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I hope you are keeping well. Just read the MS Selfie about games, very interesting. I too am sorry the PASAT test has been stopped

I do Sudoku from the Times. Only on mild level and I admit I make mistakes and can check for errors. If I get stuck then I will cheat. I enjoy Tuesday, Thursday and Friday when the puzzle I like is published. I believe it helps to keep my brain active but I must stop cheating. Each game takes me about 30 - 45 minutes. I must also restart playing backgammon on my laptop but need to find a new version.

I also get outdoors to do the shopping and cook the evening meal. Cooking involves lots of motor and memory skills such as have I salted the water, reading the recipe, chopping the vegetables etc and I enjoy it. When our kitchen is redone I'm going to restart cake baking. It is another activity that, I think, requires many motor and memory skills.

My wife and I play a board game each week. Our skill levels are compatible, once again requires concentration and motor skills. We both Carcasonne and Ticket to Ride and also play a few others. I also want to start playing bridge again, had to stop in the pandemic. I'm not very good but once again you need memory, concentration and social skills. It is competitive but a safe space at the same time.

Just a few ideas that might help other people. I must get out for a walk using my walker, its very important to get the exercise and fresh air. No shopping for me today.

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founding

Yes… Sudoku… some days fiendish, some days only mild…

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Oct 21Liked by Gavin Giovannoni

Surely what MSers really need are treatments which effectively address SAW, and minimise the CNS tissue damage and unrelenting disability progression. Rather than creating games, why not put effort into fast tracking tolebrutinib? We keep being told that time is brain and that SAW / PIRA are the main causes of CNS tissue destruction, but I’d hazard a guess that tolebrutinib won’t be available from another 2 years (with criteria which will limit access). As we near 2025, I do wonder what MS researchers have been up to for the last 50 years given that for the vast majority of MSers disability progression continues regardless of the treatment chosen. My friends recently diagnosed with cancer (breast, prostate) have a completely different treatment experience - no Lego or designing games, and no self- management. The treatment target is to get them cancer free and back to good health. Neurology patients can only dream of this.

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I have RRMS and have had breast cancer, and yes, initially to get you cancer-free is the aim, because if not treated quickly cancer kills. But long term there is a lot of self management for anyone who wants to stay cancer-free, to do with diet, exercise, mental health etc. For most people it is a life changing moment. I think expecting scientists to come up with a magic pill to make us all better is unrealistic, as it is with cancer. I still live in fear of recurrence. And the treatment I received to prevent this (tamoxifen) was then the likely cause of precancerous cells in my uterus, which were luckily discovered before developing into something worse, but resulted in my having total hysterectomy.

Working with what we have to maximise our life experiences is essential to many of us with MS. That's why we are here. I applaud GG for all his efforts to help us with this.

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Victoria, thanks for your response. The contrast with my friend with breast cancer was that once the issue was picked up she was seen quickly and followed a set process. The consultant recommended surgery, followed by chemotherapy and then a ‘maintenance’ therapy for a year. My friend trusted the consultant and has recently finished the maintenance therapy. She has had plenty of monitoring and calls from the nurse. For RRMS there are 20+ treatments offered and the patient is expected to choose. The consultant could push you to a low efficacy therapy, or a high efficacy therapy (depending on their mindset). I find the whole situation bizarre. I also have a friend with MS (had it 25 years) who sits in her electric wheelchair all day long which she operates with the two fingers which still works - she’s 56. I’m not after a magic pill, but there’s many others like her and a bit of tai chi or a daily dose of wordle isn’t going to make a jot of difference to her horrific situation. We’ve been waiting for neuroprotective therapies, remyelination therapies and neuro restorative therapies for too long. My aunt died of MS in her early 50s in the mid 1990s. I think I have a right to question why 30 years later we still wait treatments which stop the underlying disease progression (not just relapses). Best wishes.

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I do understand your frustration, and it was stark the difference between the two diagnoses. I ended up changing hospitals as my neuro consultant at local hospital offered me nothing, so I now go out of area, which has its own complications. I think the difference with cancer is that there has been a long campaign by charities etc to improve services, and there are over 150,000 deaths in UK every year, so almost everyone is affected in some way, which makes it easy to campaign, fundraise, change government policy. Whereas lots of people don't have a clue what MS is, so many people think it's the same as ME, or get mixed up with other neurological diseases. My sister-in-law was diagnosed with MS shortly after me, but then told she'd been misdiagnosed and it was actually FND, which is even more poorly understood. The MS charities and other advocates are now taking steps to push it at a government level. I actually sent an email to my MP this morning through MS society. We possibly need a single charity focussing on all neurological research, Alzheimers, Parkinsons, MS, FND, an equivalent of Cancer Research. Then the general public may begin to realise that neurological illness could easily happen to them and their families. What MS researchers need is money. And better training for neurologists so they stay up to date with the rapid changes in this field.

I am sorry to hear about your aunt. Best wishes.

