sporadic inclusion body myositis: what it feels like
“we don't have any treatment and we sure don't have any cure for it,” doctors told tom wood after he was diagnosed with sporadic inclusion body myositis.
8 minute read
tom wood lives with sporadic inclusion body myositis, a rare degenerative disease that causes muscle weakness. supplied
imagine one day your doctor tells you “we don’t know what caused it. we don’t have any treatment for it and we sure don’t have any cure for it.” that was tom wood’s experience when he was diagnosed with sporadic inclusion body myositis (sibm), a rare disorder that is estimated to affect only 10 to 112 people per 1,000,000 in the general population, seen more often in people over 50.
sibm is a complex autoimmune disorder that results in muscle weakness and eventually atrophy. it usually affects the muscles in the legs (especially the quadriceps), as well as the wrist and finger flexors, according to the national organization for rare disorders (nord). because of this, balance and grip strength are often affected, and falls are common.
with good humour and an unwavering positive outlook, tom spoke to healthing about living with a rare, poorly understood diagnosis and what he’s doing to blaze a path for the future.
what led to your diagnosis?
i had some problems — maybe about seven years ago — where my legs weren’t working as well. i had broken my leg that year. i put off getting it checked because i didn’t know what it was, [but] eventually i went to a physiotherapist. he felt it was a piriformis muscle problem, which causes muscle wasting and all that. so i had physiotherapy and blah, blah, blah. but it got worse. i was sort of ignoring it, in all honesty. and then i finally got trapped by my doctor to have a physical, she sent me to a neurologist, and i i had a muscle biopsy [there are many types of ibm]. i was diagnosed with sibm — sporadic inclusion body myositis. it’s been about two years now, going on three.
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tell me about the biopsy.
in my case, it was a bicep muscle that was weak, so they took a chunk of the muscle cells from my bicep to examine. before the procedure, the nurse asks, ‘is there anything you’d like to hear in the way of mood music as this goes on?’ and so i suggested some mongolian throat singing tunes by a group called huun huur tu which i really enjoy. so i had an operation while listening to throat singing.
like i say, i like to enjoy every minute.
what went through your mind when you heard the diagnosis?
sort of a dull hum, because i’ve never heard of it. it’s a disease that only affects somewhere between three and 30 people per million, so it’s not exactly a discussion for the dinner table with anybody i know. even my doctor hadn’t even considered it because it was so rare.
so you have this very rare disease that a lot of doctors don’t know much about. how did that feel?
well, the doctor i was seeing was, i think, one of the top specialists in this type of disease in the city. it wasn’t so encouraging, because he said, ‘tom, this disease, we don’t know what caused it. we don’t have any treatment for it and we sure don’t have any cure for it.’
i did a lot of internet research. sibm doesn’t seem to be hereditary, although when i check back in my family history, my father and his father both had what appears to be a similar disease. but since nobody knew about it before 1970, they wouldn’t get a diagnosis. it was just ‘well, they are getting older.’ if anything, the disease does closely mimic the effects of getting older — you get feeble and you fall more often.
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i eventually came across the myositis canada group and i figured if i got in touch with them, it would at least be an opportunity to find out what’s going on in the world of ibm.
is there a treatment for myositis?
yes, you sit around and wait for them to develop a treatment [joking]. it’s recommended you do all the things that a normally healthy person does — eat well, avoid getting overtired, get a good night’s sleep, keep your weight under control. i was already into that.
but in talking with the physiotherapist — who worked with a neurologist at our one of the bigger hospitals here in calgary — she said [that] since when you exercise, the cells divide and re-form, this process wouldn’t happen properly for me because of sibm, and it could get worse. i was thankful for that information because i think most guys, when they hear that there’s a problem that might be helped by exercise, tend to go all out and really get a lot of muscle burn, which would have been very detrimental to the whole process.
so, i just tried to lead a reasonably healthy life, keep a positive attitude, and do good things in the world as best i can.
since there is not much known about sibm, you’re really mapping your path as you go.
my wife had cancer, and i had done a lot of work with the sage centre in calgary — it’s a ‘living well with cancer’ program. there was a training program for people with diseases that there wasn’t a lot of information about or that didn’t have a cure. i learned that you wake up and you say, wow, another day, and then go to bed and look up at the ceiling, and you say, wow, another day. that’ll get you through a lot.
