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trtt

Member
Joined
Dec 29, 2009
Messages
14
Reason
Loved one DX
Diagnosis
12/2009
Country
US
State
Oregon
City
Monroe
Hi there, My family was devastated on Dec 22, 2009 with the news that our mother and wife was diagnosed with ALS. My Mom is a young 69 year old, that has been healthy for all of her life. Just a few months ago she started complaining about not having ability to grip items with her hands as she once did, then it all started. She has been through major extensive testing over the last couple of months and has been to see many doctors, ending up with a neurologist and then an ALS specialist in Phx AZ. They are telling us as a family that my mom's test results show evidence for ALS, and that she is in the very beginning stages. She actually is quite well, except for weakness in her hands and arms.
I'm looking to make as many friends in this forum as possible to keep us going forward in a positive way. I would like to ask some questions to hopefully get feed back from you who have the experience and knowledge. I have been researching for days and nights, learning as much as I can about this disease and what can be done.
However, I would like to ask you the people who know.

A. Is detoxing important? Does it work? Does it need to be continued?
B. Did you change your diet to completely eliminate toxins, what do you eat?
C. Is the homeopathic way a good way to go?
D. What supplements have work for you?
E. Do you take the Rilutek Drug and has it worked for you?
F. What level and types of exercising is good to continue?
G. Has anyone out there tried the stem cell therapy?

We had a couple of different doctors give us suggestions with plans to follow and of course prescribe the Rilutek. My mom tried the Rilutek, she had only been taking it a day or two and noticed some side effects. The doctor then told her to stop taking it for now? I wonder what that means? I'm really searching for knowledge...

Any help will be greatly appreciated.
Thanks so much
trtt

F.
 
I am sorry about your mom. It does take awhile to get over the initial diagnosis.

Unfortunately there is nothing that has been proven to help slow the progression. The best thing is to eliminate as much stress as possible and keep her weight up.

Take care of yourself and give yourself time to adjust.

We are here to help however we can.
 
Thank you Joe.... your thoughts are appreciated.
 
trtt, sorry about your mom but welcome to the forum. We are all here to help each other in any way that we can so here are my answers to your questions:

A. I have never believed in detoxing
B. No, see A. I cant eat much of anything now but when I could I just ate what I always did.
C. Don't know anything about homeopathic but as long as it doesn't cost too much or make your mom weaker or cause her to lose weight then why not.
D. None, have never taken any
E. Have been on Rilutek since Jan of 2008 and I have no idea if it has helped or harmed me. I feel no different with or without it and have had no side effects.
F. My doctor prescribed some range of motion exercises for me to do but because I am basically lazy I haven't been doing them. My PT keeps bugging me and I keep saying "Yeah I should do that"
G. No interest in going to China or Mexico and I think it is too early. It may work someday but not yet.

There has been much discussion on the forum about both Rilutek and stem cell therapy so give the search function a whirl and you will find lots of info.

Those are just my views and experiences and I know others here will give you theirs so again, welcome and I hope that we can help you make sense of all this or at least as much sense as anyone can.

Barry
 
Hi trtt, I am so sorry to hear about your dear mom's diagnosis. I know the pain you are going through. I was in your place on March 29, 2006....that is the day my then 37 year old son was diagnoseded with this killer disease. It was a nightmare I had experienced then. It changed me forever. It hit me in full force like a ton of bricks. When I found out that my son had a disease that had no cure, I wanted to die badly. I had no desire to live. I fell into deep depression. I went through some very ugly and very sad stages. My life was over. I would go to bed knowing that my son would sooner or later die from this dreadful disease, and when I woke up the next day these ugly helpless thought were still racing in my mind...day in and day out. My son passed from this disease 15 months after diagnosed. I lived 15 months of hell and agony. My son passed at home on June 3, 2007. I so much hated to watch him die, knowing that I was never going to see him again. But deep down in my heart I felt peace...God works with you in mysterious ways. My story is long, but will shorten it by saying that I still miss him very much.

As for your questions, once you are diagnosed it is time for you to learn as much as you can about this damn disease in order to help your loved one. Detox, homeopathic, exercises and such.....I, like Barry, do not believe in none of that. Als keeps progressing, there is no cure dear, another thing everybody is affected differently. Some patients progress quick, while others do not, but it is moving on. This forum is a great forum, you will learn a lot from these folks. A very, very lovely bunch! May God bless you and your Mom. If you have any questions....please feel free to ask.

Irma
 
I too am sorry to hear the news. It is my hope that you don't go all into a frenzy hunting up all kinds of things to try, and wear the PALS out with changing diet etc. ALS is bad enough, and nothing seems to work even in the least.

You can protect, notice I didn't say preserve, the strength and agility in the muscles by not overdoing anything, but casually and gently keeping up with her normal routine. Exercises, and even speed walking isn't recommended. It only depreciates things faster.

