and I can't use it.

Maybe one of my sons will get a day off soon so they can take me out and watch out for me, as long as they don't use me for sharkbait. Haha:)
AL
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[Al]

Hey Al. If you can hang in till maybe Feb. I'll try to get down and maybe we can get out. I try to go to Florida for a few weeks in Feb. so you never know. Miss. isn't that far from Tampa.

[MtPockets]

Sounds like a good idea Al. Just hope we are both still kicking when the time comes maybe we can go for a trip. We could just fill up the boat with gas and head due south toward Mexico. I know we would not make it, but bet the scenery would be nice. What a way to go....
AL
:)

[Al]

Well when you run out of gas you radio the Coast Guard and then you get a neat helicopter ride home. Now that's what I'd call fun.