David Crellin
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I was diagnosed 3/3/20 with C9ALS. I have friends in genetic therapy research,several are medical consultants, and I have siblings in medicine. So lots of contacts to come to my aid. I gave up trying to persuade my consultant to prescribe the treatments I had researched: Metformin, TUDCA, Ibudilast. He admitted they probably had more evidence than Riluzole, but he wouldn’t prescribe even though the cost of Metformin and TUDCA is negligible.
So, TUDCA available on Amazon -kershing £££- and I put the word out. A mysterious package from Singapore arrived with 360 Metformin tablets. Who sent it? No idea. But a mate who is a thoracic consultant and medical director now knows I want Ibudilast/MN166. I await developments.
It seems it’s both what one knows and who one knows that counts. -
We have rather less land, but when I was diagnosed I had already let half of it revert to nature – ie rewilded. I then built raised beds with paths wide enough to take a wheelchair and we now have a bumper harvest that I will be able to access when my mobility deteriorates.
My wife’s parents have 6 acres which they mow. I keep asking them why. My 93 yr old dad still rides his mower. Why? Just let it go, make accessible routes through it, welcome in nature.
I guess if your income comes from the land, it may be difficult. But so many of us think we’re meant to tidy everything. ALS has given me cause to question many aspects of the way we live. Perhaps we need to live more lightly on the earth.
David
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The weekend after my diagnosis (3 March) was my wife’s 60th. So I joined her and numerous friends in a walking holiday. I only managed 19 miles,( having run 15 miles & walked 12 miles a day for a week supporting her 50th birthday week!). Then drove 7 hours to our cottage in rural Wales where family live and ate with them and local friends there. Then lockdown was announced, drove home, drove to far north of Scotland to collect my son, back home. Since then I’ve been fairly isolated, but formed a ‘bubble’ with my 93 yr old dad and have traveled to stay with him a few times.
I wear a mask, carry hand sanitizer, travel in my campervan/motorhome with shower, washroom (toilet as we in UK call it) kitchen and provisions on board and a 1000 mile fuel tank. So I travel totally isolated from Covid19.
I chair a parish (community) council and we meet by Zoom.
So it can be done.
And I was surprised that my consultant continued face to face meetings with rather lax attention to mask wearing.
Take care, and enjoy life as much as you can while you can. I managed to walk down & up 121 steps to my favourite beach last week, swam, cycled 8 miles – and was exhausted. But it was worth every step.
David
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Hi,I do indeed keep up with clinical research – I only wish my consultant was as informed! It helps to have two friends of my sons working in gene therapy research and one other just graduated from Oxford with a PhD in Neuroscience.
In addition to biomarkers and genetic links, the research into benefits of already approved drugs looks interesting. I have C9fALS, so trials into Metformin and C9ALS, as well as MN-166, AMX0035 interest me.I note that Ionis/Biogen, Wave Life Sciences and UniQure are all developing genetic therapies using viral carriers. The hope is that once the safety of the carrier mechanism is approved, approval of variations of the genetic therapy should be expedited. But I frequently ask myself why clinical trials need to take so long. I worked in business improvement, working with staff at all levels to develop tools for their use in making processes work, cutting out handovers, log jams. I wonder whether this continuous improvement philosophy is applied in trials. I know it is in pharmas, because I’ve seen it in practice in GSK. I’m free if anyone is interested, and can still travel!
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Hi, I too was prescribed with ‘the only treatment authorised in the UK’ Riluzole & told it might give me 3 more months. Today I have written a paper for my consultant asking him to prescribe:
Metformin SR – trials targeting the C9fALS I have beginning in Florida. The drug has been used for decades to treat Type 2 diabetes and infertility (neither of which affect me!) Cheaper by far than Riluzole.
Ibudilast / MN-166 prescribed in Japan for bronchial asthma and in trials for people with less than 600 days since first weakness. Again, cheaper than Riluzole.
AMX0035 approved with orphan status by FDA, a compound of TUDCA (search Amazon!) and sodium phenylbutyrate.
I am lucky to have a group of friends who work in rather senior roles in genetic research, so I pity my consultant!
Best of luck, David