Hello. My name is Mary. I am 68 and have myotilin based myofibrillar myopathy. I have a cousin with the same condition, which must have been passed down to us from our grandmother.
I am still walking, with a stick, but slowing down quite a bit each year. I enjoy travelling and also aqua aerobics which I try to take part in around 3 times a week. I invested in mobility scooter earlier this year which is great as it fits in the boot of my car. Now I can keep up with my partner and grandchildren when we are out and about .Although my patner Alan had to lift it out for me
Reply To: Hello from new poster with Myofibrillar Myopathy
I also have Myofibrillar Myopathy but mine is linked to the myotilin gene. I am still walking with a stick but my balance isn’t good and I have trouble getting up stairs and hills. I also tire quite quickly nowadays.
I invested in a mobility scooter earlier this year and this is a great boon when out and about as it folds so it will fit in the boot of my car. I can now keep up with my partner Alan and also my grandchildren.
Good to have contact with other people with this rare condition.