Overstretching

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dianan

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Hello. My mom was walking with her walker (very slowly) and was even starting to get up on her own. She had been exercising daily, just getting up and sitting down, which gave her enough strength to finally get up on her own. This proves that exerciser does help, as long as it is not overdone.
Then her friend gave her a massage, then her friend stretched her legs, putting her knees to her chest which overstretched my mom's muscles. Since then, she has been unable to get up on her own at all, much less stand or even hardly move. She is now in a wheel chair every day, all day. It has been 2 weeks since this all happened. Is there something that can help her with this? She was doing so well. I've heard of soaking in a hot bath to help sooth the muscles.
 
Exercise isn't really advised for PALS. It uses up too much energy. I don't know if your mum pulled something when stretching. If not, then unfortunately this is how ALS progresses. My husband, even after being in a wheelchair for so long, sometimes could pull himself up from his chair holding on to the rail on the hospital bed. He had the chair very close behind him and me by his side. Sometimes he just couldn't do it. Try range of motion exercises to keep your mum as agile as possible. Save the energy for things she can still do without too much strain. I hope I don't sound too discouraging. Sorry you're going through this. Yasmin
 
This proves that exerciser does help, as long as it is not overdone.

Not really. It only proves that, on occasion, your mother had enough strength to do a very dangerous thing. One of the big causes of death for PALS is injuries suffered in falls. Sometimes, a PALS thinks that he/she can do more than he/she really can and take too many risks. Far too often, those risks result in injury or, sometimes, death.

Then her friend gave her a massage, then her friend stretched her legs, putting her knees to her chest which overstretched my mom's muscles. Since then, she has been unable to get up on her own at all, much less stand or even hardly move. She is now in a wheel chair every day, all day.

Probably the safest and smartest thing for her to do right now. Doubtful that your mother's friend's massage had anything to do with your mother's recent weakness.

It has been 2 weeks since this all happened. Is there something that can help her with this? She was doing so well. I've heard of soaking in a hot bath to help sooth the muscles.

If your mother was walking very slowly with a walker and having difficulty standing up on her own, it was time for the wheelchair, purely for safety's sake.

If your mother insists on attempting to walk, get her to agree that she won't do it without someone else nearby to "spot" her. If the caregivers need to get her into a standing position to do certain types of transfers (standing pivot transfers to toilet, chair, bed, etc.), there is a device called a "gait belt" that you can try, but expect that to be a temporary measure. Finally, it's probably time for all of you to learn about Hoyer lifts and the various slings you'll need for various purposes in your mother's care.

I know that this isn't what you wanted to hear, but it is something you needed to hear.
 
Sounds like it was just time for her to get the wheelchair. I don't believe her friend's massage for her did her any harm...as long as you don't see any visible problems...her legs aren't really red or swollen right?

....the friend probably feels bad enough actually that it was sequenced like it was...just time to move on and adapt to wheelchair. Your mom should actually find it a little more liberating and independent because she won't fatigue as easily and will be able to stay 'out' longer. Good luck to you and your mom.
 
It wasn't the massage that was wrong, it was the overstretching. She stretched her legs more than even I would stretch mine. I don't know where you guys are getting your information from, but I've never heard that exercising is bad, other than overdoing it and it being hard on the lungs. As long as my mom exercises, she can still move. As soon as she stops exercising, that is when she is unable to move. When my mom could walk on her own, if she sat for a long time, then when she got up, her legs were stiff and it took a lot to get them relaxed. When she did not sit for a long time, then her legs did not get stiff. I'm not saying you guys are wrong, I'm just saying it does not make sense to me, considering what I've seen.

I read somewhere that it is important for people with ALS to exercise in order to train their neurons and to build the muscle back. Just an example, not ALS-related, but my sister severed her nerves in her arm in an accident and was completely unable to move her hand. She had to have physical therapy and now is fully able to move her hand as though nothing had ever happened to her. I know it's a little different with ALS, but the same concept. I think if you constantly tell yourself that there is no cure and no hope for ALS and that there is nothing you can do but sit there and die, then you will die and the disease will progress really fast. In fact, studies have shown that ALS patients given a placebo have actually gotten better. There HAS been people cured of ALS, MS, diabetes, cancer, and other so-called terminal diseases. So never give up.
 
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Tonight (last night, actually, since it's past midnight now) I went to my mom and dad's house to meet with my sister and aunt (since she works in hospice) to discuss what possibilities we have for hospice. We were all set and had things planned on what would help. We were feeling pretty good about the plan. Then my dad came home drunk and asked what we were doing there. We told him we were there to help him. We told him what ideas we had and he blew up. We asked him what he wanted and he said, "I just want things to be the way they were." Then later he said that I should move in and he will move out and live alone, then he left and hasn't come back. I just got home.

