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Late Onsetters!
Hello there! I wonder if any of the forum have been diagnosed in their late 50’s or later? I’m now in my sixties and awaiting genes test results which were sent off last year. I have had MRI scans and CK test and have been told by specialist that I probably have a late onset Limb Girdle Dystrophy – I have been tested for FSHD which came back negative. I’m finding my walking is getting worse and other symptoms one of which is extreme fatigue. I have had blood tests to eliminate other things so it’s a matter of awaiting results. I am curious to find out if other folks have been diagnosed later in life.
Thanks,
JannaReply To: Late Onsetters!I thought I was late at 28! Now 48 and using a rollator and stick.
Reply To: Late Onsetters!Thinking about using a mobility scooter part time as falling in the middle of a road is not exactly safe. I am approaching the point where it will improve my quality of life, 4ather than struggling with a rollator.
My only fear of going onto wheels, is the potential weight gain. I am heavy enough as it is!
Reply To: Late Onsetters!I was given a rollator through the hospital physio dept but as yet haven’t had much pratice with it. I’d like to take it on the bus as I don’t have a car. Only problem our buses tend to get very busy – often with other people with rollators! It’s a matter of picking a quiet time, or just barging on with it regardless!
Reply To: Late Onsetters!Janna I was diagnosed in my early 40’s, some thirty years ago. I was only diagnosed because my son was seen about another matter by a consult. he in turn asked for genetics and here I am. I have FHSD with complications. Of course everything is on a downhill slope which at my age is expected. You will shortly have an official answer about your diagnosis but then, like all the rest of us you must plan a way through the rest of your life and how you deal with what may come, and I do stress “may”.
Always remember that we here on the forum and MDUK are here to help.Mike
So many love songs, so little love.
Reply To: Late Onsetters!Ranald, dont worry about putting on the pounds a scooter will make such a difference yo you, mine has. It will mean you have more strength left to get on with other parts of your life.
Mike
So many love songs, so little love.
Reply To: Late Onsetters!Thank you both for taking the time to reply to my post. I’m hoping the genetics test will give a definite diagnosis but I have heard that it doesn’t always come up with a diagnosis – or should I say mutation. I think it was mentioned that if that’s the case then I might be able to have a muscle biopsy. Will just have to wait and see – my problem is I suffer with ‘Inflamation of the Imagination’!
Reply To: Late Onsetters!Hi, janna I was diagnosed in my early fifties with opmd it runs in my family,which stands for oculopharyngeal muscular dystrophy. I have ptosis in both eyes which is drooping of the eye lids weak swallowing and facial muscles and weak hips and thigh muscles it is a late inherited form of muscular dystrophy, looking back now it was the power in my legs that first became a problem but all 3 symptoms more or less came together,which I had a genetic test for I hope this might be of some help.jeanette
Reply To: Late Onsetters!I was given a rollator through the hospital physio dept but as yet haven’t had much pratice with it. I’d like to take it on the bus as I don’t have a car. Only problem our buses tend to get very busy – often with other people with rollators! It’s a matter of picking a quiet time, or just barging on with it regardless!
I have a ByAcre Overland, it weighs less than 7kg. There is an even lighter one that is less than 5kg! Both fold easily for getting on the bus. (Bit pricey but very worth it).
Reply To: Late Onsetters!The ByAcre Ultralight is the lightest of the two, 8s more for urban use as has smaller wheels. I need the 9″ wheels of the Overland for dog walking.
Reply To: Late Onsetters!Thank you Jeanette. It’s interesting to hear people are being diagnosed later in life. I think the problem in my case is that they are fishing in the dark a bit as there is no history of Muscular Dystrophy although a few relatives (thankfully not me) who have suffered with Arthritis. So maybe they could have had MD mildly and were not aware of it. There are more tests available now than there were in the ‘olden’ days! People have asked me would it make a difference having a diagnosis when there may not be anything that can be done about it, but my feeling is that if you have a diagnosis at least you will then know whether other symptoms are to do with the muscular dystrophy or not – if you folliow what I mean.
Thanks again
JannaReply To: Late Onsetters!The ByAcre looks amazing and a lot less cumbersome than the one I have. I think the fact it’s lightweight would definiteley be an advantage on a bus and I’d be less likely to pull a muscle getting it on the bus in the first place.
Thanks for the info.Reply To: Late Onsetters!Hi all firstly I have osteoarthritis in many different joints very painful I also get pre diabetes now and then thankfully it hasn’t gone to being diabetic. And secondary that byacre sounds really good will look into that. Jeanette.
Reply To: Late Onsetters!The ByAcre looks amazing and a lot less cumbersome than the one I have. I think the fact it’s lightweight would definiteley be an advantage on a bus and I’d be less likely to pull a muscle getting it on the bus in the first place.
Thanks for the info.It really is easy to get on a bus with my ByAcre Overland. I wanted the Trionic rollator, with 14″ wheels but it was maybe a bit too big for on and off buses, although it looks a superior product.
Reply To: Late Onsetters!Triinic Rollator Walker 14er it is called. The Veloped, by the same company, that looks good also. Massive though!
Reply To: Late Onsetters!It is really good. I have had it for a year and a half now, still don’t regret it.
Reply To: Late Onsetters!Hope you don’t mind me asking Ranald but did you send off online for the rollator or buy it in person from a shop? It’s just that when you are spending a lot of money on something like that it would be good to have a go with it first.
Reply To: Late Onsetters!I bought it online, they were based in Harpenden. I would have liked to have tried it out in a shop but there was nothing anywhere near me.
Surely you have a certain number of days to return it if it isn’t suitable?
I am 5′ 9″ and have the handles set at the fourth out of five heights. I wouldn’t like to say how anyone over six feet would get on with it. The seat is pretty good, too. It takes my 14 plus Stone no bother. It folds in seconds also.
The accessories look very overpriced, I wanted the tote bag but it is over fifty quid!
If I had the choice again, I would probably have gone for the Trionic 14er walker. It was just the fact that I had to lift it in and out of the car or on a bus.
Reply To: Late Onsetters!I just re-checked, it was “Assist Mobility” I bought from. The website says you can arrange for a home demo! That would be reassuring would it not?
It seems there is a new model about to be unveiled, it looks like my Overland but in bright colours, made of an even lighter material, and with solid tyres. It is a wee bit difficult inflating the tyres I have found. As I unscrew my car tyre pump, most of the air escapes. Probably best with a bike pump.
Reply To: Late Onsetters!Thanks for the information – all the replies have been a great help.
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