What does this mean?

[MarciaA]

Hello all!

It seems like it's been forever since I've made it to the forum! It's midquarter time here and conferences are tonight...many grades to be done!

I had the wonderful opportunity to spend a bunch of time with my sister Kathy over the weekend...but now I need some feedback.

So that you know a time frame here, she was diagnosed in February. Her left hand has REALLY atrophied. She has a hard time using it for much at all anymore. Her left foot drops. She says she feels like she has to concentrate on keeping her legs "together" because otherwise her knees feel sort of like opposing magnets and feel all loose and weird. She says they sort of go back and forth between feeling like stiff stilts and loose and drunk-like. She's also getting extremely tired. She's looking into putting in only 6 hours instead of 8 at work because she feels so wiped out and useless in the evening otherwise.

Now here's where I need some feedback. What do all these symptoms indicate? I know that everyone's different, but should I be thinking that this means that her "ride" through ALS is a fast one? She seems concerned (as am I) about her being so tired all the time. Is this "normal"?

Also, she's wondering how much she should push herself. Should she push herself harder in attempts to improve her stamina and strength...but then feel tired out? Or should she do less and conserve her strength...but then run the risk that 'if you don't use it you lose it'? Her support group said to "listen to her body"...my body says lay on teh couch and eat chips ..she's only sort of on speaking terms with her body...

Sorry this is so long...it would probably be longer, but my lunch time is over and my class is coming in the door. I look forward to hearing your thoughts on these things!

Marcia

 

[ladave]

Marcia-

I cannot answer regarding the legs, this is not something I've experienced (yet). However I also feel quite fatigued at times, and I am a pretty slow progressor (so far). I think this is pretty common with ALS/MND, so that alone should not indicate a fast case I wouldn't think. FWIW,YMMV.

 

[Al]

One of the things that became a problem with me was feeling fatigued and the Pulmonologist suggested a sleep study. I wasn't getting enough oxygen so was restless and just didn't sleep well. They recommended a Bipap and things are better since using it. It might be something you should bring up at your next Dr. visit.

 

[MarciaA]

Al,
I'm sorry for the stupid question, but what is a Bipap? I've always meant to ask, but never have.

Dave,
Define "quite fatigued" for me. What does this mean to you? I'll give you an example of what Kathy is experiencing...Thursday we all had dinner, so she left work early to take a nap before dinner. Friday was a "normal" work day for her. Saturday she had yoga in the morning and went to a friend's house to water color paint in the afternoon. Sunday she drove the hour down to my house and the whole time just looked wiped out. I actually drove her home because she didn't seem awake enough to drive safely.

I wish I knew what she should do...nap and/or put her feet up more or keep driving forth. Dave, I know you go dancing...I can't see her having enough energy for that. She pushes a cart at the store so that she's got something to lean on.

She (like so many of us) is feeling "crabby" (to put it lightly) that ALS is robbing her of her strength. She and I tend to over analyze things (as you may have noticed from my rambling e-mails)...we tend to turn everything into a huge series of "if-then" statements.

"If I lay on the couch and rest, then will I recharge my strength...or am I doing more harm because I'm not exercising what's left of my muscles?"

"If I exercise, then will I feel better because I've gained more muscle and strength...or will I sap all my energy and be a useless blob of tired goo?"

Any insights?

Marcia

 

[braveheart]

Symptoms

Hi Marcia,
From what my Specialists say, what I read and my body is telling me, DO Not push myself, the musles do not regenerate or benefit from my former exercise routines. My lifestlye had to change, I've taken many falls because of my dropfoot. Evening time tells me that I've overdone it, I pay for it the next day too. I am a homemaker and have limb onset, I am using a walker in the house to help me conserve, can't lift it for outdoor and into the car though, too heavy. My P.T. has been a great help figuring out what is best for my needs. I've been told to rest often through the day, it does help since I figured out just how much I should be on my feet or laying down, I get stiff from sitting too much and my legs get noodley in the evening when they are tired. I had to pay attention to what my body needed, it's a survival technique of sorts.
Your sisters progression is hers, mine is mine, I cannot nor can Dr.s predict the future or progression of a PALS . Hope you and your sis find peace in this unpeaceful illness. Sarah

 

[ekoozmin]

Hi Marcia--I am so sorry about your sister. You are wonderful to care about how she is doing and watching out for her, she is very lucky! Everyone's ALS is different in how it "progresses" and what abilities are lost first.

