Hello ALS Family,

I hope everyone is doing well on this Monday morning.... NY is hot and humid as if we skipped spring and went staight into summer....

I have something I would like to get some feedback on if at all possible:

Dad goes to bed normally around 11:30- 1:00am he has always been one to need a max of 5 hours of sleep. So let's give this weekend as an example. Dad has tons of work and not enough workers and I know it is stressing him... He gets up every morning including sat. and sun this week... He drives 45 min to work, then he gets out his walker and walks up and down little hills within the building, goes through heavy doors, helps the men clean the brushes, mix the paint, and little jobs of this nature. He will then go do some shopping cause he loves to shop.... When dad gets home at around 5pm he is tired he just wants to sit and watch TV. He says to me you know when I do all this work my legs are tired and I feel a bit unsteady like my balence is off. He says I am great all day long but at night I am tired and I need more then the cane cause in the house he will use the cane or walk along the walls.... Is something to be concernd about like things are getting worse or is just from a long day of being on his feet and doing so much?

We also notice at nigt or really by like 4pm his voice is slurred and very slow... Come morning he is walking fast and speaking good again.... Is this all fatigue or progression?

I thank you so much for youre responses....

I also had a question about jerks... Dad gets these jerks which he has had in his right leg for about 5 years... This is the only place.... However, occasionally he will get them in his right arm... You know it is really not a jerk his reflexes are so strong that it is like a spring reaction.... he will reach or something or throw something, or even scratch and when he does it is like it spring back... What is this about?


Thank you in advance for your response..

Jen

I have a couple of thoughts on this from my own experience.

1. Stress is a killer, he needs to get rid of as much of it as possible ASAP. It will escalate his rate of decline.

2. Working like he is also causes a premature decline. When I over do something I find myself at a lower level the next day - I don't completely bounce back.

Having said this.......I cannot quit doing everything either and your dad might not be too cooperative when it comes to giving up his work and staying at home. I cannot sit still but know I am doing myself damage by insisting on doing things. I can't sit back and do nothing.......that will come soon enough. With God's help I will deal with that when it happens.

Not sure about the jerks.

God bless!

Jen,

The same thing happens to my husband, but he won't listen to me when I tell him he needs to pace himself! I agree with Joel, your Dad will probably not want to give up work. My husband is bored out of his mind since he quit work and finds lots of stuff to do that he really shouldn't be doing.

Today he has driven my son to Tybee Island in South Georgia to vacation with his cousin. Then he is turning around and coming straight back. That's an 8 hour round trip drive! When he gets home he will sit in his recliner and stay there until he goes to bed. Tomorrow he will barely be able to move. His speech is also slurred, once he becomes exhausted.

My husband also feels like Joel:I can't sit back and do nothing.......that will come soon enough.

CJ

Hey Jen,
Your Dad is losing balance at night because he's working his butt off during the day. From experience, I use to keep working out with weights and swimming after being diagnosed as well as going into work for 12 hours because, like your Dad, that's what I had always done! Then I would come home and be like a big bag of jello...that was my ego thinking that I can still be me and that things won't change.

The reality of the situation is that with ALS, we can't do what used to do, and we have to allow alot more down time. If your Dad is like me, he's not going to like it, but he has got slow down. If his balance is off at the end of the day then he's physically exhausted. Maybe, as a compromise, if he wants to keep working, talk him into going to bed at 930 or 10. Ask him what's more important, work or some quality of life? Hopefully it won't lead to an argument.

Thank you all for your responses.

Dad will not stop working this is 100%. I do agree that he will have to allow for some down time. The thing is that he does... He gets home at like 5pm does a few things and that at like 6pm or 7pm at the latest he will sit in the couch eat, watch tv, and read the paper. He will then nod out on the couch on and off for a couple of hours and turn to bed at around 11:00pm. Some nights he does this and is asleep by 11:30 and awakes at 3am to go to the bathroom and then back to sleep and awkens for the day at like 5:30 or 6:30 am.... The day starts again good and then night comes and we have, heavy legs, slow speech and slurred a little sometimes alot other times, and very brisk reflexes in his arms and hands.

