Lisa Brown

As my journeys are at lease 4 hour trips (rare now), I quickly found out that disability toilets are:

1. Not always solely wheelchair accessible

2. Are not the nicest place to visit even when in need

3. When the legs are useless and the arms aren’t strong a carer is need to get me back off the toilet to my chair.

I am planning a short term c…[Read more]

Hi Kim,  I am slow progressing.  However speed has increased dramatically in last 3 months.  I attribute this to slackening of my strict diet.   Do not eat dairy, eggs, milk, wheat, gluten, cheese.   90% greens – preferably fresh and organic – avoid mass produced foods.  Add Leap2bfit amino complex and vitamins and minerals.

See a natur…[Read more]

Hi Bill, can you advise where to purchase Clenbuterol? Thank you.

Are there any updates on this?

I feel and live your frustration.  I monitor my own decline and have been pretty good at diagnosing timelines – from walking sticks to power chair.  I speak drunkardly when tired.  I choke occasionally.   My hands are disappearing.  I feel I have a couple more years, hoping for 10 more as the research/trials are just gaining momentum for new meds…[Read more]

Hi, Thankyou Louis.   I will start taking L-serine more seriously now!

Me too!  Dagmar – can we have a separate thread for Treg therapy please?

Hi, I started with left foot drop. Walking with cane 6 months ago now in chair unable to walk. I have stenosis in the usual places and also am a “its the stenosis” person. Now my arms have atrophy, carpel etc you all know. My best pain management has been CBD oil with low THC content. I use stronger CBD gummies if sleep is required. I take at…[Read more]

Hi,  Before I was diagnosed I had foot drop and the first AFO was a simple L shaped brace – I could walk again – this came at the right time too, just before a quick trip to Australia to meet my new in-laws.  It wasn’t long (6 months or so) before walking once more became awkward and painful on the back. Then came the plastic, custom, ‘hi…[Read more]

Creighton, you absolutely nailed our ALS story. Can I please repost on my facebook page?

John, My experience exactly mirrors yours except my progression has slowed 77% according to the ALS scale, by taking RCH4 and appropriate supplements, magnesium for cramps and fasciculations. I too have stenosis – L4/L5 and cervical.  To me the possible 3 months extra with Radicava or rizulole is not worth the side effects.  It is a patch not a r…[Read more]

Sorry for your loss. Please follow this link and have their names printed on flags to be flying in NYC Times Square.

Show ALS Can Impact Anyone at Any Age

Please everyone impacted by als follow that link for more publicity to help our fight.

Duane, I totally agree with you. I have recently been tested by a naturopath and found multiple  * points to work on – eg: high mercury, low zinc, unhealthy liver….Which is very frustrating as I had my bloods tested fully including toxins through my GP which found everything OK.

I tried ropinirole as a trial was promising, however I stopped it du…[Read more]

Thankyou.

Bill, can you post a link to the site you are referring?

This article is from 2017.  Note the side effects are due to high doses of Clenbuterole.

”The effects that clenbuterol can have on the heart and muscles will depend on how high a dose someone has been taking and for how long. The risks increase with the dose and duration.”

Even Dr Bedlack noted the dosage used in his open label trial and has…[Read more]