Yes I go to the gym a lot. It's only 10 minutes away, so I jog but that's getting harder as I approach my 9th decade. Still swimming as often possible all year round. It's probably keeping me reasonably well. Although some would say older pwMS don't have such active MS so it could just be anno domini.
I have had MS for a number of years and feel that going to the gym has aided my own cerebellum. Are there any other MS patients who often go to the gym as well?
Dec 3, 2022·edited Dec 3, 2022Liked by Gavin Giovannoni
It certainly is dizzying reading this and is somewhat scary (again). I had some of these symptoms early on and remember the exacerbation(s) and corresponding MRIs/Xrays. My guess is that the symptoms are not uncommon- intention tremor (shaking), eye movement deficits (difficulty arriving at a steady stare), balance issues, fine motor control (handwriting), fluent speaking issues; and many others all accumulating at the same time- and my consequential fear of “falling apart”. I never fell apart completely and recovered from it all pretty well over time. But I am left, after reading about this women, wondering perhaps if I am just not aware of my deficits (in part, denial?) Compound this with a Dr’s report (5 yrs ago) that described and implied I was not aware of the severity of my SPMS situation.
I do live with my wife who’s been watching me for 25 years, talk to my brother often, have established and keep local friendships. The feedback and reactions to me, I get, seem about normal. Is it possible I’m just not aware? Maybe they don’t tell me? So I would think a lot of readers are wondering the same. I feel sorry for the woman. I feel sorry for myself. I feel sorry for the doctor who has to try to put all this together and communicate it to a patient who may not “get it”. Uhgg- the whole thing.
But no, doctors never discussed “cerebellar-associated cognitive impairment”. But when this was all happening 25 years ago, I was told about lesion in my brain stem or something, in sort of an “early” primordial part of the brain. Looking at a diagram now, I am thinking midbrain. I know, given the complicated and intimidating nature of things at the time, I wasn’t about to remember the name of the brain area or any specific explanation for what it was supposed to do.
Cerebellar issues seem the most daunting, and I can completely understand confusion in medical records. I have my medical history now complete with dates on the computer to print out, because reciting years of medical history is itself traumatizing. I have lost so much function over the years and I notice it more myself than others do, I believe. They like to think I’m good old me. (Old is the operative word…) The decline of cognitive function was extremely insidious. When did reading a long novel or classic, or solving the Sunday crossword became exhausting? It didn’t happen overnight. When we’re aware of our “normal” aptitudes, we know what’s gone. When I lost my L hearing (and balance) in 2003, I was told this was an incident at the brain stem level, MS, vasospasm, but definitely ongoing MS cerebellar involvement. (Add to that 5 years ago the discovery of an infarct on my cerebellum.) My balance issues involve peripheral and central factors, so vestibular rehab just made me throw up. I found I couldn’t drive at night; it felt like I was in a video game. Even in daylight, I couldn’t look away from the road for even a second. (No, I don’t drive!) Likewise, I can’t input numbers quickly from a paper to a phone or computer that requires looking quickly up and down and using some kind of an immediate memory function we don’t realize we use but take for granted, like we do balance. (Prof, G, do you know what I mean?) I can’t tolerate computer screens; I’ve been advised they “refresh” ie move imperceptibly at a rate your brain doesn’t recognize unless you’re impaired. Tremor and nystagmus are two of the most frustrating conditions. Due to tremor, my exercise is limited to light silicone bands. Now, I have vertigo swimming if I dunk my head under the water. Knowing this is not going to improve is quite frightening. I’m very aware of what I’ve lost. You can imagine the overload all of this causes physicians. I’ve never seen an accurate medical history in my charts, but I’m too old now to worry much about it. Thanks for this, Prof G, I think. This is a tough one. :/
Professor G - I do recognize some, but not all, of the symptoms you describe. While my MS is fairly stable after 38 years, I am finding emotional control increasingly challenging. This is very troublesome, because adults aren't supposed to have temper tantrums. I don't want to drive my loved ones away, but I can't expect them to get used to my little rages either.
This explains in a nutshell what I was told when I was diagnosed with highly active rapidly evolving RRMS on 1st August 2014 and following my neurophyscological assessment conducted afterwards.
Reading this MS Selfie confirms what's been discussed with me in subsequent clinics.
Thank you for your clarity in this MS Selfie, it could be written about me :-)
While I do not belong to a gym, my neurologist has said my daily yoga habit has helped my balance issues from progressing. Daily walks are greatly encouraged as well and seem to make a difference in balance and mood.
