Question from my wife

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CAHPAH

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Serena wanted me to ask if any PALS had problems with fatigue if you get away from your normal routine. She gets up every weekday at six to go to work and is in bed by nine. She seems to do OK with that but if she deviates at all it just wears her out. Last Friday there was a problem with the fire alarm at school and she had to stand outside with her class for an hour. That just wiped her out. She slept until two pm Sat. and one pm Sunday. This Friday night we went to a special dinner at my daughter's school and she slept until noon today and really had a rough day.

I know I could search this but she wanted me to ask. Maybe this will start her interacting with the forum. I think that would be a great thing. Thanks for your help.

Jim
 
Hi Jim,

My husband is tired everyday just from his normal routine. Friday he went to walmart with me after working a half day and after walking around for about 30 minutes he was so exhausted he talked about getting a scooter next time we went. Today, he tried one of his muscle relaxers and he is walking faster and easier and seems to have more energy.

Best to you and your wife,

Stephanie
 
Serena, my husbands routine is a bit different from yours, mainly he gets up to take meds at 6, then goes back to sleep. when we have appts, and he doesnt get back to sleep he is exhausted the rest of the day. Anything out of the norm(like your fire alarm) seems to stress him out a bit, and with stress comes fatigue. On Tues, we left the house at 8am for my doctor visit, which turned in to an all day affair, ending in me being admitted into the hospital at 6 pm. This is Saturday nite, and he still hasnt recovered. I was the one who had there appendix removed, but the stress from everything really wiped him out. HUGS Lori
 
Hi Jim,
My dad keeps a pretty regular routine, but if the slightest thing comes up, it stresses him out, and he has to take a nap. Yesterday for example, he was trying to pay his AX bill, and the AX website had a glitch in it and took you to a weird page. Now to him, that was enough to stress him out and put him to bed with his bi-pap. Traveling, even on a wonderful relaxing vacation causes stress and then it takes 2 weeks to recover from that. ANY kind of stress, ie., "change" seem to set them back. Hope this helps, give your wife a hug from me!
Hugs to you too! Kari
 
what your wife does is just amazing. ANYONE would get tired. I am tired so so easily and if I do not go back to bed during the day pay for it. Love to you and your amazing wife
 
Ken and Serena, agree with the above, STRESS whether it is positive or negative seems to increase PALS fatigue. The other thing that you may follow up on is her respiratory status. All PALS complain of incredible fatigue when it is time for BiPAP and then report that they have more energy when they begin using BiPap. We hope to meet your lovely Serena on the forum and THANK YOU for being such a loving and compassionate CALS to your wife!
 
Jim,

My husband suffers from extreme fatigue. He takes Ritalin to give him energy and sometimes that doesn't help. Doing even little things will make him tired, especially if it's something that involves a lot of moving around. And I've found that when he has to talk a lot, he exhausts himself, as he tries so hard to interact with people and have them understand him. That is his passion! It tires out his diaphragm muscles.

Your wife may not be ready for this, but my husband has welcomed the idea (now). Could you get a manual wheelchair for her? Just for situations where she may need to stand for a long time or walk a lot, instead she can sit and roll. :) It will help conserve some energy.
 
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Hi Jim, I can say that anything out of my routine will make me tired. My Dr expland to me that I wake up in the morning with a bowl of Charries.. I need to be real careful how I use them up.. If I am planning a trip to town then I need to take it real easy until I go. If I am going out in the evening then nothing during the day. I get tired now just making my bed and putting the dishes in the dish washer. The bipap really helps with fatique. I will put it on for an hour or so in the afternoon and then I can stay up with Rich in the evening. Fatique isn surely a big part of the whole ALS desiease... L
 
One hidden enemy for pals is sleep apnea. Even if her breathing is still 100%, she could still very well have sleep apnea. I recommend a sleep study. If her breathing is low, her neurologist can prescribe a bipap without a sleep study. My breathing was still good when I got mine. I was in the middle of having my breathing test when the Doc said (If I pass the test, he can't prescribe a bipap) I took this as a hint, and purposely failed the test. I had a sleep study done, and do have apnea, but I wanted a bipap instead of a cpap, because I knew that eventually, I would need a bipap. I didn't want to end up getting both machines. It makes a world of difference when I sleep with the bipap! Keep in mind...you can not tell if you have sleep apnea without a test. I really didn't think I had it, but I do!
 
Yes, fatigue seems to be a constant with me. Linda's bowl of cherries analogy is so true. My OT told me to figure out the different levels of difficulty and give them a star rating. (example: washing my hair 6 stars, making my bed 8 stars, and going to the store 10 stars- and having sex --- well, that takes a whole galaxy!) The stars equate to the amount of energy I use doing the task. Then when I wake in the morning think about what I WANT to do that day and the number of stars it will use. From there I can then figure what tasks I can forego so that I have energy enough to do the "WANT".

Now that my summer guest season has kicked in (I own a popular B&B) I find that I enjoy visiting with the guests at breakfast and have given up the cooking so that I have the energy to visit over the meal. After breakfast I lay down and sleep until noon and let my housekeeper tidy up. That way I can replenish my energy for the rest of the day.

Is your wife able to nap during recess instead of doing playground duty? That might help her thru the day.

Hope she decides to come on the forum - even if she doesn't want to "post" - reading the posts of those who are veterans of the disease is not only informative and helpful, but sure inspires one to adapt to the body's changes without giving up.

Diane
 
glen has extreme fatigue.he up at nine and has a nap around 11and another nap at 2 or 3 in the afternoon.goes to bed at 10 and 11 at night.he is decling more so latey. everything is more work for him.i accept what is going on but for glen,he is having a hard time now with his breathing going down and weeknes.i try to make him happy but it is getting harder each day.i pray for him and everyone on the form. this is not easy ot deal with. LOVE WANDAxoxoxo
 
Oh hang in there Wanda, this is so hard for you. Poor Glen. I hope he is able to make a decision soon so you will be able to prepare either way for what lies ahead. Hugs to you both hun, and please tell Glen how much we love and miss him!
Kari
 
Serena's schedule sounds amazing to me, Jim. I'm in bed as soon as possible after dinner--7 or 7:30, to read or just rest. It's an on-going loss of energy, and anything added to the schedule is paid for the next day or more. I often nap in my reclined power chair now if possible during the day. Just talking--either on the phone or in person--wipes me out.

Wanda, I'm with Kari about praying for you and Glen.
 
You know, I had a thread I started about a week ago about "what do you do for the fatigue" and some posted back about using the 5 hour energy drink. Have any of you tried it? I talked about it to my doctor along time ago because of my own fatigue with fibromyalgia, and he said "No". I looked it up and it is loaded with vitamins and no sugar....and they claim "No come down"....anyone?
Hugs, Kari
 
Hi Jim.

In addition to the stress from the fire drill and standing outside for a lengthy time, the weather may have contributed to her fatigue. From our personal experience we have found that being out in hot or cold weather always causes fatigue. Hope this is helpful.

Vicki

caregiver to husband diagnosed 11/1997
 
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