Of course a good diet is promoted, but nothing crazy. My PALS (hubby) has slow progression but it probably has nothing to do with his cutting out white flour and things for his diabetes. He wants to stay away from insulin injections as long as he can, so he does that.... and he is overall healthy... takes no meds at age 62... doesn't even have high blood pressure or cholesterol counts. (He eats eggs, bacon, butter every day too.... and 103 cholesterol count).........He is on a Bipap at night

You learn about and watch for signs of more things happening, and prepare yourself by recognizing them and making things simpler in the environment. Rick has congestion in the mornings and stiff fingers..... so he gently works on his latch hook and has coffee until the coughing and sneezing end and he can have breakfast. By then his fingers are ready for the day. We make appointments in the late mornings.

He is losing his balance and can't squat down very far to drop into a chair... and that is what he does.. drop. He chooses chairs that has arms for him to use in getting up and down. He hangs on going downstairs............things like that. He has pride too, and he carries assists in the trunk, but doesn't often pull out the wheelchair, walker, or cane as yet. When we go to the park for a concert, he pushes the wheelchair over to where he will sit, and then sits down in it. People see that he isn't yet crippled, and that makes him happy. This works just like walking behind a shopping cart in the store....gives you balance.

He uses his wheelchair to sit at his cardtable to do latch hook or paperwork. It allows him to roll back and forward to get up and down, and allows him a wide seat. When he sits in a regular chair, he bends the legs with the force of getting down, and has trouble pulling the chair forward to get closer. The cardtable is nice because he can pull it to him... it is so light weight.

Rick is still driving, gently shoveling snow, weedtrimming, and going to the ELk's Lodge to be their treasurer. Notice I didn't say he mows the lawn. He would overly perspire and become very weak if he did. He works during tax season, at home on his remote access to the office on his computer, and does a day's work in his own time. When he gets a box of forms done, he goes in to trade for another.

I wish you all the best there is for a journey that is loving and supportive. Treat your mom like almost nothing has changed. She is still the same mom she always was.....help her only if she wants it.... don't treat her like she is dying. This may not take her life and only barely affect it for a very long time.
 
I can't add much to the excellent advice already given except-become a vocal and powerful ADVOCATE for all of the PALS! Web had a heart healthy diet prior to the diagnosed, never drank, never smoked, never did drugs, ran 3 to 5 miles a day. We have always tried to eliminate or lessen exposure to toxins. All of the testing that he had showed NO heavy metals, no toxins, no lyme etc. Supplements-tried them all and have not seen any improvment. Rilutek made him ghastly ill after 3 weeks so he is not on that either. Exercise is now gentle stretching. Stem cell? Too early to say but maybe someday in the distant future. Educate yourself on the symptoms so that you can advocate for your Momma. We fired our ALS Clinic and see our family Dr. He refers us out to any specialties that Web needs. Most of us have a PEG [feeding tube] and Bipap. Some do have a trach. Cast a critical eye over her house and see if it is ADA friendly and start making plans to modify for when that time arrives. Look into what is available for home care. Have her apply for SSDI if she is elgible as it takes 5 to 6 months before you receive any of your SSDI money. ALS is a fast track for SSDI and automatically qualifies her for Medicare A & B. Make contact with your local ALSA and MDA! Last but not least, ENJOY every moment and live in the present moments-take photos, make a memory book, share the moments with joy.
 
Hello trtt, I'm sorry to hear about your mom's/wife's diagnosis. It is good though that she has not had too much progression so far. I hope it stays confined to her hands/arms for a while, but be prepared to see other body parts involved.

As far as nutrition and such, I know how much you want to find something that will help. My wife is the same way with me. I have been eating gluten free since the diagnosis, largely because I have had IBS type symptoms ever since a severe bout of food poisoning 4 years ago, which my wife thinks must have caused my ALS. I take a ton of vitamins and antioxidants, following a program by David Perlmutter, a Florida neurologist who claims to have helped PALS. I take over 30 pills a day. I am using intravenous glutathione, which is supposed to detoxify my nerve cells. I try to eat foods high in cholesterol and saturated fat, which believe it or not has been shown to be healthful for PALS. I use coconut oil, because someone reported that it helped too. I drink alkaline water because "disease cannot thrive in an alkaline body" according to the company.

All this, and my progression has been normal or even a little faster than average. I honestly can't say anything has helped. I do take Rilutek which theoretically offers some benefit, but you can't prove it by me.

When I was diagnosed I was in denial and kept up my vigorous exercise program. I was running over 10 miles a day sometimes. However I burned out my legs and now I can't run at all, and walk with a cane. So my experience would argue against hard exercise. The recommendation is easy movement, keep up the range of motion and general muscle tone.