Dad can't always fall asleep very easily... He just does not get tired why I have no clue...

Like last night he went to bed finally at 1am slept until 6am and he is doing great now but tonight he may be great and then come wednesday or thursday he will be back to sluggish again...

I am just wondering and it seems from the posts that I have received this is fatigue and not necissalry progression. Is this correct?

Jen

Jen -

Yes it is fatigue. BUT - he is being fatigued because he is losing his stamina! This will become a vicious cycle, until bit by bit little stamina remains. There is no gauge to use to measure at what speed this can happen, it varies from person to person.

Hopefully your father is doing what he enjoys in his work, so if he's happy that is very important!

Maybe if he would avail himself to a sleeping pill, it would help him get restorative sleep and this would help his stamina to some extent.

Men can be stubborn:shock: (no offense guys) so you may just have to take a step back and go with the flow if he's happy.

CJ

Hi Jen,

you said "I am just wondering and it seems from the posts that I have received this is fatigue and not necissalry progression. Is this correct?"

From my experience, and everyone is different, you are correct - it is fatigue. As the week progresses, so do the symptoms. I have experienced the same and it can definitely be attributed to fatigue.

BUT, fatigue leads to progression! As we get tired our bodies cannot fight the disease as well so it becomes detrimental.

Remember.....I say this from my experience. I now wish I had taken things a bit easier, your dad might too at some point. Encourage him to slow down and only work half days.

Good luck!

Joel

Thanks again for the responses...

Stamina to me is the abilty to fight the fatigue and keep on shrugging... Correct? Are you saying at one point he won't or may not be able to do this? So another words his body will request rest to build up more stamina?

I don't know this whole disease sucks!

I am so overwhlmed and obsessed with how he is doing the past few months. For awhile he was doing great... Now he seems to be in a flair up sort of speak... Perhaps this is going to happen every few years. With him he seems to go through something and then it levels off and he is good for awhile and then again something and then good again. This is what has been going on for the last 6 years or so.....

HE will not take another pill for sleep depression whatever it is. He refuses to take another pill...

Jen,

Yes you are correct, at one point he may not be able to continue along the same course he's taking now. Although as you have mentioned he could plateau.

Let's say you are a long distance runner - you know it will take endurance or "stamina" to complete the race. If you fire all cylinders at once and keep full throttle you'll be ahead for a while but not for long, because your energy stores will be spent before you complete the race. But, if you pace yourself and expend your energy wisely you may very well complete the race without losing all of your stamina. That is why the ALS specialists advise PALS to try not to stress their minds or their bodies in order to perserve their fortitude. Usually, (per the docs) the more you stress your body the faster the decline.

Like Joel indicated, pace is directly related to rate of decline.

Hope this helps.

CJ

Hi
Fatigue ,as everyone has said ,is part of the disease and so your dad will be tired in the evenings.However, doing too much doesn't cause the ALS to progress any faster,but as the disease progresses the fatigue will increase and the combination of that and the increasing muscle weakness,will necessitate slowing up. Because ALS is progressive, if your dad enjoys what he does now , why not keep going? It is like a pair of scales. At the moment the enjoyment of what he does is probably worth all the fatigue it produces. Once the fatigue outweighs the enjoyment , then he will probably cut back and do less. In the meantime , all you can really do is be there for him and support him as much as you can. To you it may seems crazy to wear himself out, but to him , it is probably important to keep going as long as he can.My motto is 'if I enjoy doing something and I can do it,then it is worth the fatigue'. His is probably similar!
Best wishes
Jean

Jean, I disagree with your assumption that fatigue doesn't cause ALS to progress any faster. In my experience it does. If we fatigue ourselves by working we take neccessary strength and energy out of our bodies that it needs to fight the ALS.

I understand this disease affects everyone differently and each person is unique, but from what the medical professionals have told me.....they support what I have said.