Anyway, I asked my mom exactly what had happened with her legs being stretched because I wanted to know if that's all it was. She told me the whole story. Apparently that very night that her legs were stretched, they were very sore and she could hardly move them, so she was in a wheel chair for three days. By the third day, her legs had gotten better and she was able to move them like normal again. BUT because during those three days of being in the wheel chair, she didn't have to listen to my dad scream and yell and cuss at her and kick at her feet to get her to move faster, she decided to stay in the wheel chair. So now that she's been in the wheel chair and hasn't been using her legs, she feels them getting weaker. She was in tears as she was telling me this. This is why we are so adamant about getting my mom help and away from my dad. My dad needs help spiritually and mentally. The way he was talking today was just craziness and didn't make sense. He kept saying the family was manipulating and controlling. He just wants to do his own thing. Now my mom doesn't know what she wants to do. I've offered to have her live with me, but I have a little tiny house with four kids and a lot of stuff. My aunt offered for her to move in with her but she and her husband work full time. My mom doesn't want to leave the house because she knows if she does, my dad will destroy all her stuff, as he has said he would. I told her we could get all her stuff. She has a LOT of stuff. So I don't know what we're going to do. My sister is with her now, but will be leaving in a few days. She lives about 9 hours away.
 
Dianan,

Your most recent post indicates that your Mom is in an abusive situation and should be removed from your father's care. Please get help for her. You'll need to find out how and where to report it in the state where she lives.


I'm not sure where you've been getting your information on ALS and exercise. It is generally accepted by the ALS community that ROM and stretching are best for most PALS. Before undertaking any exercise program it should be cleared with the PALS' ALS specialist. The goal according to a handbook provided by the MDA/AlS Division "is to help maintain mobility, improve endurance and minimize pain from the effects of muscle wasting". We are warned to "never push ourselves past the point of fatigue, or attempt to strengthen already weakened muscles". I think that I can safely say that this is the message given to most PALS by their Neurologists who specialize in the care of ALS patients. Unlike your sister whose nerves were severed and who regained the use of her hand, PALS are UNABLE to rebuild muscle because of the mechanisms at work in the disease itself. It is definately NOT the same concept.
Of course we would all love to see more extensive research done in the area of exercise and ALS, but at the present time it just does not exist.

I would be interested to learn the source of your statement that there have been people who have been cured of ALS. Could you please post links to this?
Guillain Barre? Yes. ALS? No. Misdiagnosis? Probably.
 
Dianan, Momap53 is right--your mom is in an abusive situation and can not be left alone. You are right to be concerned for her safety. she would be far better stating with her sister or you even if that means loosing her stuff to your dad. Take just what is most dear and important and GET HER OUT OF THERE. I was so disturbed by the statement that your dad kicks at her feet to make her mve faster--what a monster. if she falls she could split her head open or break an arm or die. OMG.

I know you don't want to believe what we are telling you about her muscles and decline--but what everyone is telling you is the god's own truth. she is not going to get better. you need to check the ALS association website or the Mayo Clinic website for the TRUTH--there are many scams and liars out there who want to prey on sick people and their families.
 
The current doctor who my mom is going to has a file of someone who was cured of ALS. The patient allows the doctor to show other patients, to encourage them that it can be done. My mom talked with the woman directly after getting her phone number and she told her her story. She was bed-ridden, diagnosed with ALS, couldn't hardly move, was on feeding tubes and oxygen. She had gone to every specialist from California to Canada with no hope. She started getting help from this doctor and the first four months she couldn't tell a difference. But then she was gradually able to get up and move more and more. By the 9th month, she was able to walk on her own and is now gardening as though she had never had the disease. This is just one of many stories I have heard from doctors.

Anyways, back to my mom--my sister is starting to get really stressed out now. She's been there all week and wants to get back home just to "get away from it all". I asked her if she would want to move back here and I could tell I hit a hot button. She went on and on about all the things she needs to get done back home and everything that she would have to do if she were to move back. She said she can't just stop her life. I can understand that, but I feel like it's being put all on me. At our meeting last night, my aunt pretty much volunteered me to start taking care of my mom. My sister keeps saying, "you've got a difficult task ahead of you." I have four kids to take care of that run me ragged. I have mountains of laundry and dishes. I tried taking care of my mom when she was able to walk with a walker last year. I was there for three days in one week. I came home exhausted and I had no clean clothes and no clean dishes, but was too tired to wash them. I ran out of gas in my car and had no money to fill it, so I couldn't go back to my mom's. We really need two CNA's with my mom at all times, but nobody can afford it. I found out that hospice only covers one CNA to be there twice a week for one hour to give her a bath. She needs much more than that. I wish so bad that my parents would just sell their home and a lot of their stuff that they really don't need, and move somewhere more feasible for them and use the money for selling their stuff and home to go towards a CNA. But they don't want to do that. Oh, and another thing, my mom and dad have a dangerous level of arsenic in their water--another reason to move. I washed their dishes yesterday and my hands started burning. I have really sensitive skin and have to use gloves when I wash my own dishes, but this burning sensation lasted about an hour. This can't be good for my mom.
 
Just out of curiosity, if someone on here DOES get cured from ALS, and it is shared on here, will the poster be banned from this forum just because it is believed that there is "no cure" and if someone mentions something that helps als patients that the moderators do not agree with, will they be banned too?
 