This is terrifying and new information to me. I have kept up with MS stuff for a fair few years but didn't really know much about this array of problems. I have to fight to get an MRI and certainly had no idea I should ask about lesions in specific parts of the brain. I don't experience these symptoms so suspect I don't have lesions in the brain stem. Certainly I did not in 2005 when living in France. You get to keep your scans ,so I know where mine was (only one) and had just been diagnosed in the UK anyway.
Meanwhile the implications for pwMS with the lesions are pretty dire, from poor prognosis, to chaotic lifestyle, to susceptibility to RTAs and potentially losing their driving license, to sudden death.
I happened to have some virus to other last month which lingered. It was not Covid, but there were episodes of vertigo and nausea, not normal for me. Tinnitus is and I live with that, but it seems desperately important for MS clinics to pursue any patient with such lesions.
Someone I know, a neuropsychiatrist ,devised an app for pwEpilpsy to avert SUDEP. I have known about this for a few years. I think he got an MBE or similar gong. I'm shocked that SUDMUS is new to me. The App for SUDEP is saving lives and it occurs to me that maybe there should be one for SUDMUS. I worked with Prof Shankar, as he is called, on an idea for a credit card informing patients of the consequences of and symptoms of withdrawal from anti depressants like those little orange cards for pwMS issued by the MS Society to get urgent help in various languages. I wonder he could tweak the SUDEP app. Maybe I should ask him?
Thinking about an acquaintance with MS who ( I am told) relies on Tramadol to get her through the day and whose behaviours bring to mind some of what is being described here, would you agree with me that the Tramadol is likely to exacerbate everything? .
I’ve gone back and reread your previous article and appreciate this information.
Cerebellar-associated cognitive impairment has not been discussed with me, but I think it is worth bringing up at my next visit. I will forward this info to my partner and ask for his insight. It’s difficult to know if I am showing some of these behaviors without outside help. I went back and read my most recent MRI notes and nothing like this stands out to me, but I do know while most of my lesions are located in my brain, there are a couple at the top of my spine/bottom of my brainstem. Is this the same general area mentioned in your article? I am really bad at gauging these areas. I could never be a surgeon!
You're motivated and that will keep you doing something albeit less energetic than before. Don't forget, just lifting small weights when sitting, or pulling and stretching. You can get therabands online and if you don't have pukka weights, just use tins. Baked beans, dog food, whatever you have. Try to keep swimming as even floating exercises you gently.
Yes I go to the gym a lot. It's only 10 minutes away, so I jog but that's getting harder as I approach my 9th decade. Still swimming as often possible all year round. It's probably keeping me reasonably well. Although some would say older pwMS don't have such active MS so it could just be anno domini.
I have had MS for a number of years and feel that going to the gym has aided my own cerebellum. Are there any other MS patients who often go to the gym as well?
It certainly is dizzying reading this and is somewhat scary (again). I had some of these symptoms early on and remember the exacerbation(s) and corresponding MRIs/Xrays. My guess is that the symptoms are not uncommon- intention tremor (shaking), eye movement deficits (difficulty arriving at a steady stare), balance issues, fine motor control (handwriting), fluent speaking issues; and many others all accumulating at the same time- and my consequential fear of “falling apart”. I never fell apart completely and recovered from it all pretty well over time. But I am left, after reading about this women, wondering perhaps if I am just not aware of my deficits (in part, denial?) Compound this with a Dr’s report (5 yrs ago) that described and implied I was not aware of the severity of my SPMS situation.
I do live with my wife who’s been watching me for 25 years, talk to my brother often, have established and keep local friendships. The feedback and reactions to me, I get, seem about normal. Is it possible I’m just not aware? Maybe they don’t tell me? So I would think a lot of readers are wondering the same. I feel sorry for the woman. I feel sorry for myself. I feel sorry for the doctor who has to try to put all this together and communicate it to a patient who may not “get it”. Uhgg- the whole thing.
But no, doctors never discussed “cerebellar-associated cognitive impairment”. But when this was all happening 25 years ago, I was told about lesion in my brain stem or something, in sort of an “early” primordial part of the brain. Looking at a diagram now, I am thinking midbrain. I know, given the complicated and intimidating nature of things at the time, I wasn’t about to remember the name of the brain area or any specific explanation for what it was supposed to do.
