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miana

New member
Joined
Nov 12, 2008
Messages
6
Reason
Loved one DX
Country
CA
State
ON
City
Ottawa
Hi!

I am new to the forum. My mother was recently diagnosed with ALS. It started with a drop-foot and has started to progress. She has not yet gotten her blood test results but she did some sort of urine test to test the heavy metals and her lead and mercury were really high (lead 3x normal).
Anyways, she really wants to go away for a couple of weeks to "detox" naturally and also get psychological therapy to help her come to terms with all this.
I want to support any decision she makes but I am weary about this type of treatment. I have heard horror stories of people wasting lots of money and time only to find out it didn't help. In addition, I don't know if a magical place like this exists....

We are in Canada and it is cold and dreary. My mom is saying she just wants to go away and be taken care of for a couple of weeks to receive treatment. She lives on a farm with horses, dogs, cats and birds that need taking care of and she is completely overwhelmed....

I just want to hear any opinions or advice anyone has out there. I just want my mom to be happy.

thanks for listening.
:-?
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Miana ... If your mom wants to get away to process this diagnosis, I'd say that's a good idea. I was overwhelmed, too, at first, and didn't want to see family members, etc., because it would just make me cry. I needed to get a handle on it myself and come to terms with what was happening to me.

As for the detox .... I think you are right that a lot of scams exist out there, and people can waste a lot of money that they might get a lot of enjoyment out of. If your mom could put off the detox and just get away by herself for a while to adjust, that might be a better solution. I'd say to trust your mom's instincts on the getting away part.

Take care.
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
Hi Miana,

I agree with Beth's comments completely. Detox is likely the ALS scam that the newly diagnosed first turn to. It sounds plausible. Even it it were to prevent the onset of ALS (untestable), it certainly does nothing to slow down or alter the course of the disease once started. In fact nothing has been shown to do that to date. Even Rilutek is arguably ineffective but may prolong life span marginally. There are several therapies though that will help with symptoms as they develop. I would suggest you all take time to digest this devastating news and by all means get your mother to a pleasant winter climate to do so.
 

Shawn

Member
Joined
Feb 4, 2008
Messages
16
Reason
PALS
Diagnosis
01/2006
Country
CA
State
Ontario
City
Mississauga
hello neighbour!
tell your mom to go away! Literally! :-D
when I was diagnosed, my wife and 2 year old son went to Florida for 2 weeks. We just needed to get away and feel normal! Too many people dropping in and phoning!
now that I can't travel i am very happy i did go and see my little man at the beach, chasing the birds!
happy memories!
regarding natural remedies: if I could do it all again, i wouldn't waste my money. We tried homeopathic x2, naturopathic x2, massage therapy, acupuncture, eating organic, raw vegan, hyperbaric chamber and a whole lot more. Spent thousands. Some made me feel better, gave me energy but I don't think anything slowed my progression.
honestly, the people who sell these products and services are really only guessing. They don't know; if they did, they would be rich!

is your mother seeing Zinman at Sunnybrook?
welcome to the forum!

Shawn
 

miana

New member
Joined
Nov 12, 2008
Messages
6
Reason
Loved one DX
Country
CA
State
ON
City
Ottawa
Thanks for all your quick replies. I will try to do everything I can to make my mom happy... I just spoke to her and she is adamant that she wants to detox. She won't be satisfied until she does that.

I know she also needs to get away for the same reasons you did Beth. I can tell the way she looks at my son how hurt she is. I wish I could make it all dissapear.

Thanks again for all your comments.
M
 

miana

New member
Joined
Nov 12, 2008
Messages
6
Reason
Loved one DX
Country
CA
State
ON
City
Ottawa
Sorry I forgot to say to Shawn... my mom is in Montreal and she is seeing Dr. Genge. I am actually in Ottawa... I don't know why says Toronto.
Thanks again
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
Country
CA
State
Quebec
City
Montreal
Hi Miana,

First of all, I am sorry for your mom's diagnosed.
I know how you feel. My dad also lives in Montreal and was diagnosed with ALS in August 2008. He and my mom are planning to spend the winter in Florida. He also sought vitamin therapy and sees a wonderful holistic doctor in Montreal. However, everyone is different, which is something you will hear again and again with this disease so I am by no means advising anyone to seek holistic doctors. Some people respond very negatively to Rilutek while others swear by it so what is good for some may not work well for others. Well my dad immediately felt better when he started his vitamins and eating differently. He sleeps through the night now and he even sounds better (he has Bulbar onset.) Several family members have remarked on his improvement. I don't know if the regimen he's on is actually working or if it is having a placebo effect on him but whatever the case, my dad feels better and that's all that matters to me.

