Have you tried something that has slowed your progression?

[Blubear]

[I]My dad was dx with ALS 9/09. As a family, and in the denial stage we have been all over the internet looking for a cure or even hope. What I have found is the common link among long lifers is a possitive attitude. Lithium seems to work for some, and not for others. The same for glutathione. Any type of detox that worked for you? Any of you done a clinical trials of anything and has any success with it? We have lots of vitamins on board now, and as close to a MSG free diet as possible. My thinking is to put him on everything possible. He has the money. His neuro says it's not time for Rilutek now. His speach is slurry from time to time, and his walking is a bit strained. Do you think he should be taking Rilutek now anyway? Also, his metals test and ph balances are all normal. Is that normal for ALS? Please help!
Hugs to all,
Blubear

[Danijela]

Rilutek - the sooner the better, if he does not experience side effects ( strange view from the consultant, we were told the earlier the better). As far as I'm concerned it's the only game in town. Parner does, however, take vitamin E, and just a basic multivitamin.

[BethU]

A big factor in slowing progression is keeping your weight up. My neuro at the clinic said it has proved to be even more successful than Rilutek at slowing progression down. Is he being seen at an ALS multi-disciplinary clinic? As I understand it, outcomes are better for patients being seen by a team of specialists.

So: As Danijela said, start Rilutek early. Start BiPap early (to help rest the diaphragm at night, and extend its strength). Get the PEG tube before he "needs" it, to make sure he can keep up his nutrition. Get a team of therapists and doctors in place. And keep a good attitude and a fighting spirit!


So far as I have heard (and I'm listening hard) those are the only games in town.

[GlenBrittle]

Listen to these ladies , they kid you not.

[Blubear]

Thanks for your responses! My dad has been on a bi-pap since last summer. He was originally dx with sleep apnea, and then several months later his legs started to act up and then the ALS dx from hell. What about the normal PH and metals tests? Is that normal?
Blubear

[sadiemae]

When my husband was in hospital, they did a heavy metal test as part of tons of other tests to try to find out if his symptoms could hopefully be something other than ALS. Unfortunately they didnt find something else.

[Danijela]

Beth is absolutely right - nutrition, BiPap, multidisciplinary team, peg, attitude. I don't know much about metals, but presume the test is used to rule out other conditions. Here are a few things I don't think will stop/slow down progression:
'Eric is Winning' book
Taking out/replacing amalgam fillings
Chinese herbal tea
Extreme detox diets
Winging
Homeopathy

I am keeping my eyes on stem cell treatment, not just for ALS but a range of conditions. I do think though that we are some way away from an affordable and effective stem cell treatment.


Just my humble opinion, although all of the above can help a person feel better (develop a better attitude and a sense of 'control') and hence affect the way they deal with the disease.


All the best, Dani

[rose]

Bluebear,
I just don't understand why his doctor did not want to start him on Rilutek ASAP. From what I understood, the earlier, the better. That said, I don't take it, but it still makes no sense that he would not be offered the option.

I agree with what's been said before. One big thing that was not mentioned was avoiding/lessening stress.

.. the metal tests were for ruling out other causes, they would be expected to be normal with ALS.

[halfin]

I have only had ALS for a few months so don't have much experience to go by. The one thing I seem to have noticed is that periods of stress make me worse. I am still working and generally my job is pretty easy, but sometimes we have deadlines and I let myself get upset and worried. These have been the times when I have noticed some progression. So I'd say trying to stay calm and taking things easy may be helpful.

[lmaire]

Rilutek ASAP. The sooner the better.

[Al]

I agree with the others, Rilutek is a must. That Neuro must not be very familiar with ALS.

AL.

[BarryG]

I agree with everyone else, reduce stress, don't lose weight (get a peg tube if there are any swallowing problems) and start Rilutek as soon as there is a diagnosis.

[Blubear]

Thanks so much for the advice on the Rilutek. My parents will be home on Wednesday from their other home in Arizona, and I will print out everything that is said here. Have any of you done any clinical trial? What about those folks that are trying stem-cell stuff down in Mexico...any word from any of them..good or bad??
Hugs,
Blubear

[BethU]

There are threads on the Monterrey procedures on this forum. You can do a search and read all about it.

[sadiemae]

has anyone used the vest, from Hil-Rom? Our Dr is having one sent to us this week. Lori