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Lisa Brown replied to the topic Traveling and ALS: Share Your Challenging (and Humorous) Moments in the forum Living With ALS 3 months, 2 weeks ago
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]
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Lisa Brown and
NJGuy are now friends 3 months, 3 weeks ago
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Lisa Brown replied to the topic Peptides in the forum Research Topics 4 months, 1 week ago
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]
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Lisa Brown replied to the topic Peptides in the forum Research Topics 4 months, 2 weeks ago
Hi Bill, can you advise where to purchase Clenbuterol? Thank you.
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Lisa Brown replied to the topic Study Suggests a New Spinal Delivery Method Renders Stem Cell Therapy Safer, More Effective for ALS in the forum Flash Briefings 5 months ago
Are there any updates on this?
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Lisa Brown started the topic Right to Try Laws in the forum Diagnosis Information and General Questions 5 months, 2 weeks ago
I am sporadic and find it extremely frustrating that most trials are for less than 10% of ALS sufferers. My gene test shows some deformity in the SOD1 gene among others, however, I am refused the Tofersen EAP. I was wondering if I could throw the ‘Right to Try’ spinner in the works?
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Lisa Brown replied to the topic Newly diagnosed? What do you want to know right now? in the forum Diagnosis Information and General Questions 5 months, 2 weeks ago
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]
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Lisa Brown replied to the topic Peptides in the forum Research Topics 6 months ago
Hi, Thankyou Louis. I will start taking L-serine more seriously now!
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Lisa Brown started the topic Peptides in the forum Research Topics 6 months, 1 week ago
I too was interested in Clenbuterol, however was unable to find a doctor to prescribe so I could import. My partner and I tried everywhere, vets, body builders and put the word out everywhere we could, unsuccessfully. Which led me to find that the sports people aren’t doing ‘Clen’ rather they are using peptides. Mostly GHRP-6. – growth hormone…[Read more]
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Lisa Brown replied to the topic What's the latest news on AMX0035? in the forum Research Topics 6 months, 3 weeks ago
Me too! Dagmar – can we have a separate thread for Treg therapy please?
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Lisa Brown replied to the topic Pain in the forum Diagnosis Information and General Questions 7 months, 1 week ago
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]
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Lisa Brown started the topic ALS Awareness and Wellbeing in the forum ALS Awareness and Advocacy 9 months, 1 week ago
Hi everyone, I stumbled across a new ‘ailment medication’ platform on google called ‘Stuffthatworks’
It is a not only a place to share your medications, ask questions and get peer answers, but, the data is analysed by google in a statistical manner which I find makes it easy to see what people are doing that works.
With certain calculat…[Read more]
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Lisa Brown replied to the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 9 months, 1 week ago
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]
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Lisa Brown replied to the topic I wrote a song for ALS Awareness Month in the forum ALS Awareness Month 10 months, 1 week ago
Creighton, you absolutely nailed our ALS story. Can I please repost on my facebook page?
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Lisa Brown replied to the topic Long Journey in the forum Diagnosis Information and General Questions 10 months, 3 weeks ago
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]
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Lisa Brown replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 11 months, 1 week ago
Sorry for your loss. Please follow this link and have their names printed on flags to be flying in NYC Times Square.
Please everyone impacted by als follow that link for more publicity to help our fight.
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Lisa Brown replied to the topic CLENBUTEROL in the forum Research Topics 1 year ago
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]
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Lisa Brown replied to the topic CLENBUTEROL in the forum Research Topics 1 year ago
Thankyou.
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Lisa Brown replied to the topic CLENBUTEROL in the forum Research Topics 1 year ago
Bill, can you post a link to the site you are referring?
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Lisa Brown replied to the topic CLENBUTEROL in the forum Research Topics 1 year ago
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]
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