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that’s an incredible mindset.
it is. they were an incredibly positive bunch of people.
the other thing is, if you have [a health issue] and nobody knows where it’s going, a good group to hang around with is a bunch of people with the same disease. say [for example] with cancer, you develop itchy skin. well, in the cancer group, it turned out that some of the people had gotten doctors and compounding pharmacists who would do up specialized itching creams for them — that would help others.
is that why you joined myositis canada?
i figured sitting around huddling in the dark wasn’t going to get me anywhere, so i should hook up with a group that was trying to do something worthwhile. i was quite pleased when they asked if i would become part of the board of directors.
it’s a volunteer organization aimed at improving life for people who have various myositis-related diseases. it’s been around for slightly longer than i’ve known i’ve had the disease — i think they were formed in 2015. they work with the university of calgary, as well as the hospitals in calgary and are also connected with groups around the world. i think that hospitals and universities like to have organizations that are associated with sibm — after all, it’s a rare disease and where are you going to find people to share information or participate in research?
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are there any special considerations that you have to take in your daily life?
well, since your legs don’t want answer to the helm, as it were, and you lose a lot of grip strength and falling becomes quite an interesting problem. before, i would walk the dog in the wilderness around calgary. [there is a] magnificent, rather wild park system, which involves climbing up hills [and] walking down little paths. i had to abandon that, though, because if you fall, it’s quite a search to find you. even walking in the house becomes a bit of a problem because if you fall on a tile floor, there’s a nasty tendency to cause damage, either broken bones or cuts, or bruises.
does sibm only affect your legs?
it affects the long muscles attached to your limbs more than anything. for example, the muscles in your forearms that make your fingers work may not work as well for fine detail. so carving, which i like to do, or making stained glass windows, becomes difficult. my grandfather liked to repair watches, in his later years he couldn’t do that. that’s why i suspect he had the same type of thing going on with him.
but sibm can also affect your swallowing and speaking ability. so your voice will change or you will not be able to swallow food — which can lead to some unpleasant things you may have to consider to get nutrition in your body. but i’m hoping that holds off.
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or that there’s a treatment in the future.
i have no doubt that, eventually, there will be a treatment. i guess the good thing is that it’s not a disease that affects the length of your life, so i have time to wait for a cure.
when you think of people that don’t have 100 per cent ease at walking, you often picture them with a cane or a crutch or braces. because my wife couldn’t walk down stairs [with her diagnosis], we had a stair chair put in, so i can use that if i feel especially uncertain. i’ve also got a nice walking stick if i go for a walk or go shopping.
there is a company that is manufacturing an exoskeleton (a frame that can be worn to support the body) for your legs which will allow someone who doesn’t have much leg strength to do things like participate in marathons. it is incredibly cool. the suit itself costs something like $40,000, which is outlandish when you consider what you pay for a small car or even a used car these days. and though there’s not a whole lot of user satisfaction reports for people who hook up with such a system, it is interesting to know that [aids are being developed].
what brings you joy in your day-to-day life?
one of my main enjoyments in life is what you might describe as a psychic resume service — that sounds frightening [laughs]. i will be talking to somebody while i’m walking the dog or sitting on a bus and they’ll mention they are trying to find a job, but they don’t know how to write a resume. we’ll get their resume together and prepare for the interview. most every one of them has been successful. it’s kind of self-serving, because the world i want to live in is good people getting good jobs. eventually, i’ll need people with good jobs to help me do things and i’m happy to stock that up.
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would you say you’ve embraced stoicism?
it’s not so much that you you embrace it as you ingest it. you absorb it and put it into your body and your way of life. it’s not a thinking process. you don’t have to say to yourself, ‘well, this has happened. i must look at the positive aspect of this bad event.’ you just learn to do it. it becomes your way of doing things.
for more information on myositis can visit myositis canada and the myositis association.
what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn
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