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swtflwr

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Hello to everyone. My 53 year old mother was recently diagnosed with ALS this March '06. She was relatively healthy until the end of last year when her symptoms began. It has been very difficult for us and we do not know how to help her best. She has been losing weight rapidly and I don't know what supplements to give her. She is taking the Rilutek, which she hates due to the aftertaste. If anyone has any ideas about natural remedies like Protein Powders to help maintain her weight, I would appreciate it. It is all so hard. It gives me great courage to know there are many of you who actively participate in forums like this one to support those of us new to this. Thank you. I would welcome any words of advice or anything really. I try to read as much as possible and try to talk to my mom about things unrelated to her condition to take the focus away from the disease. Thanks for taking the opportunity to read this and I hope to hear from some of you. Thanks again.
- Lili
 

shackney

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Feb 28, 2006
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Swtflwr,

Sorry to hear about your mother's diagnosis. My father was diagnosed three months ago. We have come to find that the most important ally in the fight against ALS is a positive mental attitude -- which is more than just words, because the disease can really have an impact on psyche as much as the body. Staying positive is the starting and ending point of everything related to ALS.

Staying positive is more than just a state of mind -- it is also a by-product of feeling that you are doing as much as you can to anticipate, understand, and work within the confines of, the disease. To that end, I recommend joining local area support groups, sifting through the posts on this board, and checking out the board at ALS TDF, located at als.net. The ALSA website is good, as are university websites like the Johns Hopkins site. The more you read, the more in "control" you can try to feel about a disease that is very much about trying to deprive you and your Mom of control. For example, understanding that a wheelchair may one day be required is initially a scary fact. But once you accept it, learn the alternatives (including how to finance them), and begin to see the wheelchair as a tool, not a lodestone, you are on the road to success.

There are many treatments being examined right now -- and many will fail. One treatment of interest is called EGCG -- which stands for Epigallocatechin gallate, an extract from Green Tea. There are few likely toxicities associated with EGCG, and many PALS hope that it may help important processes at the cellular level. Rather than wait for a clinical trial in humans to prove efficacy, many PALS will take supplements where there are low levels of concern regarding toxicity. (A standard disclaimer is a good one -- you should always consult with a doctor on everything that goes into a PALS body. Right now, you are reading the writing of a lawyer if that tells you anything!) My Dad takes 1000 mg of EGCG every day. We hope that it helps slow the disease.

The last three months have seemed like three years. But getting up the learning curve, doing all that you can to master the information relating to the disease, and doing your best to stay positive is the best advice I can give after three months.

Hang in there.

Steve
 

Al

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Hi Lili. Welcome to our forum but sorry you have to be here. Have you tried the local health food dtore. I think they sell protein drinks like Ensure and Boost. Drug stores have them or can get them for you as well. Some of the others that have had weight loss problems may be able to give better advice.
 

John1

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Hi Lili,

"There are many treatments being examined right now -- and many will fail. One treatment of interest is called EGCG -- which stands for Epigallocatechin gallate, an extract from Green Tea. There are few likely toxicities associated with EGCG, and many PALS hope that it may help important processes at the cellular level. Rather than wait for a clinical trial in humans to prove efficacy, many PALS will take supplements where there are low levels of concern regarding toxicity."

Just a note of caution before you give your mother EGCG. I take it for the reasons suggested above but it is sold primarily as a weight loss supplement - perhaps not what your mother needs right now. I'm not having a problem with uncontrolled weight loss due to ALS. In fact I would like to shed a few pounds.
 

marlo

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Feb 20, 2006
Messages
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swtflwr said:
Hello to everyone. My 53 year old mother was recently diagnosed with ALS this March '06. She was relatively healthy until the end of last year when her symptoms began. It has been very difficult for us and we do not know how to help her best. She has been losing weight rapidly and I don't know what supplements to give her. She is taking the Rilutek, which she hates due to the aftertaste. If anyone has any ideas about natural remedies like Protein Powders to help maintain her weight, I would appreciate it. It is all so hard. It gives me great courage to know there are many of you who actively participate in forums like this one to support those of us new to this. Thank you. I would welcome any words of advice or anything really. I try to read as much as possible and try to talk to my mom about things unrelated to her condition to take the focus away from the disease. Thanks for taking the opportunity to read this and I hope to hear from some of you. Thanks again.
- Lili
Hello,