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Oct 21Liked by Gavin Giovannoni

My left hand, which is my dominant is quite weak and so is control from middle finger to 5 th. I decided I’d like to learn the piano. I have very long fingers and have been asked countless times do I play piano. Cost of music lessons were out of the equation as a child, my music lessons consisted of anxiety around missing the flying blackboard rubbers. (1970s. Secondary school)

I’ve found a very good teacher, she thought I was right hand dominant, this is because I’ve learnt to rely on it more over the past decade. With my left hand I don’t use fingers 4 and 5 and do a twist with my thumb for 4 and a cross over with finger 3. I get frustrated, I’m on children’s beginners, however we’ve ordered a weighted 88 key portable piano. 20- 30 minutes a day. I doubt I’ll ever be Elton John, but I find it totally engrossing.

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founding

I think this is great! Be Hugh Laurie!! 😊

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Oct 21Liked by Gavin Giovannoni

A game app would be great.

The MS Register has a cognitive test now. I did it earlier this year and that had some fun bits. I think a variety of games would be good. having 'levels' or areas with all sorts of different tests you pass before progressing to harder ones.

Cognitive function is something I really want to keep a track of. I am a scientist and am already conscious that I cannot focus or retain information like I used to. I can still do my job but am having to think about how to manage it if it gets worse. But the change is so subtle it is only me that notices so far.

I did jigsaw puzzles to help restore my hand function following a big relapse. Similar idea to the lego I guess!

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Oct 21Liked by Gavin Giovannoni

Dr. G, While the patients await the game, may I suggest humanbenchmark.com ? It's got a lot of memory, reaction time, and coordination games on there. It allows you to track your progress and compares you to the general population.

We used to use this website for concussion management back in high school sports.

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Such a grand idea. I have formal training in LEGO Serious Play, which is used in funded NIHR research as a creative method of learning, knowledge sharing and the development of new ideas. Lego works on many levels and is an accessible inclusive tools, which can be used even when the fingers are not listening! On a personal level there is nothing more wonderful than sharing Lego with grandchildren; it is a real boost. I'm really interested in being involved in any bids and using my knowledge. Thanks, Fiona

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Oct 21Liked by Gavin Giovannoni

Yes, please, develop a game with CREATE-MS. Cognitive are my most troublesome MS symptoms. I do the NYT games daily. I will ponder funding sources and share any. Thanks, Prof. G!

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Oct 21Liked by Gavin Giovannoni

thx 🙃🙃🙃🤗🤗🤗😘😘😘😍😍😍🥰🥰🥰

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Oct 22Liked by Gavin Giovannoni

My neuro estimates that I've lost about 10% of my brain volume over the last 15 years that I've been labelled SPMS (fwiw). But, he says, it's more white than grey matter therefore not so cognitively important -- or do I have that the wrong way round?

I am noticing cognitive defects, usually related to short-term memory. It affects my social confidence. I'm a writer and fear that it will make my next book difficult or impossible. I do Wordle and Waffle every day (and I have to admit I do OK on both), and yes, I share Wordle results with a couple of friends and use it as an excuse to stay in touch.

I would be happy to use an app, especially one geared specifically to pwMS in situations like mine.

I also use the 9HPT a few times a week. I have no idea if it's helping, but it can't hurt, can it.

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White matter is mostly myelin (lipid layers), and gray matter is neurons and dendrites in the brain. A little confusing, but white matter is also axons in the brain and spine.

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Thanks Christopher. So it sounds like I was right, it's white matter that I've lost. I'd rather have the full complement, but at least I've retained the grey stuff. Mostly.

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Oct 21Liked by Gavin Giovannoni

I do the NYTimes Connections, Wordle, and Strands puzzles in the AM and the Vox crossword in the PM. I share Connections results with BFF.

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Oct 21Liked by Gavin Giovannoni

I think a better test is necessary. The cognition test available to me did not seem thorough. There is not brain measurement software available through my care provider. My neurologist has told me that he does not see evidence of smoldering on my latest MRI. He suggested MSDA lab work through Octave: https://www.octavebio.com/patients/

I am in the process of making an appointment for this lab. I don’t think we have enough tools to measure cognition. I do play Wordle everyday!

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founding

I’m guessing this testing is US and not UK?

I really want to find someone to measure neurofilament light chain and give me some feedback on what is happening NOW…

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Hi Claire

I don’t know if it is only available in the US. Maybe the link above would help.

I considered the neurofilament light chain, but I didn’t want to pay for it several times in order to get an idea of how my disease was progressing. It’s like 1K a pop here and the insurance is not as sure to pay for it. After talking to Octave about this other test, they are contracted with a few insurance companies and payment is a little more reliable. The test before insurance is $2,700. each time and will also need to be done a few times in order to get a trajectory. This is more info, but I hope it can be helpful for you even if the coverage is different.

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founding

Thank you!

