I found Christmas really difficult this year. Social media has a lot to answer for. My newsfeeds were flooded with images of everyone’s perfect Christmas. Pregnancy announcements, engagements, a new puppy. People my age making christmas special for their kids. Family photos in matching pyjamas. Friends out drinking ‘merrily’.
I’ve been stuck in the same chair all winter, trapped in my body. I’m reminded that I may never get to experience any of those things. Everyone else’s life continues while mine is on hold or ending.
I look on while Mum unwraps my gifts for me. I can’t interact with the dogs and their new toys. It’s a really strange experience.
I received the results of my genetic test. I was only tested for two known faulty genes and I didn’t have either one. I’m told this means that I’m not eligible for the current treatment (Toferson) and there is no genetic explanation for my MND.
The news hit me hard. I knew it was highly unlikely that I would be in the 2% to be eligible for this new treatment. But in the time that I was waiting for the results, there was still hope and now that’s gone.
I’m left wondering if this means that my MND was triggered by something environmental or a lifestyle choice. Was I at a crossroads at some point and did I unknowingly make a choice that led me here? We might never know.
I recently listened to a podcast on Pam Shaw who has pioneered the treatment Torferson for the 2% of people carrying the SOD1 gene. She suggested that MND was common in athletes but for every active person I have met with MND there are some who have led a sedentary lifestyle.
The research seems very promising. People are getting out of their wheelchairs and are walking. I also liked that any clinical trials she set up that she didn’t leave patients on a placebo for more than 6 months before giving them the drug. That shows me that she really gets how time sensitive the research is. Have a listen to the podcast.
https://www.bbc.co.uk/programmes/m001h495
I would never have considered myself an “athlete” but I spent an hour or so 4-5 days a week going to the gym. I did a lot of walking, drank water and cooked all my own meals. I enjoyed my food and I just wanted to eat and still be healthy and in good shape. There were plenty of people taking the gym much more seriously than me. I wonder if I would be in this situation if I smoked like a chimney and drank like a fish?!
I’ve been on the MND Smart trial for over 2 years. When it was first announced it was this amazing, first of its kind trial that was rolled out across the country. For a while when I asked about the progress of trial I would get a vague politician style answer. No one seemed to want to commit themselves to answer whether this is actually benefitting anyone with MND. I personally don’t feel that I’m benefiting from it and I haven’t heard from anyone else with MND that it’s benefiting them. I have always wondered if I have the placebo. Have I been taking a placebo for over 2 years?!
They have since published that there has been a “trend” towards functional improvement with Memantine (a drug for Alzheimer’s). It’s shown that it can slow down the loss of motor neuron’s.
If that’s the case then why are we not getting prescribed this medication? It’s not a new drug, it’s already on the market. I thought that was the whole point of the trial?
https://mnd-smart.org/about/trial-drugs
I don’t feel repurposing existing drugs will lead to a cure. I can understand why they are doing it but I think it, if anything will only buy us more time.
Remember that these are just my thoughts and opinions but I don’t think a cure for MND will come from antidepressants or treatments for HIV for example. I think it will be much more complex, something on a cellular level where they take cells or genes and recode them in some way and send them back into the body to make their repairs to the damaged neuron’s. Again, that’s just my theory.
That’s why I feel this recent announcement for two new research studies sounds much more promising but it could take years before they see results.
https://www.mndassociation.org/one-million-pounds-awarded-to-drive-promising-mnd-research/
I wish there was something else that I could be trying in the meantime. I’m desperate to try anything but at the moment there are no other options. Time is running out.
I fantasise about getting my life back all the time. I hope that one day that dream will become reality. Not just for me but for everyone living with MND.
I will leave you to look through these photos taken by photographer Richard Cannon showing the various different people living with MND and their loved ones who care for them. See if you can spot anyone you know! *wink*
Jo’s Journey with MND 