New ALS Diagnosis

[daughter]

Hi, my dad was diagnosed last Friday, 17th March. We are devastated, his weight loss is huge, down to 9 stone, he was 11 stone 5 months ago. He is only 61. He is having trouble walking now and we want to know if the deterioration will continue at this same rate or if it will slow down? To give you an idea of how he has been, in October of last year he was a reasonably fit builder, sitting on my roof fixing tiles!

Regarding vitamins E and B3, also antioxidants, does anyone have any experience of these? We are desparate to try anything. A doctor, who is not an ALS/MND doctor, told us yesterday that some sufferers may live as long as 2 years? Talk about rock your world. I was under the impression that you can live for a fairly long time with this disease.

Sorry to waffle on but I am so desperate for some answers, ideas or suggestions.

Thanks.

 

[hope]

It is truly heartbreaking what you are going through. I am not able to answer some of your questions because I honestly do not know the answers but I can share with you what a leading ALS expert told my husband and I. He said that no one knows how long each person with this disease has. Some progress very fast and some can do well for a long time. Everyone is different. I know this is frightening and I have said many times I wish I knew the right words to say to you in this very difficult and painful time. Some people I have read have lived many years, this gives us all hope. Keep hope in your heart, never give up, the cure could be soon found. Our thoughts and prayers are with you. One thing I can say here is the people here on the site are very kind, caring and supportive. It is nice to know we are not going through this alone.

Sandy.

 

[John1]

Hi Daughter,

So sorry you find yourself here but it is a good place to get support and information about MND. In my experience, and that of many others, the first month or so after diagnosis is the worst they will have to deal with. Most PALS learn to accept their condition and get on with making the best of their lives. Unfortunately medicine doesn't offer much help at the moment but technology does and if you read over some of the posts here you will learn a lot. Many PALS do take vitamin E and anti-oxidants. I take many anti-oxidants, 800 mg x2 day of E, plus C and a one a day vitamin. I don't know if they have helped with ALS but I haven't had a cold in over 5 years since I started them. Search on vitamins and anti-oxidants and ALS here and on Google and you can probably find some regimen that suits you and your dad. Often purchasing anti-oxidants like CoQ10 on-line is cheaper in Canada than buying locally. Not sure what the situation is in the UK though.

As for progression, like Sandy says, it varies a lot between individuals. Some last months and some years. As for your doctor's predictions of some lasting up to 2 years. Well, yes, but many live much longer. I was diagnosed over 5 years ago and am still enjoying life. At this point I would suggest that the best thing to do is give in to the overwhelming grief of the situation but know that you will come out at the other end stronger, with renewed hope and enjoyment. Then there will be time to address the many changes that your dad will have to make to his life style.

-John

 

[kklein]

Hello,
My father was diagnosed about a month ago and since then I have been on every alternative medicine website I could find. I have learned some interesting things about Glyconutrients and anti-oxidants (coQ-10, Green and white tea, and vitamin E, C and Selenium) I honestly don't know how effective they have been for people with ALS, but I've got my own father on 100mg of COQ-10 and Green and White Tea Supplements as well as high doses of E, because I figure they can at leat improve his quality of life and hopefully extend it for a little bit. I am still looking into Glyconutrients though. An interesting and enlightening website I found is called als-options.com There is also a supplement company here in the states called New Chapter that makes an amazing and broad range of organically grown, chemical and pesticide free, top quality supplements. I take them myself and love them. My heart goes out to you and your family. good luck to you and your family.

 

[marlo]

Hello,
My father was diagnosed about a month ago and since then I have been on every alternative medicine website I could find. I have learned some interesting things about Glyconutrients and anti-oxidants (coQ-10, Green and white tea, and vitamin E, C and Selenium) I honestly don't know how effective they have been for people with ALS, but I've got my own father on 100mg of COQ-10 and Green and White Tea Supplements as well as high doses of E, because I figure they can at leat improve his quality of life and hopefully extend it for a little bit. I am still looking into Glyconutrients though. An interesting and enlightening website I found is called als-options.com There is also a supplement company here in the states called New Chapter that makes an amazing and broad range of organically grown, chemical and pesticide free, top quality supplements. I take them myself and love them. My heart goes out to you and your family. good luck to you and your family.

Hello,

I am sure that you have seen your own neurologist already, but i dont' know if they put your father on COQ 10 or if you did. Just in case it was you and not them,,, thought i would let you know that my neurologist put me on it,, but he recommends 400 mg per day. I ask him why some are taking 1000 mg a day? He said he knows of some people taking 3000 a day ,, but that the top doze is really only 400 per day. He said the people taking that amount for the most part are probably people who believe if a little is good alot is better. He said there is no prove of that at this time.

Good luck and God Bless with your father.
Marlo

 

[ladave]

KKlein,

Watch out for "als-options.com", that is part of a group of websites related to "even better now", which many believe to be a scam operation. It is always best to be cautious of people who are trying to sell you something in the guise of "curing" you.

daughter,

You have found Steve Shackel's website and it is one of the most interesting on the web in my opinion. Shackel is not trying to sell anything, he gives information and lets you decide. His views are controversial but worth considering, again in my opinion. I've adopted certain portions of his regimen myself (though I'm taking Rilutek which he does not believe in)

Marlo,

I am very curious about why your neuro thinks 400 mg. is the top dose for COQ10. The Parkinsons study gave doses up to 1200 mg. and found that response was dose-related, i.e., the higher dose had better response (patients given 1200 mg. saw a 40% reduction in disease progress. 40%! imagine an als drug that worked so well.)

Acting on this the ALS study of COQ10 is giving several different doses, I believe as high as 2700 mg./day. There is a new Parkinsons study testing 3000 mg/day. So again, I wonder what the basis is for your neuro's opinion.

 

[ruby ben]

Daughter

Hi - try to keep your chin up. Attitude is a big thing. Quote from my neurologist in Vancouver.........80% of those with ALS die within five years but my record is 33 years. Some patients are turtles and some are rabbits (referring to life expectancy). Keep in touch, this is a great forum with great people...............ruby from vancouver