Alternative therapies

[momap53]

Re: Alternative therapies/medicines/supplements

Recent research is indicating that rate of progression probably is written into the genes.

 

[Fiancee]

Re: Alternative therapies/medicines/supplements

Ware trying acupunture every week, coconut oil one spoon every day, lots of supplements, mushrooms supplements, dande lion, smothees, meet grass fed beef, eggs. After a hair analyisis, he is taking minerals that he was missing. Tons of affection. Weekly meditation, and join spiritual services, that helps us a lot!

He had his three month follow up and he lost only two pounds in three months. During the year of tests, he lost 20 pounds. I feel exhausted, but optimistic.

 

[WellsRuby]

Re: Alternative therapies/medicines/supplements

Wings... I didn't respond earlier because the only alternative that we are doing are the vitamin supplements. I figured everyone is doing that. I'm fairly new to the forum but I have found friendship, support and knowledge. We try to take it one day at a time and we enjoy the little things now. I see a lot of support given to each other or maybe an answer that gets that person through their day. This forum is an answer to each in so many different ways. My husband struggles to get on our sailboat now but a few hours on the boat is the best medicine for him. Maybe you can start an alternative therapy group on here.

 

[Wings]

Re: Alternative therapies/medicines/supplements

Thanks Sally, moma, ltbeauti ... yes i totally get it re scammers... and personally I too (sally) think that .. well if it cant 'harm' you then why not give it a go... that is, with dietry supplements/diet etc... and other therapies... for example i have had a few sessions in what is called a "detox" box.. I was concerned before using it that it may make me worse because of the heat..infalmmation... etc - its like a sauna but without the steam.. and using infra-red heat lamp/bulbs... I dont 'believe nor disbelieve' the claims of it detoxing the body... what i do know (and thats why i will continue to go once a week) .. is that i drink loads of water and perspire heaps and in general "feel better - more "alive and refreshed" after ... no improvement in my actual symptoms.. but its lovely to have that feeling that i would get when i use to be able to do a good physical work out... and who knows their claims of it detoxifying the body may be doing me some good... certainly no harm. Infact i would say its a fabulous 'therapy".

Objectivity is essential - and just because someone disagrees with you does not mean its is 'negative' ... it can be a positive thing! If i bring a subject up with my Dr and he disagrees.. i ask WHY.. and i get a professionally/medical educated explanation... i embrace and respect that. Its a general undertone of negativity... i dont believe in "impossible" so long as there are no answers - surely that can indicate many possibilities.. perhaps like cancer everyone progresses differently due to dna/diet/nutrients/attitude/lifestyle -environment... i have seen the so called 'impossible" with cancer cures.. im not outrulling it with als/mnd ... and most of those cancer cures have not come from mainstream FDA approved medecine... infact too many FDA approved medications have "side affects" that cause other symptoms and could exacerbate the degeneration longer term.

I am researching the theory at the moment of baking soda (alluminium free) and organic 100% mayple syrup.... WHY? ... i say why not.. if it doesnt harm me and the theory of an alkaline ph body balance is important for general cellular body health... then why not... its a therapy that has been embraced with certain types of cancer... but i have also delved online further regarding the 'science' behind it.. and figure it may just help me... I have noticed and improvement with 'bloating' having a couple of glasses of water a day with a tsp of baking soda, and now introducing 3 times a day mayple syrup/baking soda.. who knows

I just cant help but think surely there are others out there that are tryig different "alternatives" and want to share what they are doing and if they think it makes a difference... how and why... without feeling like they are going to be put in "scammers, deluded or desparate box" .

What i find so potentially valuable about the forum is that there are people with professional expertise/knowledge/education that can give objective/scientific/medical feedback/opinions also - that needs to be embraced!

I understand the importance and need for a place where people can share and grieve and reach out.. i just think that there also needs to be a positive focus on alternative therapies.. and if people are trying different things to feel it is ok to share it witout being shot down in flames.

 

[Wings]

Re: Alternative therapies/medicines/supplements

Fiancee - TY soooo much hun - why the mushroom supplements? ... i also want to add coconut oil to my list however i need to "trial first' re me reacting to it - as i know coconuts are high in salicylates (i think mushrooms are too) - and i started to react severly to salicylates/nsaids toward the end of last year - I was also having two glasses of spirilina a day -but had to stop it - i read about a trial in the states - where it significantly slowed the progression rate of als in mice. I saved the link to my research folder so I could find and and post it here if you like....

Wells ruby.... yes how wonderful you are still getting on the sail boat - im sure the salt air will be wonderful for his lungs too Im not one to start an alternative therapy group - i dont have the knowledge - but i would love to see one started.

 

[Wings]

Re: Alternative therapies/medicines/supplements

posted twice and both gone to moderation ... maybe it was too many typos... or maybe i am on "mod alert' lololol

 

[Wings]

Re: Alternative therapies/medicines/supplements

moma i agree re the support od medical community and science behind some of the treatments that crop up... so VERY important and wonderful if we can get even more of it here.. I was seriously considering stem cell therapy options last year... and decided not to proceed due to direct advice from a scientist that had worked on an abandoned trial - bless him for taking the time... and again not long ago a new online friend confirmed again specifically other reasons not to proceed - that sort of support is priceless - and the scientific explanation makes sense!

 

[Wings]

Re: Alternative therapies/medicines/supplements

wow three posts here now all gone to mods.. what has put me on alert!:shock:

 

[Wings]

Re: Alternative therapies/medicines/supplements

please excuse my typos -i really must edit before uploading... to exhausted now to edit these posts above.

Hopefully you will be graced with less woffle and typos in teh future.

 

[pearshoot]

i posted what i thought was helping me slow progression and all it got me was a comment that i was being cruel to suggest such a thing. will never post again what i am doing. there are a few who believe they are slowing progession and several who believe there nothing you can do

 

[Wings]

so sorry to here that pearshoot - i think i have just been block with all privales gone - they did upload my posts eventually but now i cant ccess PM my friends its like i have been 'wiped'

 

[ottawa girl]

The only "alternative"therapy I have tried at the urging of a friend, is reiki. I was very skeptical - but coincidence or not - my energy level improved dramatically. I had 3 consecutive weekly sessions and during those weeks, I did not even think of napping. ( This new phenomena was especially handy during a recent trip to Vegas!). Now it's been 2 weeks without reiki - and the fatigue is back - big time.

I don't know why it or if it works, but I will be making another appointment!

 

[Wings]

Ohhhhhh ottawa girl - i am putting Reiki on my list.... and give it a go -thank you

I cant help but think - anyone going into hospital -having an opertation ...encouragement to get up on your feet and walk about.. exercise - they say speeds recovery... as hard as it can be sometimes... keeping active for as long as you can may help slow progression - who knows? I know it was REALLY emphasised to me -walking/swimming

 

[Wings]

pearshoot i would love you to post what you are doing.... if neuro's/scientist have said that smoking doubles the speed of progression with ANY Neuro disorder. Then stopping smoking must slow the progression rate for an ex-smoker. So of course its possible to slow the progression rate.

 

[ltbeauti]

ALS Untangled researches a lot of OL therapies for ALS.

Go to completed Reviews to see what they have researched thoroughly. You can also submit a therapy to be reviewed