My understanding is that the fatigue is caused not so much by lack of oxygen but because of the buildup of carbon dioxide. When ALS attacks the diaphragm muscles, the muscles fail to help the lungs exhale fully. The Bi-Pap machine does this for you. Some people use it at night or for daytime naps; then there are people with advanced ALS who use it instead of a having a tracheostomy and ventilator.

As sad as it sounds, she needs to start practicing energy conservation now, not later. She should not exercise in order to feel less fatigued, but she could start Range of Motion exercises that a physical therapist could show her. This has been a big issue with my father, who was vigorous and athletic, and couldn't understand why he should not try to exercise!

None of us are doctors here, so please don't interpret this as medical advice, just advice from us PALS and CALS who are also going through what you and your sister are going through.

Does she go to an ALS clinic? Encourage her to go, and maybe go with her because it's so overwhelming that you need an extra set of ears to process and write down all the info, and some of it can sound so grim. It SOUNDS as if they're telling you to go home and die, but what they are really telling you is to prepare yourself for a gradual loss of various abilities and what you can do to still have some quality of life. I wish you well on your journey. Let us know how she and you are doing!

Liz

 

[Al]

Bipap stands for Bi-level positive air pressure. What it does for you is to push air into your lungs and then it relaxes to allow you to exhale. It is set to different pressures for different people. My pressures are 18/6/18. What this means is that on inhalation it pumps in 18 cm. This is a unit of water pressure. Don't ask me why they use that but they do. Then the machine cycles and you exhale but it keeps a pressure of 6 so that your lungs don't collapse. The last 18 is the number of breaths per minute. I had to stay in hospital (rehab) for a week for them to get my measurements right for me. I go back once a year to see if I need changes to my settings. Hope this explains it for you. It's kind of the simple way to explain it so I hope it's enough.

 

[MarciaA]

Liz,
Kathy does yoga now and tries to do as many of the poses as she still can although the standing ones are getting more difficult. She's also going to start some water exercises with a physical therapist. This should also help with range of motion, I'm guessing.

Al,
Thanks for helping understand what a Bipap is. One more question...is it just a mask or is it more "invasive" than that?

Thanks so much to all of you for your support with all this! I still find myself going between acceptance and denial...between thinking I have the strength to deal with this and sobbing because of what ALS is doing to my sister and her husband. Can I assume that this is normal? :?

Marcia

 

[ekoozmin]

Normal? Boy, is it ever an emotional rollercoaster ride! You sound very self-aware and that's good that you're able to recognize what this disease is doing to you emotionally, as well as to your sister and her husband. What you're going through is normal, but make sure you have your own support system to fall back on, too. We're here for you!

Liz

 

[Barbie4]

missed you

:-D Hi Marcia:

I am glad you are back. I have missed you. So, is all this stuff sinking in more now for you? I have days where there is just like an underlying sadness that I can't snap out of, and other days are better. I am trying hard to focus more on today and a little of tomorrow. Some days I wish I could not think of the word ALS, but that is impossible.
Gail is coping a bit better now. She is starting to control her panic attacks and is really trying to stay positive. She walks everyday with her dog and usually a friend. She really feels she needs that walk to help her through the day. If she sits too long or can't get the walk in, she really stiffens up. I haven't heard her talk about the noodle legs though. The ALS clinic told her it was okay for her to walk, but just don't overdue it. We too, are always worrying about progression. The not knowing really bothers her and all of us too..
I can't believe how many new members are on here that have just been diagnosed. Is it always like this I wonder. It seems like someone new every day.
Marcia, did you notice that we were now members and not new members? The wounds are still so fresh and new. It is hard to believe that 6 to 8 weeks have gone by already. I still cry alot too and almost anything can set me off. The hardest times for me are when I am in my car driving. Too much time to think I guess.

Well, time to go. You always ask great questions Marcia. I always learn something from your posts and the answers that follow them.
:-D
Barb

 

[Al]

Hi Marcia. I use a mask that covers my nose and mouth. It kind of looks like a fighter pilots mask but is clear plastic with a silicone seal. It is held in place by 4 straps with quick disconnects on them. Some people use nose pillows that are just 2 little plug like things that go in your nose and are held on by straps over the head and usually used with a chin strap to hold your mouth closed. That is connected with about a 3 foot tube to the machine. The machine I have is pretty quiet so it doesn't usually disturb your partner. You can usually lie on either side or on your back but on our stomach is out. Hope that is enough for Bipap 101. Take care and any other questions feel free to ask.