We need to preserve as much energy as we can to fight this disease.

Respectfully submitted.

Joel I agree. I have seen 5 Neuro's and everyone has told me to use it but not abuse it. If you tire the muscle it has no recuperation powers. You can only tire it so many times and it will fail. Is it better to go to work every day and tire yourself or spend time with your loved ones? A week at work or a trip to Disney that the kids will remember for the rest of their lives. We each need to make our own decisions. Me, I went skydiving and went to the Grand Canyon. Everyone else may have other ideas but that worked for me.
AL.

Getting a full night's sleep helps a lot! I used to push myself to the point of exhaustion because I could. My muscles would get to the point where I had no choice but to slow down because my body (especially my legs) spasmed and cramped up with a crash and then to work or play the next day took more effort.

I am now VERY choosy how I expend my energy. Al, you shared that with me from the beginning.

Because I don't have the choice to NOT work, we have made working from home for me accessible. I mix work with injoying life around our place. People drop by more since driving has become near impossible. Weigh options and then decide.

Personally, from also being a 15 year cancer survivor, I can share, "Destress (is that a word?) :mrgreen: as much as you can. "

I've ALWAYS wanted to sky dive. Tell us your story Al!:-D

Frizzel

Yes I agree with all sides of the responses...

Dad not working is not an option. I do believe that he is learning his limitations and that is getting to him.

He really has been pushing himself the last couple of weeks and has so much going on that he has been depriving himself of sleep. This is not good and for some reason he just is unalbe to get to sleep at an early hour.

Last night his legs were really cramping on him. He was unalbe to do some of the exercises he has been able to do in the past cause he was just way to tired. Finally last night he forced himself to go into his room and in his bed at 11:30pm. I believe he finally feel asleep at midnight after waking up, walking around, laying back down, he is like a little kid fighting his sleep. When I try to talk to him he says your making me nervous go away. I keep asking him if he is having trouble breathing or something like that. He got so pissed at me that I would not just leave him alone that he called my husband in to get me out of the room. He then yelled if that was the problem would I be able to fall asleep at 1am on a flat pillow and exercise on my back and stomach... Perhaps there is something personal going on that you would not understand. Not everything is the disease Jennifer Marie.....

So needless to say dad is not speaking to me today. I am sad because I don't like to fight with anyone let alone someone I love so much.

I am also releaved that it is not the disease and perhaps he is just lonely, afraid he is going to miss out on something, sexually frustrated... I don't know....

What can I do to help?

I must say that he seems much better today... Speaking better, happy, walking, and even running around working again... However, he is speaking to J and not me cause he is still annoyed with me...

Jen

Jen-

I'm just going to give my experience as a caregiver to my husband. Others may have varying opinions and experiences.

When we found out hubby had ALS we were totally devastated (anger, depression, more anger, depression, etc...). I read everything I could find and then some. I became a regular Florence Nightingale:rolleyes:

This did not sit well with my husband! And since he had to quit his job, things escalated. I was armed with all the reasons why he should or should not do this or that. Finally for my own sanity, I realized that I would have to step back and let him make his own decisions, in his own time, for I could not control him nor could I control the ALS.

Since I've done this, my life has been much happier and so has his. I still hold Florence Nightingale's lamp, but not up to his face! If he sees me on the computer he laughs and asks "Have you cured me yet?" Now if I see him having difficulty I wait until he indicates he needs help before I hover.

Anyway, sounds like your Dad needs his space at the moment. He is lucky to have such a caring daughter.

CJ

Hello CJ,

Thanks for the response and yes dad needs me to get off his back and mom and hubby and brother tell me this all the time. I just hate to see him like this cause he needs to sleep and there is no reason for it.....

For whatever reason he just does not get tired.... He is fighting his sleep like a child from time to time and then once he is done fighting it he sleeps so well....

I don't know I guess he is just going through something and this will pass and all will be good again...

