Hi there I am new here and have been reading alot regarding ALS and searching for little new discoveries but not much yet. My aunt 63 years has been suffering from ALS for the past 2 years now and has only been recently diagnosed with such. I am helping her to try to cope she has very good will power but for this disease it doesnt help much when it comes to walking. She manages to walk with a walking aid and to walk a few centimeters is very very tiring for her. I managed to get a nutritionist home and she gave her some advice like drinking seaweed's liquid, using Blood group diet and a few things she told her made really sense. She gave her supplements like a high dose of vitamin C, Vitamin E and D, evening primrose, Vitamin B 12, folic acid and more. Her legs are very weak but she didn't get worse. She is still eating and swallowing ok. her arms are still quite strong. But it is devastating especially for people around her. I was hoping that water therapy can help if anyone suffering from ALS tried it would love to hear from them. She is on physiotherapy 2 a week. And just started Rilutek medicine. I've heard about Lithium tablets that might help again if anyone tried them i really appreciate some feedback. This is all I wanted to share. One last thing a great man who suffered from ALS said,'This disease may kill me but it will not defeat me'. I leave you with that. Good luck to all.
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ALS and my beloved aunt
- By Sue13
- Posted December 25, 2008 at 5:09 pm · 11 replies
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- By pcormier
- Posted December 28, 2008 at 9:13 pm
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My husband, now 60, was diagnosed almost two years ago with ALS. For many months we did go to our local Y and do water therapy in a heated pool (about 96 degrees). The pool seemed to help alot although it was much work going and coming. The pool was also great as he didn't have to worry about his balance. He used the largest styrofoam weights underwater which gave him a good workout. He had a respiratory problem many months ago and we have not been back. I hope this helps!
- By Sue13
- Posted December 29, 2008 at 8:04 am
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Hi how nice thanks for finding time to reply. I am happy that therapy was good. Its true the fact to have a big hassle going and coming might not be worth it in the long run. Try to take your husband to a good true and honest nutritionist as it might help alot. This nutritionist mentioned a few things that really made sense. Like dairy are very bad and it was one of the reason my aunt had tonsils removed, had a large fibroma and breast cancer. She said that when u eat dairy and the liver noramlly remove access fat into gall bladder. But my aunt had this removed and so liver had no other place to put access fat and was sending them to an empty sac - the womb. Yepp! And that what the fibroma was. It mde alot of sense as aunt ate alot of cheese. Now she is on supplements and it seems ALS slowed down.
- By denisema
- Posted December 30, 2008 at 1:00 pm
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Hi, my mother triumphed through ALS with an unbelievable desire to live. She made it each day at a time each moment at a time. Her family surrounded her and we wouldn't let her get depressed or down. We laughed together, cried together and loved each other. My mom lived seven years with ALS, on a ventilator, with a feeding tube. Can I suggest a juicer. I juiced everything for my mom, Tons of vegetables and fruit. Just try to make her laugh even though I know nothing seems funny right now. Encourage her and love her and be there for her. God Bless You and your Aunt.
- By Sue13
- Posted January 25, 2009 at 7:49 am
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Hi Denisema thks for your message its takes alot ot make her laugh. But she does laugh sometimes but she cries all the time....nothing can comfort her unfortunately. But her will power helps her alot...I know in this illness will power doesn't help much physically ...your brains say I want to move, leg move!!but it doesn't move...but definitely it helps to live say by day. thks again and take care.
- By readmovie3
- Posted October 3, 2009 at 4:18 am
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I know what you are going through, my mother was diagnosed with ALS in January of 2008. I don't know how long she had this disease or how this happened.
I started noticing changes in her, such as rapid weight lost, even though she ate good. Her hands started to weakened. We took her to the doctor for almost 2 years trying to find out what the problem was.
She started falling and could not explain why, several incidents started to happened, even the doctors could not explain why. A phyiscal therpist notice something about her hands and suggest she see a hand doctor, that is when we started pushing for an answer, for a year and half she was test for everything. Finally, the gave us an answer which was ALS. I could not understand and knew nothing about this disease. I started doing research on this, learning of the symptons and slowly watching her closely.
Her Dr. stated he did not know how long she had suffered with this and when it begun. He was honest and told us that she would die from this. Sadly, my mother passed in Oct. 2008, after 9 months of being diagnosed.
- By Sue13
- Posted October 3, 2009 at 11:22 am
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Hi I thank you all for your posts and I am sorry for your mum readmovie3. Would you be so kind as to let me know what are the blood group types cos I have posted a new discussion as I am doing some research that the blood group of those suffering of ALS mostly is A Rhesus. Anyway appreciate you could send me your mum's readmovie3 and denisemia and pcormier too thks and peace be with you!
- By purpleunicorn
- Posted October 7, 2009 at 4:44 pm
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my daddy was diagnosed in aug 2008, he was put on the lithium pills and they had a bad effect on him....he has not taken any since.....not all people are the same the lithium may work for others it didnt for my daddy tho....so keep a close eye out if someone is on them
- By pcormier
- Posted October 12, 2009 at 11:51 am
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My husband died this past July after 2 1/2 years of ALS. He took Rilutek from day one. He also took Lithium although the recent US trials seem to indicate Lithium is not effective. His blood type was A+.
One thing I have never seen in print is the personality type which seems to get ALS. Our support group leader would tell us that he had never met an ALS patient who did not have an "A" type personality. My husband was a precise person: he worked as an engineer and at home while he built our house everything had to be "just right." Things would get him upset that just didn't seem to bother me.
I hope this has been helpful.
pcormier
- By Sue13
- Posted October 13, 2009 at 7:21 am
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Hi pcormier thanks for finding time to reply. It is curious thought that A + blood type persons do not keep vitamins in their body so it could be a great possibility that if the majority of patients with ALS are A+ anyone who had that blood and a history of ALS in their family they could prevent it by taking good food supplements liek folic acid, phosphatidy l serine, B12 always with a nutritionist advice.
- By cindy12
- Posted November 18, 2009 at 2:22 pm
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I just got diagnosed two weeks ago with ALS
Yes, I am going to try the natural lithium. Also I ordered the Book " Eric is Winning". He has survived the longest I have heard of without a resperator by
cleaning all toxins out of his system and eating only organic, etc etc. I was exposed to heavy metals and chemicals working in restraunts with bug spray at the door and cockroach spray along with all the customers perfume, both my parents smoked when I was growing up too. They now know that chemical exposure plays a big part in causing ALS. I would consider reading Eric's book. Aleast it keeps you busy doing something positive. Hope I've helped alittle
Cindy
- By Sue13
- Posted November 18, 2009 at 3:23 pm
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hi cindy12. When there is a will that can help alot I am sure you can slow down the process. Is your blood group A cos I was doing some research about this and there are many ALS patients with blood group A. Let me know. yes I've heard Eric's book it is really good. My aunt unfortunately is not so good. She will soon need the food pipe. It's been 3 years nearly since she got diagnosed. She is finding it veyr hard to swallow. She had some help from my end with natural remedies but she NEVER tried the liver flush and that I suggest alot for anyone obviously you need some professional to guide you with it. Steven Shakel has a very good study and if you stick to it I am sure you will slow down ALS process. this is his website http://members.tadaust.org.au/shakel/index.htm Good luck God be with you!
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