I know it's tough. Hang in there! You came to the right place. There is a lot of valuable information and wisdom here and it helps to know that you are not alone.
 

miana

New member
Joined
Nov 12, 2008
Messages
6
Reason
Loved one DX
Country
CA
State
ON
City
Ottawa
Name of holistic doctor?

Thelma,

Thanks for your reply. Is it possible you could give me the name of the holistic doc in Montreal? My mom needs some guidance on the holistic front of things.

I am happy to hear your Dad feels better and I am looking forward to that day for my mom...

Thanks Again!
M
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
I'm probably going to open a can of worms here but I just have to speak up about scams. There are all kinds of ploys that get us to spend our money. We are told we need to detox by those that want to sell us whatever it takes. They tell us we are full of heavy metals and mercury etc. Doesn't that sound a little looney? If you go to the chiropractor they will tell you your spine is out of line. We couldn't walk if our spine were out of line, nor could we stand the pain. Oh yes, and we NEED to be popped! That's just loose ligaments and tendons popping to protect us from the repeated impact. Think about that one. Then there are those that believe in vitamins and other supplements in large doses. You can really mess up your body by ingesting those! We need natural amino acids and vitamin C etc. to keep ourselves healthy. All those people who take them have, is high octane urine, for most of what is taken goes out that way. Pay attention to commercials and ads. Everyone has something YOU MUST HAVE. Oh, you must have it, after all, it is found is breast milk which we all know is the best food! So send me your money. I am all for support systems and keeping as healthy as we can, but remember to protect your bodies. Anything in excess is dangerous. Even too much exercise can speed up a PALS progression. Eat well, live right, and keep those chemicals OUT of your bodies. There, I feel better having let it out>
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
Country
CA
State
Quebec
City
Montreal
Hi Miana!

I would be glad to share the doctor's contact info with you. You can reach me at [email protected]

This doctor was also a psychiatrist for over 20 years and has been a great comfort to my dad so I hope your mom finds some comfort too.
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
Country
CA
State
Quebec
City
Montreal
Hi Miana,

I responded to your post however I believe the forum has rules about sharing information about alternative treatments which I understand completely. I would not want the forum to be flooded with people with crazy ideas about what might cure ALS. Sadly there is no cure and yes there are a lot of people out there trying to make money on detoxes and the like. My father didn't do any detoxes by the way and our holistic doctor has been treating the entire family long before my dad was diagnosed with ALS and he does not sell anything in his office. As soon as you can send personal messages you should send me one and I'd be happy to share his name with you. I did not mean to offend anyone of course and I certainly did not insinuate that my father was being "sold" a cure. He simply feels better, has a lot less phlegm and sleeps better and for us, that is a blessing. He was never tested for any heavy metal levels or anything like that.

He has a wonderful neurologist too. Her name is Dr. Souchon and she is an incredibly nice woman and very supportive of his efforts.

All the best to you and your mom!
 

miana

New member
Joined
Nov 12, 2008
Messages
6
Reason
Loved one DX
Country
CA
State
ON
City
Ottawa
Thanks

Thanks to all your responses. Thelma, I have emailed you.
M
 

Bucket

New member
Joined
Aug 4, 2008
Messages
7
Reason
PALS
Diagnosis
05/2008
Country
US
State
TX
City
HOUSTON
I know how your Mom feels. I also just wanted to get away and do something about the disease. The truth is that you may not be able to cure it but you may be able to slow it down. First, Get rid of the anxiety, get couselling, anti-depressents,less resposibilibility. whatever. Anxiety can speed it up.
 

ccsam15

New member
Joined
Apr 2, 2008
Messages
7
Reason
Loved one DX
Diagnosis
11/2007
Country
CA
State
NL
City
Paradise
I would agree to anything she wants to do! My mother was diagonsed November 9, 2007 a day after her 65th birthday. She wanted to try anything and everything that could possibly prolong her life. Somethings we thought were useless but we agreed to it anyways to please her. She died May 5, 2008 only 6 months after being diagnosed. The days preceding her death she wanted to go to the hospital (she felt more comfortable and safe there surrounded by doctors). If we had our time back we would have brought the moment she asked to go to please her and settle her mind!
I would agree with your mother, its her life and let her do anything that would make her feel comfortable and give her some peace of mind!
 
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