Your husband is also very lucky to have such a strong dedicated wife...

Jen

Jen,

My oldest daughter wanted to wrap me up in a cocoon and strap me in my easy chair. Needless to say, this did not work and she eventually had to resign herself to the fact I would keep doing what I was doing. I could not give up my life and quit doing things I was used to. It was also a way to keep my mind active and not think about my ALS.

Did I know it was detrimental? YES, but that did not stop me? NO. Am I living to regret that decision? YES. Would I do anything differently? Probably not, but I now know I should have. Knowing and doing are two different things......men can be so pig headed! There - I have said it. Experientially I know it did me immense harm........but I owned my own business and it took time to sell it and get out of it. That is just the way things played out in my life.

Your dad loves you!! Be patient with him and keep loving him, he will come around.
Everyone deals with their ALS differently.......give him time.

He is soooooooo lucky to have a daughter like you!

God bless you all.

Its hard to quess, not having been with you guys when you had your little tiff but it does sound like Dad needed some space and was overtired to the point where he remained upset longer. Sometimes it is hard to keep the emotions in check when you're overtired. JMO. Glad you two worked it out so well! Cindy

Initially, when my husband was diagnosed, I started taking him for walks around the block, thinking to "build his stamina"... I was so un-informed at that point.. As we began physical therapy they explained it to me like this... The energy you have with ALS is like a battery, you can't re-charge the energy. Once it's gone, it's gone. It not like working out a muscle and hoping the muscle with strengthen. That ability is gone with a PALS. Because we have younger children, my husband opted to leave work and spend time with us. We took a cruise to Alaska, jet-setted across the country to see my oldest perform in an Opera and continue to take many day trips in our area, which is chalk-full of things to do. I agree with Al, that these things will have a life-long impact on our children and our relationship with each other... All of the PALS have to do what they ultimately feel will give them the best quality of life. It's just that they need to know, that if they work very very hard, on things that really don't have that much significance in the long run, they are expending what little battery life they have, on things that may not matter to them in the long run... Just food for thought...

Yes I do understand this and appreciate your feedback. The problem is that he has no choice but to work. It seems that for the past month or so it has really caught up with him. The stange thing is he is recharging he has to be cause the person he is at midnight is not the same person he is at 7am....

Example:

Midnight dad is not walking well at all... 7am - 7pm he is walking the same way he did a year ago or more... &pm - whenever it is he falls asleep he is walking very slow, very off balenced and holding onto everything for support.

7am - 7pm he is speaking slow the same he has for the past year or more. However, from 7pm - 11pm he is slower, a bit slurred, and nasel as if he is struggling to get the words out.... 11pm - whenever he falls asleep it is all the above plus horse.....

So one would think that his battery does charge and then it needs recharging over night...

Out problem is how do we help him with this. He is so cranky in the evening, he goes into his room to go to bed and can not and will not sleep.. He lays down and then 2min later you hear why me why I CAN"T SLEEP.... This happens at least three times a week. When I say we are going to have to schedule a sleep study, or get medication he turns to say I sleep fine I just have way to much on my mind and I can't get things done like I want to.

With this being said I begin to drill him are you breathing fine, do you feel like your not getting enough air, are your legs cramping, all sorts of things come out of my mouth and then I can see that I am causing him to be more stressful and he has sort of like a panic attack where he has to get up and do something and he is on the verge of crying and or yelling at me.... As a daughter that loves her dad so much I am between a rock and a bigger rock and I don't know what to do...

Could it be breathing? I mean if that was the case then he would not be able to fall asleep some nights normal, or any other night when he is ready correct? Also if you could see what he does on the sofa from 8:00 pm -11:00pm every night all crunched up snoring with his mouth open as according to mama he has been doing since he was 40 years old he must be fine cause I know I would not be able to breath in this curnched up position.... So what can this be??????

Bottom line he is fatigued and he is feeling the back lash cause he knows he is walking different at night, speaking different at night, sighing all night, and just cranky....

HELP please HELP!