Find a cure

[DJW]

If you are reading this post then you like me are likely want to find a cure for this disease. This thread I dedicate to us, the sufferers, to collate information about self research. There is no limits and the more we post the more others get to read on this thread. Books, meditation methods, supplements.... What have you tried?

[Laticsmon]

I find on my down days my symptoms are much worse.

I try to stay positive but at times it is hard. I also have tried to stop looking at MND information before I go to bed.

[matthew55]

I've said it before but false hope is no hope. The dead cannot return to life.

[DJW]

Laticsmon I am with you and I also try not spend to long on here or every day. I find a similarity with the aboriginal practice of bone pointing, whereby healthy people have a bone pointed at them and subsequently die written a couple of weeks. If therefore a healthy person can by virtue of the power of their mind die why can not be the other way around?

[Julian50]

Today there was a Daily Mail article about a sufferer called Peter Scott-Morgan and his attempts to find a 'cure' for himself. It is definitely worth reading.
A cure doesn't need to be a total cure - it can also mean a form of symptom alleviation. What frustrates me is that the reaction that one gets when one suggests a supplement to a consultant is a blanket 'No' because it isn't proven and there is no more discussion, rather like Peter's experience. But maybe the Association could invite members to suggest supplements that work best for them and publicise the results on a supplements page so that other members could try the same and revert.
As for more real cures like MND Smart, it would be nice if the Association could keep the membership up to date with progress and sites across the country which could participate, I also don't know why there are so many initiatives going on around the world that sound promising in which the UK doesn't appear to want to play any part - e.g. Stem cell treatment.

[Mary C]

Don’t forget to sign the uk petition on line to lobby parliament to fund more research into MND.46.000 signatures so far but need to hit 100.000 before debated in Parliament.If everyone we know signed up we could hit that target.
Google UK petitions( my IT skills aren’t good so don’t know how to put the link on her)
Best wishes
Mary

[Julian50]

It's done!

[GaryM]

Today there was a Daily Mail article about a sufferer called Peter Scott-Morgan and his attempts to find a 'cure' for himself. It is definitely worth reading.
A cure doesn't need to be a total cure - it can also mean a form of symptom alleviation. What frustrates me is that the reaction that one gets when one suggests a supplement to a consultant is a blanket 'No' because it isn't proven and there is no more discussion, rather like Peter's experience. But maybe the Association could invite members to suggest supplements that work best for them and publicise the results on a supplements page so that other members could try the same and revert.
As for more real cures like MND Smart, it would be nice if the Association could keep the membership up to date with progress and sites across the country which could participate, I also don't know why there are so many initiatives going on around the world that sound promising in which the UK doesn't appear to want to play any part - e.g. Stem cell treatment.

Do you mean something like this?

https://www.alsuntangled.com/

[Julian50]

Gary, that is an interesting site that I had not come across before. I was intact thinking of initiatives that had already gained some traction not mentioned there such as Neuronata-R see: https://alsnewstoday.com/news-posts/...corestem-says/
That is a commercial Stem Cell initiative that has gained FDA backing in the USA and is also looking for partnering in Europe. I accept that there is the incentive of commercial gain on the part of Corestem but no doubt they will be investing in the research too!

[SallyAnnB]

I was also interested in Peter Scott-Morgan's attitude and plan to read his book. My experience of the MND team at my local hospital is that they're just interested in ticking boxes to say that they've informed you about various benefits or standard treatments such as Riluzole. I haven't received any personalised care and in fact my first contact, before my diagnosis was even confirmed, was a phone call from someone who announced herself as my palliative care nurse and not to bother coming in for my appointment with the consultant. I felt that they had written me off before we had even started and had to insist on meeting the consultant to get a formal diagnosis and see the team responsible for my care. Someone in my local MND group is very keen on food supplements and recommended CoQ10 so I asked about this. When I eventually got a reply, about a month later, yes, the consultant agrees that, even though any benefit is unproven, it might help or at least do no harm, providing you take 200 mg. But they don't suggest things like this unless you are informed and ask. I tried to sign up for the drug trial that they run from Edinburgh, but have heard nothing.

[Julian50]

SallyAnn, unfortunately your sad experience is not unique and the resulting frustration can drive some sufferers to treatment around the world without proper advice. But on your point of food supplements, I wonder whether this is not an opportunity for the Association to set up a supplements page, give recommended doses and to monitor and publish the results of sufferers who take them. Certainly, I would have found that very valuable and by the sounds of it, so would you!

[Gordan1111]

Good idea sallyann / julian. Worth a try anyway

[Ellie]

Welcome to the Forum, Julian.

The issue with supplements is that they are not subject to any manufacturing or quality controls, as licensed medicines are, and they can come in various different forms, all of which can result in quite a wide variance in the amount of active ingredient actually delivered from a ‘suggested dose’, not to mention that you have no guarantee of what you are buying is actually what’s in the capsule.

People’s self-reported experiences are also highly subjective and personal, and difficult to verify which, along with the above, is probably why most professional people and organisations have difficulty advising on supplements.

So yes, it’s generally up to us to do research and share our experiences. Look at ALS TDI forum, that’s where you’ll find info on supplements people are trying/discussing.

ALSUntangled, which GaryM mentioned is also a very good resource. This is from their website:

"There are many alternative and off label treatments (AOTs) advertised for ALS on the Internet. Internet information about AOTs is not always accurate. In order to help patients and families make more informed decisions about Internet AOTs, we started ALSUntangled in 2009.

ALSUntangled systematically reviews alternative and off label treatments (AOTs) to try and help patients with ALS make more informed decisions about them. The basic structure of all our reviews revolves around a “Table Of Evidence”. In this, each AOT is graded across 5 different categories: mechanistic plausibility, preclinical models, cases, trials and risks. Final grades are crowd-sourced across an international team of more than 100 clinicians and scientists from across 11 different countries."


Love Ellie.

[Julian50]

Dear Ellie,
What you say are important caveats and the ALS Untangled website is a useful source of information, but I am sure that you would also accept that a number of supplements have gone through trials, maybe not as extensively as for medicines, but trials nonetheless.
Whilst the ALS Untangled Table of Evidence may be useful, I feel that a page set up by the Association could go much further, it could add comments like "if you do take we would advise against a daily dosage in excess of ... /don't take for longer than a month without a break etc etc and also of possible side effects. In a way it is precisely because the supplement industry is unregulated and MND patients (including myself) are desperate for any help that they can get, that advice in this area would help.
As a further suggestion, the Association has a membership that would love to be heard and so why not ask every member whether they take any supplements for their MND and whether or not they feel that it helped. That information is a further element that could be included in a MND Association diet and supplements page!
Julian

[slp]

Hi Julian

I think that it would be a good idea to share with others supplements that work. Ellie suggested pineapple juice for help with phlegm and I wouldn't have known that without her sharing.

I am interested in the medication others take because we all to take different ones. I am curious of what works for others.

kind regards

Sarah x