David Crellin
Forum Replies Created
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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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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 filling hospital food and copious cups of tea, I ended up ‘bunged’ – constipated. This was due to having no time for a long trip to the loo! Back home and back to normal now. Return to the trial in 10 days and determined to take care of gut health. My gut biome is important as is my sleep. Hospital beware!
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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. Why?????
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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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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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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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Hi Amanda, I’m fortunate in having doctors in my family, friends in pioneering research and others in senior consultant positions. But I base most of my decisions on research papers and reports in the U.S National Library of Medicine http://www.clinicaltrials.gov ; EU Clinical Trials Register http://www.clinicaltrialsregister.eu and many links to reliable external sources from this august ALS News Today.
So when my rather alternative brother-in-law suggested I take N-Acetyl-Cysteine I read peer-reviewed articles and clinical trial papers and accepted his gift of 120x60mg capsules. I still hammer him on his trust in ‘dubious’ and unreliable sources.
As two friends, professors of marine bio-chemistry and hydrology, said years ago: never trust someone giving advice outside their specialism. I see so many US ‘board registered’ medics talking absolute rubbish about something they know very little about.
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I went through the whole gamut: vitamin defficiency as I’d become vegan; nerve damage from surgery & numerous traumatic injuries; arthritis in my neck; damage caused by ‘bare-foot’ running.
What occurs to me now is that no GP or neurologist asked until I had a confirmed diagnosis if family members died from ALS or early-onset dementia. I did keep telling them that my mother died aged 49 with ALS.
Prof Dame Pamela Shaw, who now is in regular contact with me, is campaigning for genetic testing to be made available to everyone on diagnosis. This has numerous benefits, not the least of which is a greater pool available for research & clinical trials.
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Phew! Thank goodness I was double vaccinated. I had my blood pressure, temperature & blood oxygen checked every hour through last night and a chest x-ray. Blood ox back to a steady 97%, all else good too.
I could see the screen showing x-rays from my room (no details). Many showed completely blocked lungs. The hospital was our new regional emergency hub – that’s their sole purpose. It was FULL.
Ambulance got me home at 6am.
Thanks for your concern.
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My sister, a retired doctor, called. She had the same symptoms and took amoxicillin to hit the chest infection. So let’s hope.
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An ambulance is on its way to take me for chest x-ray and blood oxygen monitoring.
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I now have Covid. My son, Joe, went to an ‘outdoor’ folk festival with friends two days after his second Pfizer jab. He & others came back a week ago with cold symptoms. One tested positive for Covid, then Joe did too. Now my whole family have it.
Luckily I have a blood oximeter on my smart phone & a doctor friend, so now two blood oximeters. I’m ticking over at between 93% & 99%. Below 93% it’s blue lights time. I’m rather short of breath.
My brother-in-law, a top UK general practitioner (don’t know what the US equivalent is), tells me the symptoms are no longer mainly loss of taste, persistent new cough & high temperature. The Delta variant now has symptoms including a bad cold. Our government has failed to update the symptoms list.
Turns out the folk festival was a super-spreader event. Two bands who played now have numerous Covid cases. Their parents are equally rather unimpressed – the bands were playing in a packed marquee.
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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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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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No pain at all. Whoopee!
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I have the trial info sheet now:
Period 1 (phase 1b?)Â five lumbar punctures with one intrathecal injection over 12 weeks.
Then period 2 (phase 2a?)Â 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 of my upper arm, and last week as needles and a scalpel were used to take a skin sample from my lower arm, I think I’ll be OK.
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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 worried about intrathecal and injection.
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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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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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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 in ALS. If you need help, get in touch with me.
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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 diagnosed! But now I compare my muscle strength to rechargeable batteries: all of a sudden my energy drops. No amount of exercise can build muscle where ALS has started to take effect.
I had cramps early on, but as muscle bulk has decreased so have the cramps. I still have fasciculations all over my body though.
I conclude that this isn’t one disease: it’s a syndrome and everyone experiences it differently.
Best of luck with your neurologists. Mine is described by other medics I know as lazy. I now have one of the leading ALS consultants on my side and I’ll see her and her team this Thursday.
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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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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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Thanks, Amanda. Yes, I’m fine. It was just a bad cold – Covid after double Oxford Astra-Zeneca.