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upila

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Hello everyone!
Horrific cramps and weakened left hand thumb muscles was the reason for a doctor's check-up and a subsequesnt ALS diag. Since then, Jan. 2005, my dad has been taking a relatively high doze combination antioxidants. For 2 months now he no longer has cramps. Fasciculations are a constant, however. Please, can anyone tell me if eliminating the cramps is a positive sign? The doctors he has used are not a source he wants to go abck to with questions. I have been reading all posts on all forums to try and look for information and trust your input completely. My sincere thanks!
 

Al

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As far as eliminating the cramps without the use of drugs that is a good sign. I take 300mg of Quinine to relieve the cramping. My fasciculations are still going on a mile a minute every where there is still muscle mass. I'm told when there is no muscle left the fasciculations will stop. Which is not a good sign. What type of antioxidents does your dad take?
 

upila

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Thank you for replying Al,
He is taking 1000mg Q10, 800mgE, 2.5g creatine, 100mg grapeseed, acetyl-Lcarnetine, Alpha-lip-acid, pychnogenol, DHEA and 3-4,000 Flax Seed/Fish oil. Since the inital diagn. the only visible signs remain the loss of coordinat. between the thumbs/index along with muscle waste in that area only. If he "over-uses" his hands, the strength in the hand/fingers just shuts off, then it comes back after time, the length of time depending on how much he used them. From the left hand the same thing has happened to the right hand, not as much yet, and it appears to stay at that one level. While there are fascic on the calf and thigh of the left leg (there the cramps were the most vicious back in Oct/Nov 04), and less on the right leg, he has no problem at all with his legs. We now realize, that the fascic and cramps had started back in the fall of 2003, but he has always attributed anything like this to heavy workouts and his work (masonry). We are doing everything on our own, that is why I rely so much on the exchange of information. We all have to learn from each other's trials and errors since there is no help form the medical establishement. Dad feels much better than the time he went to the doctor's. We do not know which one of the supplements may be helping, so he takes all in a daily routine, along with good fruits, veg, no red meat, addl protein shakes diet. He has good appetite, no loss of weight at all; he works out (low impact bow-flex) and thread-mill walking. No range of motion is affected at this time. I keep a daily record of everything he takes and of how he feels. After the inital devastating and very morbid 2 months following the diagn, our entire family felt we were given a death sentence-feeling everyone on this site knows only too well. Dad considered the worst and opted to proceed as if this will be overcome; there is no other choice. I have read everything I could find for months now and know what you mean about the fascic. What I was wondering is, if eliminating the cause of the cramps, in some way may have eliminated (I know, I may be just hoping) or at least slowed down the reason for the inital nerve destruction in the muscles. The cramps were at their height during and right after a very heavy work season, with a lot of aggravation. Now, he is not working anylonger, he is much calmer, focused on staying calm (huge change in behaviour) and this seems to have had an impact. Does it sound reasonable to you? Or am I being naive?
 

Al

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No I don't think that sounds unreasonable. I find my cramps will come back if I over exercise my muscles as well. I can't stand still for more than a couple of minutes because my calf muscles start to cramp. Not working as hard will be of benefit. This is one of the times the old adage about hard work never killed anyone possibly being wrong. If we use our muscles to the max and hurt them there is no repair to them. Muscle cramps as well as hurting like a son of a gun can damage the muscles. Whatever works and his regimen seems to for him I'd probably keep doing it. Take care.
 

upila

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Thanks again, Al. It seems to me, that perhaps it is of huge importance to start doing something as early as possible. I am so grateful for all the information posted on the forums. It is so tragic that for illneses such as this and many others, which are deemed "non-profitable" by the drug industry, true drive to find a resolve is virtually non-existant, I do not care what some say. It always comes down to money and profits, and so very seldom to truly striving to help people. This morning, one of the headliners in NY TIMES read: "New diabeties drugs! Big bucks!..." What a shame.
 

me

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Welcome Upila. I hope you stick around and stay part of our group. You can learn so much and get encouragement at the same time. Melissa
 

upila

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Hello Melissa, thank you and yes, I will keep everyone posted on what is hapenning with us. In reading some of the summaries on ALS studies, muscles in themselves have been implicated as another possible starting point. Which is why I am following my dad's response to the supllements so closely. In his particular case, super strenious muscle performance and exhaustion at least to me appears to be the likely trigger, especially if the structure of his muscles was predisposed to internal toxic damage. The moment he stopped working and started the "cocktail" he has had such marked improvement to where there are no cramps, he can hyperextend/stretch as much as he wants without any spasms, legs feel light. I don't know, we feel the next several months will be crucial in showing if all this is real or just temporary relief.
 

