David Crellin
Forum Replies Created
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Hi Goyo, through a chance listening to BBC radio 4 I emailed the person who has selected me for a clinical trial. Then I discovered she studied medicine with my sister & brother in law. She is director of the Sheffield Institute of Translational Neuroscience (SITranS) Professor Dame Pamela Shaw.
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<p style=”text-align: left;”>Goyo, I have some understanding of how you feel. My Mum died 5 months after diagnosis, but 5 years after first symptoms. I was diagnosed one year after I first noticed symptoms.</p>
My first tentative diagnosis was by a neurologist specialising in stroke. Confirmed by a consultant specialising in ALS.But I’m now seeing a professor specialising in ALS with three other professors in her clinic and over 20 doctors and consultants under her, all specialising in neuroscience and neurology. The difference is noticeable. I have been told that I’m now seeing one of the world’s best. We describe this in the UK as a postcode lottery (zip code in the US).
I hope you get good support. I have friends in Spain.
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Hi Judy, we live in Northumberland, UK. I was diagnosed 3 March 2020.
What about you?
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Hi Judy, I’ve been taking Metformin & TUDCA for about a year. Then I had to stop two weeks ago to get on a clinical trial. Now my wife & I have noticed my ALS progressing more quickly.
Metformin free on the NHS, TUDCA from Amazon.
David
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Hi Amanda, I (someone) wasn’t quick enough to get me onto cohort 1 of the Wave Life Sciences WVE-04. However cohort 2 will be starting in October and Prof Shaw at SITranS Sheffield, UK has told me it will be running there and she’ll let me know as soon as it starts. I’ve stopped Metformin & TUDCA as I need have stopped 1 month before first dose. Acceptance criteria include SVC at or above 50. Check European trials database for locations. US site does not include this data at present.
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And if you watch the YouTube clip you’ll hear me asking whether correlation equals causation.
My mother was captain of hockey & tennis and played both for the county, and was a sports teacher. She stopped strenuous exercise after my sister & I were born, aged 29. She rode a bike slowly to the shops in her 40s. Aged 45 first signs of MND, diagnosed aged 49 and died 5 months later. She was tall and thin. Her mother, also tall and thin, died aged 65 from dementia (FTD?). She helped out on her farm, but no strenuous exercise.
Whereas I was always able to just put on running shoes and run 15 to 20 miles and feel fine, get on a bike and cycle over 100 miles ditto, kayaked 60 miles one week, all without training. I also worked out in a gym to exhaustion on treadmill, rowing machine & spin bike for an hour x3 per week.
I’m 6’3″ and have never weighed more than 12.5 stones (175lbs?). I’m 63 and progressing relatively slowly
So which comes first? The cart or the horse?
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Hi Dagmar, I’ve been on two Zoom meetings with Dr Jonathan Cooper-Knock & had a meeting with Prof Dame Pamela Shaw.
Jonathan is clear in saying he cannot give specific advice to people. My 29yr old son joined one of the Zoom meetings & met Pamela Shaw. He was 2nd in a 37 mile, 5,000ft of ascent fell race (mountains in local dialect) last Saturday in a time of 6 hours, and from 21 August is running 49 (50) Scottish 3,000 ft Munros in seven days to raise funds for ALS Research. I’m climbing the extra 50th on my all-terrain mobility scooter to summit & descend with him, but not at his pace!
Jonathan’s response: ‘That’s great, Joe. Keep on running.’ Joe carries the c9rf72 gene mutation like me.
Only 17 people with c9 ALS in the sample population studied. Mmm….
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The delta variant, or the Johnson variant as we call it, is the dominant variant. I still wear a mask for visits outside the house & sometimes when therapists come to see me.
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A little request from the UK and other European countries: if you’re OK with day-time meetings then the time difference (ET+5 for me) means I don’t have to stay up too late.
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I read that the Biogen BIIB077 Tofersen trial is being extended to recruit pre-fALS candidates.
My son who is asymptomatic and carries the c9orf72 mutation is hopeful the same will happen with BIIB078 and Wave WVE-004. If they work, they may offer hope to our families.
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I am double-vaccinated with Oxford/Astra-Zeneca vaccine. Slight fever and arm ache for a day first time; just a pain from the injection second time. They had to use the same arm – hardly any muscle left on the other one.
As I’ve posted elsewhere, as a teenager I nursed my Mum through ALS. She caught ‘flu from me and died a horrible death. So you may understand my reluctance to accept anyone refusing to be vaccinated against Covid.