Several PALS there are trying stem cell treatments in Monterrey, Mexico. They are reporting on their results. One member died a few weeks after treatment, which has been a source of some controversy as to how sick he was before, whether the strain of travel and surgery may have contributed. Others are doing OK but it is too soon to expect to see any results. You do have to pay on the order of $20,000 for this kind of thing.

There are a number of new and promising stem cell treatments and studies which are supposed to start up this year. However the procedure is still very experimental and people are essentially guinea pigs. It is good to have hope but realistically it will be a wonderful miracle if any of these treatments makes a big difference in survival.
 
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welcome trtt.....so sorry to hear about your mom's diagnosis. i just moved from phoenix. i dont know what neuro she is seeing, but i can tell you that todd levine of phx neurological is the best you'll find. i absolutely loved him, and his staff is number 1 and made me feel so special.
 
I'm so sorry to hear about your mom. This forum is a great place to get feedback on how others are facing this journey and I hope it will be a source of support for you. With regard to your questions,
- haven't done anything in terms of detox
- when I was first diagnosed I decided "no more diets" -- this turned out to be a good instinct because losing weight is associated with poorer outcomes with ALS. My neuro who is a big ALS researcher honcho says forget the ketogenic (high fat high protein) diet; when they studied it it was associated with weight loss and thus faster progression. He says just eat a healthy balanced diet.
- dont know anything about homeopathic treatments
- i take B complex and coenzyme Q10 plus a multivitamin
- i take Rilutek; it is the one drug shown to slow progression of ALS
- i'm pretty weak and in a wheelchair so i dont exercise much beyond some light range of motion stretches, but in the beginning they said moderate exercise was good as long as I didn't get too tired, and no weightlifting
- they are starting some stem cell trials, but with patients who are in the late stages of the disease
Good luck to you and hope all this is helpful.
 
Welcome to the forum trtt. I think you have been given some excellent input from others here. The members here keep each other updated on promising research news.

I read like a mad woman when my Dad was diagnosed too looking for a cure or something to at least slow the progression. This forum is full of helpful information. We did not find any meds or regimens that were proven effective. Limiting stress, not overdoing physical activity and maintaining weight were stressed consistently in the research. I am hopeful that an actual cure is found and quick or at least something that is proven effective in slowing the disease.
 
Hi trtt, I am really really sorry to hear of your mom's diagnosis. I truly know how you feel and you sound so much like me when my dad was diagnosed. I spent every second of my free time researching what we could do. My dad saw a homeopath and was spending close to $2000 per month on supplements, herbal medicines, vitamins, clay foot baths, injections and all sorts of concoctions and faith healing. My poor dad was swallowing over 40 pills per day for months and he had bulbar onset. Finally, I think 6 months later, he said, "I don't want to continue taking this junk anymore." My mom and I felt terrible as we were the masterminds behind that natural approach but my dad knew that it wasn't doing anything for him.

I think you got some amazing advice... keep your mom's spirits up, keep her life as stress-free as possible, keep her weight up, and make wonderful memories with her. We have PALS here that have been diagnosed many years ago and they are still enjoying their lives. There is no telling how slowly she may progress. There is always hope. 2010 is supposed to be an important year for ALS research. Most importantly, make your mom laugh and give her lots of hugs and kisses.

Also, take good care of yourself. It is so important. I have to heed my own advice....

Best of luck to you and welcome to the forum. You are among friends.
Rosella
 
Hi, trtt

Plenty of good advice there, but I honestly think the most important thing is to make the PRACTICAL side of life as easy as possible. Ease the way for what is to come by making the house, the contents and garden as accessible, as easy to use as possible.
As to food, I think I have the right now to enjoy whatever I fancy and not get a guilt trip about it, so give her what she LIKES. Pleasure, laughter, love, lightness of spirit are what she needs, I am SURE.
And we will provide whatever we can from our distances
Love to all
 
Hi and welcome trtt,

My mom who is 66 was diagnosed in March 2009 and later confirmed in the summer. I asked a million questions here and found great answers and great friends. My mother did not follow any detox diets. She did try rilutek and the side effects were just too much for her. She is taking vitamins and trying to keep her weight up. I feel weight is one of hte biggest things to take care of. She was doing exercises, but she feels like Barry and just doesn't feel like doing them. The first few weeks dealing with the diagnosis are the worst. When people first told me that, I thought I would never be able to deal with this. Now it is just a way of life for us and although we have talked about my mothers wishes we don't dwell on the negative. We try to take each day and make the best of it. I am not sure who on these boards has the saying of "don't borrow tomorrows troubles today", but I have used that so many times and try to live by that. I hope you can find the answers you are looking for and know that this is the best place to be for support and answers. If there is anything I can do to help you please let me know.


Dana
 
Hi Irma, thanks for your input. I'm still in the shock phase of this life changing diagnosis. I think this forum is wonderful and to be able to visit with people that actually went through this or have it now is very valuable.

I hope peace comes to you soon.

Thanks again
trtt
 
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