Hello there folks… thanks for reading this. It’s my first time taking part in this forum and hope you can help.
My 23yo son was diagnosed with MS a couple of years ago and has recently started on a treatment plan.
We’re under Salford Royal Hospital in Manchester but (for me) they don’t seem very proactive in advising patients of how to manage the symptoms of MS.
To place some context, Jack is a lovely lad but very fretful and anxious. He’s been some anti-depressants (sertraline) for a few weeks and it’s helped enormously with his OCD tenancies. He worries about everything and it doesn’t help that I’ve had a decade of medical problems (heart and kidney transplants) and his brother’s ASD.
Recently, he’s been feeling really down with regard to his constant lethergy and people telling him it’ll get better. He’s far from stupid and knows it’s only goingbto get worse which only fuels his frustration and feelings of helplessness.
Does anyone have any advice of how we can boost his mood and help with the lethargy? Apparently foods high in antioxidants can help. Has anybody tried this with posive/negative results?
Welcome to the forum, and well done for wanting to support your son. The first thing to say is that getting a diagnosis like this is a massive thing to deal with. For starters there’s all the new physical symptoms to have to deal with. That alone can take an emotional toll. But then there’s the great unknown of what the future will hold. MS is so variable, we might not even know what tomorrow will hold, let alone the future that awaits us. Us humans often struggle to cope with uncertainty, and our brains can then project all kinds of negative things into the future. Again, that can take an emotional toll. And it can be common for people to go through the classic stages of grief when dealing with the diagnosis - denial, anger, depression, then finally acceptance.
And when our emotions have all the stuff landing on our laps, it can have a knock-on effect on our energy levels. Fatigue is a common physical symptom of MS, but I wouldn’t be surprised if part of the lethargy is from all the emotional stuff. Plus, low mood is more common at this time of year as the days shorten.
It’s important to say that this diagnosis does not mean life is over. It’s changed course, but it’s not over. Since I was diagnosed over 19 years ago, I got married, did a tandem skydive, continued to work, have studied at bible college and learnt to fly thanks to a scholarship with the Flying Scholarships for Disabled People charity. This has all been as a wheelchair user.
It’s important to choose things that bring life and energy. Time in nature (I like to just spot shapes in clouds). Watching comedies (laughter is good for the soul). Doing something creative. Sticking googly eyes on post boxes. Joy can be found.
I just wanted support Dan’s comment. Fatigue and lethargy are certainly common MS experiences, but an MS diagnosis is not the end of the world by any means. For myself, obviously I’d rather not have received the diagnosis, but it is what it is and my message would be to live the best life you can given your new circumstances, and don’t try fighting or denying it!
Foods high in antioxidants are generally very good healthy foods, so definitely worth pursuing.
I suffer from SAD (seasonally affective disorder). Do try to encourage him outside into the sun and daylight, as that helps improve mood, and health. There is also a great deal of very recent research on the benefits of red light therapy - red light and in particular, near-infrared. Due to the way we live today, we are getting a fraction of the near-infrared that people used to. We spend a lot of time inside, our windows are now low-e glass which stops it entering. We no longer have open fires, and our low energy bulbs don’t emit it, unlike the old incandescent and halogen.
Near-infrared helps in the normal repair of brain cells and also is essential for the working of the mitochondria in our cells - the power houses that give us energy. I’ve just bought a red-light NIR light therapy device, based on loads of research out there that shows it helps for so many conditions including neurological disease.
Medcram did an excellent video on NIR. It is a long watch but well worth it. He goes into the detailed science, but in a very easy to understand way. I’ve jumped to the bit where he starts talking about how light reacts with body especially the mitochondria (the earlier section was the circadian rhythm).
Thanks Dan, some good advice there captain. It’s so gratifying to hear that after 10years you’re still positive.
I’ll discuss this with Jack and see what he thinks.
Thanks Claire,
I think he’s accepted it, he gets frustrated with the constant tiredness though. He’s only 23 but doesn’t have the energy to go out and do what 23 year-olds do. He worries about work too. He’s finished his training as an architect but worries he won’t have the concentration to compete with the other graduates joining the workforce.
Thank you Ziola! This is excellent and something I can actually do to help him, I’m something of a science geek and find this kind of thing fascinating.
If you’ve not yet come across all the great info from Prof Gavin Giovannoni, then check out his blog. He encourages a much more holistic approach than many neurologists, and is very keen to help pwMS who like to be proactive, so that may be particularly of interest to your son.
20 years! I should say I haven’t always been positive. There has been, and still can be, some incredibly tough and dark times. I’m a christian though, and without a doubt the greatest thing (or rather, person) that has helped me to endure and grow is God and my relationship with Him. He has done so much inner healing in me, and He’s the only reason I have hope for the future
Dan
Wow, 20 years and still going strong. So happy you have your faith to keep you strong.
We’re not religious or spitual but find strength from within. Best of luck to you Dan and thanks again for the advice sir .
It’s probably worth saying that it’s not so much my faith that keeps me strong, but rather the person who I have faith in who gives me the strength I need
Dan
Have you come across the Aaron Boster Youtube channel? He’s an MS specialist neurologist (in US) who is very keen on sharing information on MS so that those with it can be very pro-active in their management of it. He takes a holistic approach as well as being very knowledgeable about the latest developments in treatments for MS.
He’s just done two recent videos on fatigue in MS. He’s always very positive and I think his approach works particularly well with younger people with MS.
Here’s one of them - it will take you to his channel where you can access all the others.
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