When i answered your other letter ,, i had not read this post. I really dont' know anything about the protein powders etc. My neurologist put me on COQ- 10 ------- 400 mg per day. He said more than that has not been proven to give anymore benefit. So thats all that i take at this time. My doctors do not recommend Rilutek ,, but i know that alot of the people on this forum do take it. So maybe they can give you more helpful advice in the medicine department than i can. I will pray you find the answers your looking for.

Love and Prayers
Marlo
 

swtflwr

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May 1, 2006
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Loved one DX
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US
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Miami
Thank you, Steve, for sharing your experience. We try to remain positive and share as much quality family time together. Though, sometimes it's hard, especially during dinner. She has been struggling with loss of appetite due to increased problems with her tongue and the aftertaste of the Rilutek. We have looked into a Soy Protein to try to maintain her weight, though I emailed the Neurologist to ensure it is ok for her to take. Thank you again, Steve. I pray for a miracle for all of us, though also pray for understanding and acceptance for what we can do for right now.

Sincerely,
Lili
 

swtflwr

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May 1, 2006
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Loved one DX
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FL
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Hi Al,
Thank you for the support and the suggestion. We bought a protein powder and she sometimes takes the Longevity shake, though she finds it too sweet. However, due to her continued weight loss, I think we will have to increase the shakes.
Thanks again and I hope you are well.
Sincerely,
Lili
 

swtflwr

New member
Joined
May 1, 2006
Messages
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Loved one DX
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US
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FL
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Miami
Hi John,
Thank you for the information. I hope you are well today. Yes, we are highly interested in maintaining her weight. Although she is currently at her ideal weight, the problem is she has lost over 30 pounds within about 6-8 months. The Neurologist is very concerned and I am in the process of scheduling a follow up visit with him to also meet with the Dietician for assistance.
Thanks again,
Lili
 

swtflwr

New member
Joined
May 1, 2006
Messages
5
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Loved one DX
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US
State
FL
City
Miami
Hi Marlo,
As I expressed in my other message to you, I greatly appreciate your information and support. The Neurologist actually suggested today that if my mother has been feeling so many negative effects with the Rilutek that she should stop taking it. I will follow up with the ALS Clinic to schedule an appointment to see what other options my mother might have, as the person I needed to speak with was not in today. Thanks again.
Lili
 

Granny

Distinguished member
Joined
May 18, 2005
Messages
205
Hi Lili,
Sorry to hear about your mother. I also had rapid weight loss and the answer to the problem for me was to get a feeding tube. I had lost 40 pounds in 6 months or so, and after getting the feeding tube have been able to maintain my weight for over a year. I know this is a big step to take, but it has been a positive one for me. I have Bulbar ALS, so swallowing is a problem for me. There are different nutritional suppliments you can use with the tube. This is just a suggestion of something you might explore.
Hugs and prayers, Leah
 

dana

Distinguished member
Joined
Mar 17, 2005
Messages
216
Lili,
My dad also had a very rapid weight loss. It was such a struggle to get him to eat. I always felt so bad for him because all the joy of eating was gone and it became a burden for him. We would bring him food every couple of hours and watch him struggle to try and eat it. He had fears of choking on it and it took him forever to get a little bite down. We tried doing Ensure for 2-3 weeks, and he was able to maintain his weight for the most part. He got pretty sick of only drinking Ensure. He eventually went in and got a feeding tube and it has been such a blessing and so so easy. He has had the feeding tube since the middle of Feb. and has gained back 20 pounds. He has some energy again and even has a little bit of his pot belly back. My dad was very leary of getting the feeding tube, but we have had nothing bus success with it. It might be something worth looking into for the future (if your mom continues to drop weight).
Good luck,
Dana
 
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