Alternative therapies

[Wings]

I was hoping to get a good idea on the various alternative therapies any one has tried here other than doctors prescribed medications, Changes of diet? and why - i understand PEG will make a difference - but just keen if there is any positive feedback - what has and hasn't worked for you etc etc. I hope everyday that i can make some progress -improvement, and i shall not let go of that hope.

It may not be a subject of such great interest here - im hoping it is

 

[Wings]

Re: Alternative therapies/medicines/supplements

:sad: Sad that nobody wants to contribute here... the more i read with the forum posts more often than not i read stuff that is depressing. I know how nasty this disease is, but nobody should take away hope from anyone... I just wish there was a thread that offered positive alternative ideas. I believe the progression can be slowed - I was a light social smoker but stopped sometime ago (before diagnosis) as soon as i read that it is believed that the progression rate of ANY neuro disorder is twice as fast in smokers as compared with non smokers. I believe at the very least significantly slowing the progression of this disease is possible its a matter of the right combination of nutrients/attitude/lifestyle.

I am wondering if the 'positive' people diagnosed with ALS have been chased off this site because there seems to be far more response too posts that offer "grief support".

 

[Wings]

Re: Alternative therapies/medicines/supplements

Just another thought too... I realise Stephen Hawing has "familial ALS" (if thats the correct term) and still saw him as an inspiration for anyone diagnosed with a degenerative neuromuscular disease. I spent some time searching online to find out what his diet was and adjusted my diet accordingly. I understand that we don't die of ALS but the complications associated with it -mostly pneumonia?... so eliminating toxins, building the immune system up and getting timely medical/therapeutic intervention with complications to ensure longevity is essential. Understandably some people may not want the longitivity -however i am sure many of us do?

If anyone reading my posts here would prefer to Private message me with any alternative therapies -please do i am open to any options, and have the intelligence my self to make an educated informed decision as to whether it is worth my while 'giving it a go'

 

[kiwisally]

Re: Alternative therapies/medicines/supplements

I'm not so sure that people are so much negative and not willing to contribute as many just don't feel like they can say with any certainty that what they do has slowed progression in themselves enough to recommend it to others.

Scientific testing of any drug or therapy is a long extensive process and can be difficult in a disease like ALS where progression is so varied. In any one individual judging if a therapy is actually slowing progression is nigh on impossible as no one knows what their progression rate is to begin with to judge if it has slowed.

There have been many discussion in past of what people have done and do however. Maybe people can come up with some links? I'm hopeless at that job or I would myself. Calling Sadiemae!
I recall a recent discussion of coconut oil use in general diet and as a
supplement and I think quite a few use it.

I personally take Q10, vit. E, vit C in quantity. I certainly wouldn't go so far as to say this has slowed my progression but I don't think it hurts anything either. I eat a high protein and very high fat diet yet my cholesterol levels are not horrible by standard measure. Again, this is just want I do I don't think of it as therapy or a treatment.
I was not a smoker and a moderate drinker. I haven't taken up or given up either respectively. I can say that if something hurts I am much quicker to take pain medicine or medication to solve the problem with little regard to long term consequences any more. Also if some form of entertainment presents itself (food, drink, whatever) I partake with little thought of long term consequences if the short term ones are pleasant.
Hope that has helped, please don't think that people here are negative. I think by and large most are very positive giving the situations they find themselves in and I find the participation of cALS invaluable. Not to put too fine a point on it but many pALS are only here a short time, some of the long standing cALS are able to help so many more people over the years because they are willing to continue to provide help even when they could quiet easily turn their back on the ALS community and never think of them again. I think their participation is a huge gift to us all.

 

[kiwisally]

Re: Alternative therapies/medicines/supplements

Wings, I replied but got sent to mod. It will show up in a day or so.

 

[SueG]

Re: Alternative therapies/medicines/supplements

Hi Wings,
I understand your search for hope, and also believe that positivity is crucial, but the reason you find no threads on alternatives that reliably slow progression is because there unfortunately aren't any yet. It's such a frustratingly individual disease! I'd say do what seems healthy to you, congrats on stopping smoking, stay positive, keep moving if you can, pray if that works for you, and enjoy every day. Oh, and keep the weight on.
It's all a crap shoot- some progress fast and some don't. I think each of us has to find our own way to live with the disease. This forum has given me great support, and I hope it does for you.
Good luck, and keep us posted!

 

[vzandt]

Re: Alternative therapies/medicines/supplements

Maybe nobodys responding because they don't have an answer for you. I'm sorry. I haven't seen anything myself yet and the docs haven't offered up anything...or the dietary people...or the pt and ot people...or anyone....I don't think of the people on this forum as not being positive either. And grief support is important and needed to.