The risk of anyone dying from an adverse reaction to a vaccine pales into insignificance compared with their risk of contracting and dying from Covid.
But some people believe conspiracy theories, and no amount of science or objective research will change them.
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Woops! 750/100K, not per 1,000.
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Hi Amanda, I’m double-vaccinated with Oxford/Astra-Zeneca vaccine. No side effects apart from a sore arm for a couple of days.
I’ve attended four face-to-face meetings in public. At all meetings the people meeting agreed whether to wear masks – we did. One was outdoors and we removed our masks. At all meetings everyone present had been double vaccinated.
In spite of the UK government’s vacillations/U-turns on policy and regulation, and the so-called ‘Freedom Day’ yesterday 19 July, at a meeting last night all wore masks, sanitised on the way in & out and sat over 6ft apart.
So do I feel safe? Considering all the people I have met with are people I’ve known for years, are all double vaccinated and sensible, I have felt safe.
I attended my MND Clinic yesterday in Newcastle-upon-Tyne, the UK hotspot region with up to 750 cases per 1,000. We drove with air-con on, windows closed, recirculating air, and masked before we left the car. All staff in the clinic were masked, some in full PPE. I felt least safe in the car.
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My favorite easy meal from years of camping that I now enjoy and can feed myself with one-handed is: pasta puttanesca.
A tin of anchovies in oil, empty oil into pan; heat and fry a hot (you choose) chilli(s) and as many cloves of garlic as you like; add the anchovies, a sliced red pepper (capsicum), a teaspoon of capers, a squeeze of lemon, a tin of chopped tomatoes, as many good black olives as you like. Boil as much pasta as you want for each serving.
The sauce can volumes can be increased if you want to freeze some. It tastes just as good defrosted.
I’ve eaten the sauce with toast or a salad, and even on its own.
My 94yr old father gets pre-cooked frozen/chilled food deliveries. It’s cheaply sourced and not something I will eat. But I’m lucky to be able to choose with one son a former chef and my wife a good cook.
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And it turns out the trial I’m selected for is Wave Life Sciences’ WVE 004. It looks interesting & promising in pre-clinical trials, but I guess we’ve been here before.
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Back from meeting the prof. Gets better: she wants me to participate in the 1b/2a trial of Wave Life Science’s WVE 004. I need to update my SVC, but I meet all criteria. I’m apparently the first person to be referred for this trial.
All this because my wife was listening to BBC Radio4 as we lay in bed.
And more serendipity: Prof Shaw lived in the flat below my sister and was in the same year at medical school as my brother-in-law. We share many acquaintances.
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My advice for anyone interested in a clinical trial is to read the full details. These can be viewed on the US Clinical trials register and include the inclusion & exclusion criteria. Don’t just take your clinician’s word. Thanks goodness I didn’t!
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Yes indeed it is. After WW2 the Labour government delivered on its promises. The National Health Service has provided healthcare free to all in the UK ever since. We pay a percentage of income through our employers or as self- employed. This is ring-fenced for health care and funds the NHS. The Conservative governments in recent years have gradually tried to privatise elements of the service, but the NHS remains a highly rated public asset. Contrary to right leaning free market proponents, it remains an efficient and effective model. In contrast, our elderly care is now almost totally privatised and is extremely inefficient and costly. I know – I was CEO of a not-for-profit care provider and my sister a senior NHS doctor.
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Mine started with right foot drop. I have c9fALS & live in Northumberland, UK.
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Hi Victor, presisely the point I was making. But as for ‘making a big deal’, I’m aware that the ALS community mirrors the wider community. I have come across one former carer warning about the alleged harms of Covid vaccines, suggesting it triggered ALS in one person, and posting a video of a ‘board registered medic’ (an osteopath!!) stating that Covid vaccines kill people.
My sister & her husband are practising doctors in the UK & working in our Covid hotspot with 750/100k infection rate. For them vaccine denial is a major issue.
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Hi Marianne, so glad you’re both vaccinated. I, my wife, my elder son are all double-vaccinated; my younger son about to have his second.
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As my mother, who died aged 45 with ALS, used to quote: a little learning is a dangerous thing.
I guess this also applies to some of the consultants who sit on their laurels & offer inexpert diagnoses.
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Hi Amanda, another pro is that genetic screening and embryo selection can eradicate the gene from future generations.
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Hi Lori, I think your genetics doctor is 50/50 himself. Numbers can be misleading, but I understand that each child carries a 50/50 chance of inheriting the mutation, but that if they do carry it they have an 80% chance of developing ALS.
Strange that your doctor is so sure.