Forum Replies Created
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Reply To: Mechanical Exoskeletons
For 500 Euro you can now try out a HAL suit for an hour in Germany:
http://www.accessible-japan.com/walk-assist-robotics-get-approved-in-japan/Re: sativexCBD is now mainstream, you can actually buy the extract on amazon.
It is pretty mild but definitely has some effect :
http://www.amazon.co.uk/s/ref=nb_sb_ss_c_0_6?url=search-alias%3Daps&field-keywords=cbd+extract&sprefix=cbd+extract%2Caps%2C148This is not spam hopefully, but relevant to thread…
Re: WashbasinsI am currently looking at this one : http://www.akw-ltd.co.uk/product-listing/ergonomic-concave-washbasin/
Re: Having sex with E.DCialis and Sildenafil actually have beneficial effects on MD, google “Viagra Muscular Dystrophy” to read about it.
Re: Viagra / sildenafil as possible treatment for fatigueI have been taking Sildenafil for the purpose of treating fatigue and bad circulation for MD.
I showed the studies to my GP, he said I needed a letter from my specialist saying it was safe and would be effective.
I got the letter, and now I am taking it on a trial basis while I try work out the dosage.
As far as I can tell the dosage is about 10-15mg, which is hard to get from a tiny 50mg pill.The effects have been dramatic, I will feel more flexible and be in less pain and have more energy for about half a week after a dose. I have never taken any supplement that has felt this beneficial and I have taken everything.
Edit: I have LGMD2a, which does not effect the heart, so they are probably happier giving it to me than to other types.
Re: Mechanical ExoskeletonsFocal Darwing : https://www.youtube.com/watch?v=vJw8zr5s3S0
Focal Gowing : https://www.youtube.com/watch?v=tnQsZvepfM8
Some cheaper alternatives : http://www.medifab.co.nz/products/arm-supports-feedingThese arm systems are becoming sleeker every year. I imagine these will be the first step for most people as they will be a lot more affordable than whole body equivalents. Seems many of them are currently available too. Will chase up the companies to see if I can get pricing options. These are probably generally not sold to consumers though, couldn’t find a UK distributor either.
Re: Mechanical ExoskeletonsUsually I just update the initial post but I thought I would comment too so people would see it.
This is a video of the X-Ar arm, it is currently available for £2264.30, made in England, passive (non powered) arm exoskeleton.
The video actually shows it assisting somebody with MD, the results are quite remarkable:https://www.youtube.com/watch?v=ntmHK3c_tg8
Just contacted the manufacturer here in the UK, they are not licensed to sell it for medical purposes.
They recommend that I contact these folks in the USA that I have yet to hear back from:
http://www.lifebeyondbarriers.com/Re: Hydrotherapy exercises to share?Hi there, thanks for that!
It is a public pool, much cheaper.Re: Cybernetics / Mechanised Exoskeletons2014 – EU medical model of lower limb exoskeleton :
http://www.cyberdyne.jp/english/products/LowerLimb_medical.htmlRe: Computer Games Controller AdaptorRe: Vitamins, Supplements and Snake Oils.I am generally skeptical of things unless there are a few peer reviewed studies. I tried reishi and did not notice much difference. Maybe other people would have different results. Best case you can hope for is that it slows progression, I think rebuilding muscle and function is highly unlikely for anything to do.
Re: Viagra clinical trialThe trial for this should have finished last year, have the results been published?
There is a similar drug called Cialis that has been getting similar results:
http://blogs.plos.org/dnascience/2012/11/28/cialis-comes-full-circle-help-for-muscular-dystrophy/Re: Vitamins, Supplements and Snake Oils.This is my current stack that I am very happy with : Dec 2013:
Zinc 15mg
Co Enzyme Q10 300mg
Selenium 200mcg
Vitamin E 400iu
Lethicin 1200mg
Alpha Lipotic Acid 250mg
Acetyl L-Carnitine 500mg
L-Taurine 600mg
CLA (Conjugated linoleic acid) 1000mg
HMB ( Beta-Hydroxy beta-methylbutyric acid) 3000mg
EgCg (Epigallocatechin gallate) 850mg
L-Glutamine 500mg
Creatine 700mgRe: Review: Biobidet 1000What make and model was the toilet riser you mentioned? Is it a raised seat or does it mechanically elevate you?
Re: Computer Games Controller Adaptorhttp://www.engadget.com/2013/06/21/hack-a-day-modder-builds-a-custom-controller-for-disabled-gamers/
Re: What is the best equipment to get out of the bath?What do you use to get into the shower? some sort of chair or walking?
Do you sit down in the shower? if so how do you stand again?Re: Easy on shoesFlat shoes? I am using a heel riser for extra stability with the contractures.
Anything with velcro would be good for me too.
My current shoes are designed like slippers,
they were popular about six years ago and
I can not find anything similar to them that I can get on as easily.One problem I suspect these might have is that they will be heavy.
Re: Computer Games Controller AdaptorI have been looking at the Razer Hydra : https://www.youtube.com/watch?v=SKLv8tyL2vU
Although in terms of modding controllers into anything the makey makey is ace:
http://www.makeymakey.com/Re: sativexThe ingredients per dose of Sativex are 2.7 mg of THC and 2.5 mg of CBD.
Source : http://www.belowthelion.co.za/sativex-cannabis-mouth-spray/The THC is what is generally responsible for psychotic effects and is not as useful as CBD
CBD has Analgesic, Anti-bacterial, Anti-diabetic, Anti-emetic, Anti-epileptic, Anti-inflammatory,
Anti-ischemic, Anti-psychotic, Anti-spasmodic, Anxiolytic and Neuroprotective properties.
Ailment/Cannabinoid Treatment Chart:
https://legalmarijuanadispensary.com/medical-marijuana-testingCBD has been neglected in traditional breeding and THC has been selected for.
http://www.brainwaving.com/2010/01/29/its-lack-of-balance-that-makes-skunk-cannabis-do-harm/There is a new medical strain recently developed that is almost entirely CBD.
http://uk.reuters.com/article/2012/07/03/us-israel-marijuana-idUSBRE8620FU20120703I cant find the link to a recent study but the gist of it was that these things did not actually block pain like traditional painkillers. Instead it basically raised your tolerance for pain instead of numbing the pain itself. This was interesting because it could be a discovery of a whole new class of painkillers that could work alongside traditional ones and have fewer side effects.
Looking at the documentation it is a schedule 4 drug and is only accepted for the treatment of muscle spasticity in MS patients in the UK. I am not sure what the legality of it is like for other treatments but I guess it couldn’t hurt to ask your doctor.
If enough people with MD find it useful and a study is funded then maybe it would be approved for use with some of the symptoms of MD.I would be interested to hear from anyone if they have found anything that helps in any way.
Re: Cybernetics / Mechanised ExoskeletonsHal suit ready for worldwide rollout at $2000 a year!
http://www.businessinsider.com/japanese-robot-suit-approved-for-worldwide-rollout-2013-2
