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annad

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Hi,
I am a 2nd year occupational therapy student and I was hoping to join this support group so that I can learn from real-life perspectives of people affected (in one way or another) by ALS. I have a strong interest in pursuing a career in neuromuscular rehab when I graduate (May 2006. I have experience working with people with traumatic brain injury, multiple sclerosis, muscular dystrophy, cerebral palsy, and several developmental disorders. Almost two years ago, a close family friend was diagnosed with ALS and I became interested in learning how OTs can help people with this disease. I am open to questions and am very willing to learn from everyone's experiences. Thank you for letting me join!

Anna
 
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joelc

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You have a ton of reading you need to do here. There are many different topics and posts on this forum that will provide the learning you seem to be asking for.

By the time you are finished reading your questions will all be answered and you will have an intimate look into the lives and needs of PALS.

Please treat it with respect and not a school project, there are real, sensitive and hurting people here.

Welcome.
Joel
 

paula B

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welcome Anna

I agree with Joel,,,,,,,,,nicely put Joel
 

otstudent

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fellow student

Hi, I am also an occupational therapy student and I am very impressed with your determination to obtain first person perspectives. A book or a teacher does not truly grasp the concepts all the time.
Respect for people is a quality that therapists should have going into this profession and participating in this forum I think will only enrich that.
Welcome
Jennifer
 

MtPockets

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Muscle strength like a battery?

Hi Anna and Jennifer,
I have read on the forum before that one neurologist said with ALS the muscle strength is like a battery. It only has so much of a charge in it and the more you use it the weaker the charge gets? Do you think this is true?

It has been my experience that in the mornings I have some strength, but if I do something I get weaker as the day goes on, so exercise actually hurts my ability to do things.

I have lost a lot of muscle mass and my cpk count goes very high due to constant spasms. I have to be put into the hospital every few months and have massive IV fluids to clear out the kidneys. I get to the point that they produce no urine if I do not go through this procedure.

In your experience and studies have you heard of this?
Thanks for any feedback and welcome to the forum.

God Bless
Big AL
 

annad

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Thank you everyone for all the welcomes!

Big AL,
I have not actually heard of that battery metaphor, but from my understanding of the progressive muscular loss associated with ALS it seems to make sense. However, the wording chosen by the neuologist seems to imply that it is better to limit participation in activities, which in a way contradicts the main principles behind OT. As OTs working with degenerative diseases, we are taught to use compensatory techniques and adaptations to the environment (as I am sure you are aware) in order to keep people engaged in activities that are most meaningful to them. At the same time, it is important to use a "maintain" approach, such as a home exercise program, that will prevent premature decline in functioning. One of my teachers runs an ALS clinic here in Kansas City and she strongly believes in using exercises that can be tailored to each individual at their particular stage of the disease. Regarding your comment about becoming weaker as the day goes on, I was wondering what types of methods do you use to conserve energy? If you don't mind, I would like to ask my teacher for a little more information on this whole exercise idea. Let me know. And I hope this helps some, at least to give you an OTish perspective. :-D Thanks for sharing your ideas and experiences!

Jennifer,
You are right about having respect for all people, especially relevant to the therapeutic relationship between therapist and the individual! How far along in school are you? Do you have any clinical/fieldwork/personal experience with ALS?


Anna
 

MtPockets

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To exercise or not to exercise?

Thanks Anna for the feedback.
My case is unusual because I received nerve damage in an airplane accident 19 years ago that caused nerve damage to the L4, L5, S1 area, as a result I have gone from walking with a cane, to a wheelchair most of the time even before I got the diagnosed of ALS May 11, 2006. I believe I had symptoms for 2 years before the diagnosed. Anyway I lost muscle mass in left leg due to lack of use over the years. My right leg has always been my good leg. During the 19 years I stayed as active as possible, exercised as much as possible. Then the muscle spasms started 2 years ago, first in feet, then calves, then thigh, now all the way up to my rib cage.

Since I have had these spasms my right calf has lost more tissue than the left, the left is now 15 inches, and the right 12 inches. I cannot lift my foot off the ground now with either leg, but if I am helped to stand up I can walk for short distance sort of like Frankenstein. If I limit myself to walks to the bathroom I can make it thru the day with maybe 4 hours of using the wheelchair, but if I try to walk to the mailbox and back I am in the wheelchair for the rest of the day. That's why I used the battery analogy. The next day I have some strength return, but it is always getting weaker each day as the muscles atrophy or I lose muscle mass.

If I try to exercise, I'm in the wheelchair all week. I went to therapy for over 4 months, but had to quit as I was steady losing strength and muscle mass. Maybe my case is different than most others, but I cannot exercise for fear of losing all muscle use quicker.

