diagnosed 3 weeks ago

[Hank]

i have people suggesting alternative treatments. suggestions include seeing a chiropractor other suggestions include investigating essential oils, coconut oil. cannabis oil.

opinions??

 

[Buckhorn]

Hi Hank. Your subject line says diagnosed 3 weeks ago. May we assume you yourself were diagnosed (hopefully by a MND specialist) as having ALS? There are alternative treatments to treat symptomology only. Riluzole is the only mainstream, medically approved treatment. Some university medical centers who are in the forefront of ALS research are employing alternative treatments for symptomatic relief and to delay progression of ALS. IMO, chiropractic intervention is a waste of your time and resources in the treatment of ALS. There are two main "schools of thought" in chiropractic medicine. In one, they believe that they can affect a change in systemic disease processes (like diabetes, rheumatoid arthrits, and even cancer) simply by manipulation of the spine. WOW!? No way / no how.

 

[lgelb]

The oils each have potential uses. Search on them using the search link in the menu bar. Be aware that these uses are symptomatic rather than "curing" the disease. Other approaches to living as well and as long as you can include a focus on nutrition, sleep, hydration, exercise (from active to passive range of motion as you progress), active BiPAP management, massage, getting outside and finding ways to do activities/be with people that you enjoy.

Best,
Laurie

 

[affected]

Alternative therapies can help manage symptoms, but are not really treatments and certainly not cures, but you probably already know that.

Coconut oil is used by lots of PALS both for massage and for adding calories to meals, and seems to be of benefit.

Cannabis oil is used by lots of our PALS, you can search in the google bar above to see past threads that may give you lots of tips, you can also try searching on MM for this.
A lot of PALS say it gives great temporary relief of symptoms. I know my Chris certainly 'felt' better for a few hours at time, but he was smoking it which is certainly not the same and not optimal but it was all that was available to us.

I agree with others that I would beware chiropractors. I would also really beware anyone claiming anything that sounds too good to be true, it will be! We wouldn't be here if it were otherwise...

 

[Atsugi]

Chiropractor? My God! My landlord/plumber was a chiropractic "doctor" on Tuesdays and Thursdays.

You asked for opinions. Here is mine.

First, the mainstream medics: I discovered that few medical doctors really understood ALS very well. I found that none of the nurses we dealt with had any clue how to care for a paralyzed person. Yet it seems that everybody in the medical community is required to pretend they know everything, even when they don't.

Before allowing someone to touch my PALS body, I ensured they had experience working with paralysis.

As for alternative practitioners, my opinion is: don't. ALS is a disease that destroys certain nerves in the brain and brain stem. Super-educated researchers with huge amounts of money in well-equipped laboratories around the world have not got it figured out yet. Alternative medicine, like homeopathy, naturopathy, chiropractic, energy medicine, various forms of acupuncture, traditional Chinese medicine, Ayurvedic medicine, Sekkotsu, and Christian faith healing don't stand a chance. The US government has spent billions of dollars trying to ascertain the scientific value of these practices in general, and determined that they're no better than placebo.

Others will disagree. My wife, my PALS, was a medical doctor for 20 years, so it's easy to call me biased.

https://en.wikipedia.org/wiki/Faith_healing

 

[Nuts]

OK, I'm going to take a different stand on chiropractic care. As with all medical practitioners, if you get a good chiropractor he or she can do a LOT to help. I've been under chiropractic care on and off since I was a small child, and I feel best and have fewer problems when I get a periodic adjustment. That having been said, unless the Chiropractor knows more about ALS than most medical people we run into, be very cautious. I'd say that there may be benefit early in progression, but even the man I travel over two hours each way to see has said that there's no point in taking my husband to him at this point.

If you are looking for ways to slow progression and make yourself more comfortable, massage and essential oils will probably do more for you. My husband has a weekly massage in addition to physical therapy, and we have found that Frankinsense (so?) helps calm and relax him, especially at night.

Becky

 

[KimT]

Every person is different. I know some people in my local ALS group who use marijuana and it dulls pain and spasms. Massage has helped many but be very cautious. I think a deep tissue massage made my back spasms worse because it was done with too much pressure. Just my opinion. My friend massages my legs and feet several times a week and that helps relax me a great deal. It also seems to cut down the non-stop fasciculations in my feet, legs, and glutes for a few hours.

Soaking in a tub of epsom salts might help relax you. Even soaking your feet.

I'm all for what relieves symptoms.

I also strongly believe in the power of prayer but would NEVER pay to be prayed for.

I had a terrible experience with a chiropractor after my car accident in 2000. It permanently injured my neck, possibly causing a herniated disc. I see no valid use of chiropractic in ALS. None.

Focus on things that preserve range of motion, relax, make you feel better, and relieve stress.

 

[swalker]

I suspect that we have all had friends, acquaintances, and strangers offer solicited and unsolicited advice on how we can get better. In my case, this was especially true in the first few months after diagnosis.

Here is my opinion.

Some alternative treatments might provide some relief to some symptoms.

Some alternative treatments will cause harm and potentially accelerate your decline. Ask here before undertaking any particular alternative regimen.

Most alternative treatments will consume resources (time, money, and energy) that could be better spent elsewhere.

No treatment (neither mainstream nor alternative) will provide a cure.

That last statement was hard for me to accept in the beginning. Once I accepted it, I stopped googling for that stuff and directed my attention to getting the absolute most out of each day I might have left.

Steve

 

[Hank]

Thanks for your responses I think the best advice is to get weekly massages, exercise , reduce stress . Which I I am retiring . Going to spend a lot of time at the beach this summer. I am pretty early in my ALS. I noticed symptoms August 2015. My main problem is my left hand. Weak along with atrophy. I have a positive attitude. I feel this will be a slow progression.