 

[Wings]

Re: Alternative therapies/medicines/supplements

awwwwww bless ur little cotton socks! .. Kiwisally - i just wish there was more focus on people sharing HOW they are fighting the disease - to see the lengths people like stephen hawking went too with the changes in his diet etc.... i know there is know golden rule ..BUT i do believe the progression is so different with everyone and yet the last stage of the disease is very similar... because not everyone is gluten free - or takes certain supplements, etc etc etc.. In this sense it is very similar to cancer.... people have been 'cured' of cancer through natural therapies - WHY is it unbelievable in this forum that the same can be with ALS?

 

[Wings]

Re: Alternative therapies/medicines/supplements

bless u sue, ty. Please note that i am not searching for hope .... I HAVE HOPE AND WILL NOT HAVE THAT TAKEN FROM ME - I am searching for "alternatives" tips and tricks too slow or halt or even better reverse progression - i have read blogs outside of the forum that have given tremendous "hope".... How many have gone gluten free here with there diet?... and kept away from any food/additives etc that are lknown neuro toxins?

 

[CGARS]

Re: Alternative therapies/medicines/supplements

Wings,
I, along with many, many others on the forum are very positive in various aspects and areas.

I for example, love and live life to the fullest.
I eat what I can, drink when I want and enjoy my family and friends.

I don't exactly follow the ALS dietary guidelines, I believe Beer and Bacon are two of the 4 food groups.

I didn't get back to you earlier, because it was daytime here, and I was enjoying the sunshine.

Speaking of sunshine, I'm off to enjoy the Caribbean tomorrow for a week, cause I can!
I can't talk, my arms don't work that well, and my legs are failing, but I can plunk my ass in a lounger while my wife happily gets me drinks.

So, Wings, my advice on alternative diet:
Eat what you can, for as long as you can, whenever you can!
I take a ton of vitamins, take my Rilutek(as per Doc tors orders) and I think it helps.

I hug my kids, smile alot, help where I can, and rarely feel sorry for myself.

Everyday when I wake up, I smile, because it's now one day closer to a cure.
I fully intend to keep waking up, day after day until that day ALS is cured, and nobody will ever again have to ever go though what we go through.

Don't live like your dying. Live like your living!

Cheers Bud, I hope you find what works for you.

Casey

 

[Wings]

Re: Alternative therapies/medicines/supplements

vzandt - i understand, and also know first hand with regards to grief/support. I just think there should be positive alternatives and various therapies etc shared and expressed here ... i may stay around longer if that were the case - but at the moment it is mostly a misery-go-round here.

I respect ppl like Stephen Hawking whom made significant changes in his diet .... through his own research i understand! And NOT by his neuro's advice...

 

[Wings]

Re: Alternative therapies/medicines/supplements

CGARS - Casey AWESOME! LOVE IT! U remind me of my father ... a farmer ... and I .. raised on bacon eggs etc etc! ... he was diagnosed with Cancer -given 3-5 years - my mother searched alternative therapies and came across someone who had genuinely positive results with clients whom followed her strict diet... my father tried the 'prescribed diet" for a few weeks (i think more to please mum) but i always remember him saying he would rather live enjoying the foods he loves.. than live longer eating like a rabbit LOLOLOL. He did live 10years not 3-5.

I love your attitude -inspirational. I am doing the vitamins thingy - C, B's, black strap molasses 2xdaily - i am trying to get nutrients from "superfoods" -quinoa etc. I had to stop spirilina due to a salicilate sensitivity ... but i am thinking about re-introducing into my diet. I have also started colloidial silver (two days ago!)... which is a littlle left field for me .. but who knows - it is antiviral/fungal etc so at the least it may scare off any chest infections!

I am unsure about Rilutek - i have read many positive reports and want to do more research re side effects -pros and cons.

Have you ever tried fried bacon and banana fritters/pancakes togther - truelly delicious

Enjoy the Carribean Hun... keep waking up smiling!

 

[kiwisally]

Re: Alternative therapies/medicines/supplements

Casey, have a he ll of a trip! Like I need to tell you!, lol. Enjoy.......

 

[ltbeauti]

Re: Alternative therapies/medicines/supplements

Wings. There are so many scams out there, that I shy away from most stuff that is said to reverse or halt progression.

I was a smoker and then quit and then got my diagnosis a few years later. I have had relatively slow progression, not faster.
I opted for no Rilutek b/c my progression is already slow.
My sister has ALS and has even slower progression than me. She eats all natural. No processed foods. No sugar.No chips etc.

 

[momap53]

Re: Alternative therapies/medicines/supplements

I like info from the medical community on the science behind some of the "treatments" that crop up.