Cerebellar issues seem the most daunting, and I can completely understand confusion in medical records. I have my medical history now complete with dates on the computer to print out, because reciting years of medical history is itself traumatizing. I have lost so much function over the years and I notice it more myself than others do, I believe. They like to think I’m good old me. (Old is the operative word…) The decline of cognitive function was extremely insidious. When did reading a long novel or classic, or solving the Sunday crossword became exhausting? It didn’t happen overnight. When we’re aware of our “normal” aptitudes, we know what’s gone. When I lost my L hearing (and balance) in 2003, I was told this was an incident at the brain stem level, MS, vasospasm, but definitely ongoing MS cerebellar involvement. (Add to that 5 years ago the discovery of an infarct on my cerebellum.) My balance issues involve peripheral and central factors, so vestibular rehab just made me throw up. I found I couldn’t drive at night; it felt like I was in a video game. Even in daylight, I couldn’t look away from the road for even a second. (No, I don’t drive!) Likewise, I can’t input numbers quickly from a paper to a phone or computer that requires looking quickly up and down and using some kind of an immediate memory function we don’t realize we use but take for granted, like we do balance. (Prof, G, do you know what I mean?) I can’t tolerate computer screens; I’ve been advised they “refresh” ie move imperceptibly at a rate your brain doesn’t recognize unless you’re impaired. Tremor and nystagmus are two of the most frustrating conditions. Due to tremor, my exercise is limited to light silicone bands. Now, I have vertigo swimming if I dunk my head under the water. Knowing this is not going to improve is quite frightening. I’m very aware of what I’ve lost. You can imagine the overload all of this causes physicians. I’ve never seen an accurate medical history in my charts, but I’m too old now to worry much about it. Thanks for this, Prof G, I think. This is a tough one. :/
Professor G - I do recognize some, but not all, of the symptoms you describe. While my MS is fairly stable after 38 years, I am finding emotional control increasingly challenging. This is very troublesome, because adults aren't supposed to have temper tantrums. I don't want to drive my loved ones away, but I can't expect them to get used to my little rages either.
really strikes a chord with me. Initial presentation was with 'brainstem inflammation '
I was /still am affected in this way but certainly was in complete denial at the time.
This explains in a nutshell what I was told when I was diagnosed with highly active rapidly evolving RRMS on 1st August 2014 and following my neurophyscological assessment conducted afterwards.
Reading this MS Selfie confirms what's been discussed with me in subsequent clinics.
Thank you for your clarity in this MS Selfie, it could be written about me :-)
Karen
While I do not belong to a gym, my neurologist has said my daily yoga habit has helped my balance issues from progressing. Daily walks are greatly encouraged as well and seem to make a difference in balance and mood.
This is terrifying and new information to me. I have kept up with MS stuff for a fair few years but didn't really know much about this array of problems. I have to fight to get an MRI and certainly had no idea I should ask about lesions in specific parts of the brain. I don't experience these symptoms so suspect I don't have lesions in the brain stem. Certainly I did not in 2005 when living in France. You get to keep your scans ,so I know where mine was (only one) and had just been diagnosed in the UK anyway.
Meanwhile the implications for pwMS with the lesions are pretty dire, from poor prognosis, to chaotic lifestyle, to susceptibility to RTAs and potentially losing their driving license, to sudden death.
I happened to have some virus to other last month which lingered. It was not Covid, but there were episodes of vertigo and nausea, not normal for me. Tinnitus is and I live with that, but it seems desperately important for MS clinics to pursue any patient with such lesions.
Someone I know, a neuropsychiatrist ,devised an app for pwEpilpsy to avert SUDEP. I have known about this for a few years. I think he got an MBE or similar gong. I'm shocked that SUDMUS is new to me. The App for SUDEP is saving lives and it occurs to me that maybe there should be one for SUDMUS. I worked with Prof Shankar, as he is called, on an idea for a credit card informing patients of the consequences of and symptoms of withdrawal from anti depressants like those little orange cards for pwMS issued by the MS Society to get urgent help in various languages. I wonder he could tweak the SUDEP app. Maybe I should ask him?
Thinking about an acquaintance with MS who ( I am told) relies on Tramadol to get her through the day and whose behaviours bring to mind some of what is being described here, would you agree with me that the Tramadol is likely to exacerbate everything? .
I’ve gone back and reread your previous article and appreciate this information.
Cerebellar-associated cognitive impairment has not been discussed with me, but I think it is worth bringing up at my next visit. I will forward this info to my partner and ask for his insight. It’s difficult to know if I am showing some of these behaviors without outside help. I went back and read my most recent MRI notes and nothing like this stands out to me, but I do know while most of my lesions are located in my brain, there are a couple at the top of my spine/bottom of my brainstem. Is this the same general area mentioned in your article? I am really bad at gauging these areas. I could never be a surgeon!
You're motivated and that will keep you doing something albeit less energetic than before. Don't forget, just lifting small weights when sitting, or pulling and stretching. You can get therabands online and if you don't have pukka weights, just use tins. Baked beans, dog food, whatever you have. Try to keep swimming as even floating exercises you gently.