Dianan, I believe the answers to your questions would be no and no. The point is 1,000's of people come on this forum looking for help too and need factual answers and direction based on probable expectations. To a person I would expect that everyone here with ALS or who cares for someone with ALS hopes for a "cure". The very real fact is 99.99% of us will not get one and we need honest, factual answers and direction to accept, deal with and cope with our illness. It's all well and good to hope for a "cure". It's mature, responsibly and helpful to deal with the reality of life head on. I hope you are able to help your mother as best you can with all of her many difficulties. Many people here can help you do so.
 
Kiwisally, I understand that people need to face reality that they may die, but also realize that without seeking treatment, then the outcome will be death. I see a lot of Americans who rely on the FDA and USDA to tell them what is and what is not. I have seen many people who refuse to believe there's a cure for something simply because it is not administered by the USDA. If it cannot be patented, then it's not a real cure. I've also seen many drugs for treatments that cause more problems than the originally illness.

what everyone is telling you is the god's own truth.

God knows the cure, the USDA does not. There was no KNOWN cure for syphilis and many other diseases caused by bacterial infections until the discovery of penicillin in 1928. Before 1907 there was no KNOWN cure for sleeping sickness. Before 1932 there was no KNOWN cure for streptococcus. So you see, science is always advancing. People are always learning more than they knew before. It does not mean that all of a sudden there's a cure. The cure was always there, it was just undiscovered. Can you imagine if nobody looked for a cure for any disease simply because they were told there was none?

I have been doing a lot of research on ALS and have found that America is seeking for a drug cure, while other countries have already discovered the cure.

I want to share with you a story that I think is important to remembering how powerful the mind is. There were two men with identical names who were being seen by the same doctor. One man had a terminal illness and was only expected to live 6 months. The other man was healthy and had many years ahead of him. Somehow the nurse accidentally got the charts switched. The terminally ill man was notified that he was healthy and he simply needed a little rest and stress-relief. The healthy man was notified that he was terminally ill and had only 6 months to live. Gradually, the healthy man became sicker and sicker. Six months later, the healthy man lay in his bed and died. The terminally ill man went back to the doctor for a regular checkup and was found to be healthy, with no illness.

Here's a story that my mom's doctor told her about his friend: His friend had polio, which caused him to be paralyzed. As he lay in the hospital bed, he concentrated on moving his thumb since that's the only part of his body that he could move. After a while (days or weeks later), he started being able to move his fingers. So every day he concentrated on moving his fingers. After a while, he could move his hand, then his arm. He was sent home from the hospital and he told his wife he did not want her to help him other than to go to the bathroom and feed him. He had her put a mattress on the floor. Every day, he practiced moving until he could move more and more of his body. Eventually, he was fully recovered and had no paralysis.

Here's another story my mom's doc told her: There was a man who got into an accident and ended up in a coma. For months, he wasn't showing any improvement. There was a specialist passing through town, so the man's wife went to him and asked if he could see her husband. When he went to the hospital, the room was dark, the lights were off, and the curtains were closed. The specialist called the doctors and nurses in and told them, "This is what I need you to do: Turn the TV on and have it loud, pull open the curtains, keep the light on, get some boards and every time you walk by his room, clank them together, and poke him all over his body." Within a week the man was out of the coma. The wife called the specialist and asked him why those things worked. He said, "When he was in the coma, it was peaceful and quiet, he didn't have to do anything. Then the noise and poking made it so uncomfortable for him, that he had to get out."

Here's one last story from the doc: His daughter was born with cerebral palsy. The doctors told him she would never amount to anything. He and his wife decided to work with her every day, for 20 minutes 18 times a day. He massaged her and did physical therapy with her. At the age of 8, she is fully able to do everything anybody else can do.

One thing that I have been noticing about this forum is that there are a lot of people who are saying that nobody is going to get better. This is dark, gloomy, and negative. If you are told you will not get better, what are the chances of getting better? Zero. If you seek treatment and do everything you can to keep yourself healthy, and keep telling yourself that you will get better, there is a chance of getting better.

Where there's a will, there's a way.

I wish everyone the best and hope that you find what you're looking for on this forum. For me, I will continue searching for ways for my mom to get better and help her any way that I can. I hope the next time I'm on here, it's to let all of you know that my mom is cured and doing well.
 
"I hope the next time I'm on here, it's to let all of you know that my mom is cured and doing well."
Nothing would please me more. All the best to you and your mom.
 
Dianan,


What you have told us are just that, stories. I mean no disrespec. My youngest wasn't supposed to live past 1 year. On easter,april 8, we will celebrate her 12th birthday. Is this a story? You will never really know. But its true. What I'm trying to say is, don't believe everything you rekad, especially from other countries.

There is only 1 person of the hukdreeds that have been diagnosed has gotten better. He still has als and is not "cured".

I pray that your mother does get well and you revisik us and give us updates on your her.
 
I wish everyone the best and hope that you find what you're looking for on this forum. For me, I will continue searching for ways for my mom to get better and help her any way that I can. I hope the next time I'm on here, it's to let all of you know that my mom is cured and doing well.

The name of your miracle-working doctor would be far better information. After all, he deserves credit for all of the people he's saved from this dreadful disease, doesn't he?
 
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