 

[ladave]

Interesting discussion. There appear to be two different theories on ALS and exercise. The traditional theory is represented here- don't overdo it, atrophied muscles don't regenerate, stick to range of motion. My neuro and PT are of a different opinion, at least in my case; I have been given a vigorous set of leg and trunk exercises, including lunges and leg lifts. In my case it may be because the muscles in those areas are still very strong. However, I think it is more than that because I have asked my PT this specific question and she tells me that recent studies favor more vigorous exercise both to slow atrophy and to strengthen adjoining muscles so that overall function and mobility is maintained.

Marcia- my fatigue is not the same as you describe. Generally I feel very tired in the morning and have a hard time getting started, but once I get going I'm pretty okay. I do not have lung function problems at this time so that may be part of it. My advice, fwiw, is to stop overanalyzing and just live the best you can day to day.

 

[hope]

From what I understand from our doctors the fatigue does not mean that the progression is fast. Fatigue is a big part of the als. My husband has been told by the als expert that his progression is slow and he has fatigue really bad. My husband was a big strong man who was on the go all the time. That has changed alot. We have learned that he should not push himself to the limit because this only causes his to feel unwell. We feel it is important to rest throughout the day and not to do to much. Our day would be my husband having a good breakfast, going for a walk, a short distance. He then will do some things around the home he enjoys. A rest period is important in the afternoon and then he may do a few other things throughout the day. The most important thing I have found though is for him not to push himself to hard. Hope this helps a bit.

 

[MarciaA]

Holy cow for mixed advice on exercise versus conserving strength!
Are doctors giving differenct advice based on each person's situation, on their own personal beliefs, on scientific research, or what? A friend of mine is a nurse and she asked the doctors she works with this same question. They told her that for the most part it doesn't matter if you push your self to exercise or not because it won't effect the overall strength/energy picture. They also told her that ALS sort of progresses in spurts. For the first few months after diagnosis the person might have a "progression spurt" followed by a lull...and then this process repeats. Does this sound familiar to any of you?

Marcia

 

[Mike27]

So that you know a time frame here, she was diagnosed in February. Her left hand has REALLY atrophied. She has a hard time using it for much at all anymore. Her left foot drops. She says she feels like she has to concentrate on keeping her legs "together" because otherwise her knees feel sort of like opposing magnets and feel all loose and weird. She says they sort of go back and forth between feeling like stiff stilts and loose and drunk-like. She's also getting extremely tired. She's looking into putting in only 6 hours instead of 8 at work because she feels so wiped out and useless in the evening otherwise.

Now here's where I need some feedback. What do all these symptoms indicate? I know that everyone's different, but should I be thinking that this means that her "ride" through ALS is a fast one? She seems concerned (as am I) about her being so tired all the time. Is this "normal"?

Also, she's wondering how much she should push herself. Should she push herself harder in attempts to improve her stamina and strength...but then feel tired out? Or should she do less and conserve her strength...but then run the risk that 'if you don't use it you lose it'? Her support group said to "listen to her body"...my body says lay on teh couch and eat chips ..she's only sort of on speaking terms with her body...

Marcia

Hi Marcia,
I too, started with an atrophied hand and the infamous foot drop. Quite frustrating when you trip all the time! She may want to look into AFO's (braces) to stop that. I got a pair from an orthotic shop, on prescription, and they work very well.

In terms on whether it is a fast track or not, it is very hard to say. I've been relatively stable for a few years now so as I said, who can say? I do know that stress plays a major factor on my fatigue and general well being. But telling someone with ALS not to be stressed is like telling someone to jump in a pool but not to get wet...ain't gonna happen! (Sorry about the writing, I know your a teacher!):-D

I would recommend that your sister look into meditation or other relaxation methods to start, look at her diet as some foods can cause stress (hard digestion, caffeine etc) and look into light exercise.

As you can see, there is a great deal of debate with the benefits of exercise. It used to drive me crazy because I could never get a straight answer from my Doctors on this. I did tai chi for a while which was wonderful! Also yoga or any range-of-motion exercise that keeps the blood flowing. Even isometrics can be a safe alternative to weight training.

The problem with pushing yourself or over exertion is that your sister's body can't recover like it used to. Normally, we workout, rest and we're good to go a short time later. Because her muscles are working overtime compensating for other muscles which have atrophied, the recovery period will be much longer. She will need to rest for a looonngg time.
I took my son to the Oiler's hockey game last night. (which they won by the way!) It was loud, smokey, crowded and very hot which was quite stressful on my body. I knew going in, that this would be the case so I made sure that for the next couple of days I could rest and recover. Your sister may have to start planning her activities like that.

I hope in my ramblings that you find some useful information.

Cheers, luck and hope!