@crell
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David Crellin replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 2 months ago
Don’t give ideas. I have a 500 watt bass system from when I played fretless bass, and a 1,000 watt PA rig,90 watt accoustic guitar combo, wireless mics. Now after playing guitar from age 6 I can’t sing and cannot play instruments. Voice banking in January.
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David Crellin replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis Information and General Questions 1 year, 4 months ago
And as part of the Focus C9 study I’m a sentinel participant MRI scans of the brain are a regular feature.
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David Crellin replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis Information and General Questions 1 year, 4 months ago
Hi Mark, I began participating in an MRI study of ALS at Newcastle-upon-Tyne, UK just over six months ago. Three hours of intensive scanning every six months. The researcher is applying for grants to extend the study and I have suggested my 29yr old son joins the study. He carries the c9 mutation I have.
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David Crellin replied to the topic Share your tips for dealing with embarassing "bathroom" topics in the forum Living With ALS 1 year, 5 months ago
I have long wondered whether semantics is relevant to this topic. Here in the UK the bathroom is where we go for a bath. We go to the toilet or loo to ‘relieve’ ourselves.
However, the debate about how to avoid constipation is valid. Having spent three days as a sentinel on a clinical trial being checked every four hours at least, eating very…[Read more]
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David Crellin replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 5 months ago
No pain at all. Whoopee!
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David Crellin replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 5 months ago
I wish. I have to ‘move around and be physically active by standing and walking for 30 minutes.’ That will be a challenge!
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David Crellin replied to the topic Phases of Clinical Research – ALS treatments in the forum Research Topics 1 year, 5 months ago
Interestingly the trial I’m about to start is a Phase 1b/2a first-in-human trial. Progress & dosing regimen in Phase 2b is dependent on safety & efficacy results from Phase 1b. Some participants will skip Phase 1b.
For better or worse, as the first participant I’m a sentinel. I have more intensive monitoring, but also a greater chance of placebo.…[Read more]
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David Crellin's profile was updated 1 year, 5 months ago
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David Crellin replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 5 months ago
I have the trial info sheet now:
Period 1 (phase 1b?) five lumbar punctures with one intrathecal injection over 12 weeks.
Then period 2 (phase 2a?) potentially up to 4 intrathecal injections with an additional monitoring lumbar puncture over 24 weeks.
I hope it’s as painless as you suggest. Having watched as a malignant melanoma was cut out o…[Read more]
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David Crellin replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 5 months ago
Spot on. When my feet (in socks) touch the ground my legs jump higher than I can raise them. And if I recount any item with a hint of emotional content I start weeping.
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David Crellin replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 5 months ago
You wait for a bus for hours, then two come along.
I start dosing in the Wave WVE-004 trial next Monday. And then read in ALS News Today about another genetic therapy targetting c9orf72 ALS being developed at SITtraN where I will be next week.
So I may well meet Guillaume Hautbergue, PhD, and find out more.
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David Crellin replied to the topic Is this more progression? in the forum Diagnosis Information and General Questions 1 year, 5 months ago
Hi Lisa, so much in common. It took a year for me to receive a confirmed diagnosis after a probable diagnosis two months earlier. And that’s from a neurologist in Newcastle upon Tyne, UK previously named Neurocastle when a former prof was in charge. We have one of the top genetics centre in the UK too.
If I were you I’d try to find a specialist…[Read more]
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David Crellin replied to the topic Is this more progression? in the forum Diagnosis Information and General Questions 1 year, 5 months ago
Hi Lisa, I feel for you. Thankfully my family is fit and healthy.
I was diagnosed March 2020, just as Covid changed our lives a bit. From early on I had to rethink my approach to exercise. I’ve spent a very active life and the ‘No pain=no gain’ mantra I’d applied throughout my life failed me. I still managed to walk 19 miles the week I was…[Read more]
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David Crellin replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 5 months ago
Bon jour Jean-Pierre. J’etudiais le francais et l’allelmand il y a 40 ans a l’universite. Et a 63 ans ca marche encore!
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David Crellin replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 5 months ago
Glucklicherweise wohne ich in England und die Professor Pamela Shaw studierte mit meiner Schwester. Mein Doktor wusste nichts von diesem WVE-004 Prozess. Ich selbst habe eine E-mail nach Prof Shaw gesendet, nachdem ich sie an einer Radiosendung gehort.
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David Crellin replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 5 months ago
Thanks so much. I have a phone conversation booked with one of the nurses tomorrow to discuss the process and ask any questions.
My wife had a spinal block when our first son was born, and she shares your experience of the absence of pain. I had a malignant melanoma removed from my arm under local anesthetic while I watched! So I’m not over…[Read more]
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Jörg Dimmeler and
David Crellin are now friends 1 year, 5 months ago
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David Crellin replied to the topic Research and Alternative Treatments in the forum Living With ALS 1 year, 5 months ago
Thanks, Amanda. Yes, I’m fine. It was just a bad cold – Covid after double Oxford Astra-Zeneca.
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David Crellin replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 5 months ago
Good evening (UK time 17:36), I’m so happy to have received emails this week telling me I’m selected for the Wave FOCUS C-9 WVE-004 clinical trial and start 11 Oct with the first …… intrathecal injection. So Amanda, we can compare our experience of having needles stuck in our spines! What joy.
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David Crellin replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 5 months ago
My screening visit for the Wave FOCUS C-9 WVE-004 trial is sheduled for 30 Sep and first dose 11 Oct.
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