I also have not heard many people talking on the forum about having high cpk levels from the muscle tissue going into solution due to the spasms, I don't know if this is because of my previous injury plus the ALS, or if maybe no one is monitoring this. I know at one point my cpk was over 5000 and I was in the hospital for 4 days running IV fluids wide open to clean out my kidneys and bring it down to 300 before they would let me go home.

My doctor explained the rise in cpk to me like this; your muscles are rubbing against themselves as they spasm, and go into solution in your bloodstream, where they end up trapped in your kidneys, clogging the pores of the kidneys. I know when my cpk levels are getting high because the output volume of urine goes down dramatically.

If you have no idea what cpk is, here is a definition:
CPK is a blood test that measures creatine phosphokinase (CPK), an enzyme found predominantly in the heart, brain, and skeletal muscle. When the total CPK level is substantially elevated, it usually indicates injury or stress to one or more of these areas.

I hope this helps give you a better idea of what's going on with me.

God Bless
Big AL
 

Al

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Funny you should mention the CK levels Big AL. A couple of weeks ago I got a routine blood test and at dinner (8 in the evening) got a call from the hospital that my CK level was 1008 and they were worried that I had a heart attack. I had a quad by-pass in 99. They were unable to contact the Neuro that ordered the blood work so off to the hospital I went and got wired up for ECG and heart monitor and more blood tests. CK was up to 1184 by then. Tests came back negative for heart attack and I went home. Talked to GP next day and he said that my previous test was 400. Talked to Neuro and 1200 is not out of the ordinary for ALS patient. At 2000 he starts looking at a muscle biopsy to see what is going on. The Doc's in emerg didn't know much about ALS and it's a good thing I know some about it. I was telling them about taking Cytoxan for Multi Focal Motor Neuropathy and Progressive Muscular Atrophy and she said wow big words. She had no clue about the two diseases. I've learned that unless you go to a center that knows about your disorder you had better know what is going on yourself. AL.
 

BWk

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cpk and strength question

Big Al,
Did you notice that your urine was darker or did you have any other symptoms when your cp levels were high? My doctors never mentioned to me to have this test done? I haven't lost any strength since Feb. is this a little unusual for als persons? My muscles hang down like someone whom is 85, but I still get around fine. My wieght [down 25 lbs from a year ago] has stayed at 160 since Feb. 2006. I used to have a sailboat, I loved sailing, had you ever tried it? Something about being on the water I've always liked, the sound of the water lapping against the side of the boat, the breeze in your face. Barry
 

MtPockets

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cpk and dark urine

Boy what a topic? Sorry about that, but yes the urine does seem to get darker the higher my cpk count goes, and then the volume decreases if it gets too high.

I've also been told that the baseline measurement for each person's cpk can be different. While 1000 may be high for one 3000 may be high for another. Just something else to confuse the issue. Most people I understand are around the 400-500 level with a normal cpk. Any Doc's or nurses want to add to this discussion? Please?

AL you make a good point, most Doc's use the cpk as a heart attack detector, with us ALS patients it may be just an indicator of muscle spasms with the muscle tissue going into solution in our blood. Never hurts to have an ekg though to be sure.

Another thing I've been wondering about, the heart is a muscle, right? Does ALS eventually effect that muscle also?

God Bless
Big Captain AL
 

paula B

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Well captain Al,
From what i was told als attacks the muscles we can control. Such as,,you can hold your breathe so therefore your lungs will be attacked. So i would have to say know to it affecting the heart as we can not control when it beats.
I have no proof of this,,its just what i was told.

Paulab
 

Al

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The heart luckily enough is an involuntary muscle and therefore is not affected by ALS and muscle wasting. When I got the blood tests the form said that for someone my age and in good health "normal" CK was 20 to 200. Oh and before someone asks, no it doesn't affect that muscle either. AL.
 

MtPockets

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Good that the Heart is not affected

Glad to hear that the heart is not affected, but you got me wonderring about that "other" muscle, hahahha. Slipped that one past us didn't you? oops. Forget I said that. :twisted::oops: Keyboard is possessed this morning. Lord have mercy.:)

Good to hear the normal is suppose to be 20 to 200, but bad for me since I haven't been to 200 for over 3 years.

Think since I have a boat and everyone gets me and you confused I'll just go by Capt. AL, unless we've got another one of those on here too?

God Bless
Capt. AL
IE: mtpockets
Big AL
The Boss
Hey you
Whatever you want to call me, just call me:-D
 

Al

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I read your other post before this one and mentioned about all the name changes. Funny you should ask though. I used to be known by some as Big AL the Fire Guy. I was a Captain on the Fire Dept hence the little fire guy avatar, before that one I had a fire truck with pALs on it and as long as you don't call me late for dinner we're OK. So I'll just be AL or GramPAL and you can be who you are. Fair enough?
 

BWk

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Capt. Al,
Thanks for the info, guess I'll get my cpk level checked just to see where I stand. If you thought that topic was bad go to the [Pals] heading where they are discussing bowel problems[yuk].Barrry
 
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