Carol Deboer

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Hi Uplia,

Sorry to hear about your Dad. Hope he keeps a positive outlook and attitude. It really helps for all involved. I know. Henry suffered from horrible cramps in his legs and arms too. He took 800 ui of Vit. E each day and that really helped the cramping. The muscle twitching was a constant up until the end. I really did not think that it would last for 8 years, but it did. It really is a hard pill to swallow, but, you will get through it. Remember, what works for him is what really matters. We tried everything in the world to prolong Henrys life, and I think for the most part, that most of the alternative things he did really worked. However, they did not last forever, but, he would move on to something new to combat the diesease. Eating right, mild range of movement will keep him mobile for a good long time. A nice glass of wine every now and then also helps ! Just ask Al, ha. He is really preserved ! Good luck to you and your family, and if you need anything at all, please feel free to ask anyone of us. Some of us have lived through it, and have the experiences to share. You are not alone my dear, so remember we are all here for you, and for your Dad.

Love, Carol
 

upila

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Thank you Carol,
It has been very difficult to watch dad do things he should not be doing, or at least I think he should not. Because he is still so strong, he lifts heavy objects rather than let us women do it, and I have been begging him not to. I have explained in a mild manner that if he overuses his muscles the nerves will get damaged much quicker, leading to quicker weakness overall, but he refuses to stop. Otherwise, he says, he is useless. Because he feels his strength, he thinks it's ok. But I know this leads to premature damage. AM I CORRECT? I am the only one reading and working on the internet, and prefer it that way, so he does not get into the depts of the horror of this illness, but find I have to inch by inch bring all of this out before he hurts himself any further. It does not matter he can do the lifting, it must be bad for him?
 

TBear

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Hi Upila:
I've been reading your correspondence on this thread. I don't recall anything adverse coming from doing strenuous exercise vis a vis ALS. Your dad will eventually find that he won't be able to do the things that he once did. I don't think it will damage his nerves. ALS damages the neurons that send messages between the brain and the nerves and leaves the nerves intact. As the neves cease to transmit energy, the muscles stop working and atrophy.

One of the most devastating aspects of this affliction is the emotional costs due to the loss of independence that comes from not being able to do tasks that one has always been able to do. My view on this is that he should do what is safe while he can. If it makes him feel good and useful to do the kind of labour that he is still capable of doing then he will benefit from that. Wehn the time comes that he recognizes the changes it may help him accept what is happening to him without you having to gently persuade him.

Good Luck

T.
 

upila

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Hi TBear, I have read many (as far back as the threads go) of your posts and have come to appreciate your opinion greatly. I am rather stressed right now, because today dad is not feeling well, and I know it is directly related to his overtiring himself in the last few days. He had several long car trips, been lifting materials, the weather had been around 90 degrees, and when he starts working, he forgets to drink water. Also, all of a sudden, he has lost his sence of taste - and the only thing I could think about doing diferrent is adding 200mg of Q10 to his already high 800mg regular doze. I asked him to go back to the 800mg, and hopefully the reaction will reverse. Have you any thoughts on this? I am now going to check the internet for any information on loss of taste. At home emotions are wild.
 

upila

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TBear, to follow up on the muscle question. I went back to look for the article where researchers are looking into "...toxicity in mutant muscles" in connection with ALS. As I understand it, even though the nerves are trying to regenerate, once their endings reach the mutant muscles, they are killed. And since dad had so much used and abused his muscles, particularly hands and legs(standing on ladders with heavy materials being lifted, twisted and handled every which way) it is precisely these muscles that have been affected. This theory starts with the mucle, killing the nerve, backwords. It so much begs the question, if true, then, would only the affected muscle will subject the leading to it nerves to be degenarated?
link (hope it works, I am not good on the computer)
http://www.alsa.org/news/article.cfm?id=556
 

Carol Deboer

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Hi Uplia,

Our theroy has always been, if you don't use it, you will lose it. Henry swam at the YMCA everyday until 2 years ago. He had no use of his arms, so his legs did all of the work. He also rode the stationary bike to keep his legs strong. He also did deep knee bends as well. I think that the excerise kept him on his feet for as long as he was. If you overdue it, then you will find that it might be too taxing on him. My husband was a bricklayer builder, so his everyday work was also quite a workout. I beleive that you should strengthen what you have left. He will know what he is capable of doing before he gets too tired. Have a great day.

Love, Carol
 

upila

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Carol, thank you! You and TBear have helped with a hugely important question for us. I will trust dad's instinct to work out as he feels he should, and only sound the alarm when we see he is forgetting himself. Thanks again!
 

TBear

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Hi Upila:
I have read that your dad refuses to interact with the Dr.s that diagnosed his ALS. It's understandable to be upset by this diagnosis but encouraging that he wants to get on with the battle. Unfortunately, I also think that he's missing out on a valuable resource to help him in his fight. The broad range of therapists at the ALS CLinic provided help in our struggle over the entire course of my wife's sickness. Not sure what we would have done without their assistsance. Maybe as time goes on and he comes to accept what is happening to his body, he will be less concerned about shooting the messenger... and he can then accept the help from that very important resource.
That said, for the 25 years that I was married (okay and for a few years before that) my wife would often wake up in the middle of the night with severe leg cramps. I spent many sleepless hours massaging her calf muscles. Did anyone else experience this before diagnosis? I think that earlier on in these posts some body talked about going to massage therapists for help with cramps and fasciculations... (and I'm too lazy to go back and check). I wonder if a good deep muscle massage might help? Any thoughts?

CHeers
T
 
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