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It can be exhausting! Hang in there🙂

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Hi🙂

The testing is new to me, too. I guess it is an additional help beyond MRIs. He is hoping to see a trajectory over a few of these tests, so it will take time.

I think I remember that you are also in the US. I travel to UT Austin for neuro visits, maybe there is a university near you that could provide this testing. I think this new tool is helpful to them, too.

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founding

Good memory! (Pun?!) ☺️ I have to go to the coast fairly often for things, usually Orange County. I didn’t think this would be rocket science here. As it happens, my neuro is moving back there after first of year, so I may as well wait! This is one of those situations where we get exhausted fighting for our “best in the world” medical care. The hospital system here is objectively well regarded. But really lousy at the patient level.🤨

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founding

Thanks, Sheilah. Never heard of blood testing. I have been waiting forever for MRI due to need for anaesthesia. I doubt they can do it in my odd location. Smh. Brain volume loss, some white and gray matter noted on CT, but those are useless for us.

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PS Are you able to take Xanax for an MRI in place of anesthesia? That works for me.

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founding

I wish. Cochlear implant. Can’t tolerate the unbearable noise. They hate spending the money because it involves the hospital. Grr..

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Oct 21Liked by Gavin Giovannoni

"Detecting SAW early may help identify pwMS eligible for tolebrutinib early on at a stage of their disease when they can derive the maximum benefit from tolebrutinib’s effects."

Can you please develop this point a bit more? Are there any trials here in the UK planned in the near future? Do you see any other pathways to access tolebrutinib otherwise?

Tony

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No early access schemes yet. The drug still has to get a license and it may only be indicated for more advanced MS, i.e. those in the so-called non-relapsing secondary progressive phase of the disease.

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Oct 21Liked by Gavin Giovannoni

Hi!

I have MS and truly awful hand function so cannot use nine-hole, peg test etc however, my cognition is very good. I was once asked to complete a cognition test which was only hindered by the fact I had to ask my partner to input the answers which obviously caused a delay. Are you considering any cognition training for people like myself? Thanks

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Oct 22Liked by Gavin Giovannoni

Hi - can you not partner up with games already out there? The app Elevate has a broad spectrum of ‘brain training’ games on it and if you could look over those for pwMS for what you need extra you’d be there. The games show your improvement, go up levels, give badges, are about maths, words, memory and more - everything. You do currently have to pay to subscribe to it, but there might be options. There’s no sense reinventing the wheel.

My UK neuro has no interest in checking my cognitive ability until it’s an issue affecting me noticeably every day. No baseline. No picking up what I can feel… 😔

I’m learning bridge and do some games regularly.

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Yesterday evening, after reading this post, I watched the amazing Dr Michael Moseley on his just one thing. It was all about how to improve cognition. Everyone. He talked about how the Myelin sheath can strengthen. Does this also apply to the MS brain that has dozens of lesions in white & grey matter? Or do we have to work harder, hence 20 mins on my piano is exhausting. Definitely worth watching. Such a brilliant inspiring and happy man.

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founding

I find cognition being the most troubling and frustrating part of smouldering. Perhaps even frightening as the years roll on. Word puzzles and voluminous reading I continue, however it seems that anything with numbers is a pure brain fry. I write, but I’m totally annoyed with tremor and computer screen issues. (I read that faster refresh rates on screens are easier for vision. Hmm.) I find I can’t dictate for creative writing (as I can for technical writing). For whatever reason, I need to physically put pen to paper or type, as opposed to dictation for creativity, but I’m working on it…I can’t believe I used to write with a fountain pen! I’m a great cook but, wow! that’s definitely an area that opened my eyes to cognitive decline. It’s a physical/mental multi stepped activity that used to be so simple. My trick now is to measure ahead of time and double check everything for timing. And this has shown up only in the past several years. I don’t know how much pushing myself is helping or hindering at this point, I have to continually gauge. There’s a wealth of information and I love all of the great ideas here. Lately, I’m so sleepy (fatigued?) and vertiginous, that I’m a cranky smouldering soul. (Please, Prof G, perhaps a magic elixir?? :) Just joking; thank you as always. Cheers and good wishes to all!

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I completely understand. I have a couple of blogs that I try to write on but it's difficult to type anything through dictation, it's very much easier for me to type something with my hands while thinking about what I want to type rather than speaking what I want to type. It is some kind of odd disconnect. Think it has to do with a physical connection to the creative part of the brain. As far as cognitive decline I have found that I have more problems when I am stressed, or my body is really tired, or my body is heated up too much such as in a pseudo-exacerbation. Other than that I find that I have trouble with word and name recall most of the time.

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founding

I understand the word recall. The dictation v writing really is, as you put it, an odd disconnect. Technical writing? Dictation is fine. I have an entire outline typed/written for something creatively humorous, but I don’t know if it will ever get done. I have a journalist friend who suggests dictation but my words feel like all thumbs, if that makes sense as a weird metaphor of sorts!? Always good to hear from you. :)

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