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@oonagh wrote:

Andrew – hope you enjoyed your time in Nottingham during your degree .

Yes though i’ve not been to nottingham since 96′ so its a while back..when it was about a £1 per pint and in the days of student grants! These days you have to take out a loan just to buy a pint!

@andyb wrote:

@oonagh wrote:

Andrew – hope you enjoyed your time in Nottingham during your degree .

Yes though i’ve not been to nottingham since 96′ so its a while back..when it was about a £1 per pint and in the days of student grants! These days you have to take out a loan just to buy a pint!

A pal recently visited her friend at eading Uni and discovered that a pint a the Uni bar was cheaper than a loaf of bread at the Campus shop!!!

Hi Steve,

I have becker’s like yourself but a few years older. I get backache in my lower back quite alot..i think because of the curvature on my spine which is common with our condition so i think this is quite normal. When i had physio they gave me exercises to try strengthen core muscles around lower back/pelvis area which did help though i struggle to keep motivated to do them! So i’d say the backache is a symptom of becker’s. My knees sometimes ache though i’ve got a recurring twinge in one which is the result of falling. If i’ve been standing around alot they hurt more. I suspect probs with knees are a result of compensating for weaknesses elsewhere in legs and back or maybe carrying extra weight if your not getting sufficient exercise. Shoulders ache sometimes if i’ve slept in wrong position ..used to get aching neck much more before we got a new bed so might be worth looking if you need a new bed and/or pillows. Again it could be related to compensating for weaknesses elsewhere as i know i rely alot on my arms to get up for example..though i’m quite muscular up top in comparision to my legs.

Feet..not really noticed..though if you look at my feet i have quite a high arch to them (also quite wide which may or may not be relevant). When you look at the soles of my shoes they all wear more on the outside of the heel because of a difference in gait. Do you get the same problems with all shoes? I tend to wear trainers/slippers much of the time or i found walking shoes from Wynsors (online for only about a tenner) are quite supportive.

What i would say is to try and eat healthily as carrying extra weight will put extra strain on your feet, legs and back. Exercise obviously helps with that. Of course it’s easy to preach this stuff…another matter actually practicing it!!

I would say to try and get referred for physio by your GP or hospital consultant if you have one as it is more than likely to be of benefit to you.

Hope that helps and would be interesting to hear from others with BMD too.

Andy

p.s. Sam, i noticed email notifications didn’t appear to be working for new posts then all of a sudden a whole lot came through this morning at once from a bluehost address.

No no medication..except the occassional self-prescribed Nurofen. I’m under 12stone (and about 5’10) but have lost some weight in the past and noticed a difference in my legs so losing weight certainly helps . I don’t possess a wheelchair or ever used one but in the last few years i’ve become more reliant on a stick more for confidence than anything i think. I’d rather put off wheelchairs for as long as possible and keep as active as possible to try maintain the mobility i’ve got. Can’t do stairs (other than on my bum) and any steps bigger than about 2 inches are quite a problem. About 4 or 5 years ago i was living in a flat and not getting out much as i used to worry i’d not get back to the 5th floor if the lift broke …but improved alot when i moved to bungalow and started doing alot more about the house. I get tired quickly though and always overdoing things and i’ve come to learn that at least 8 hours sleep is needed everynight.

Well 8 hours is probably going to be quite unlikely here when baby arrives too! Making the most of it whilst i can!!

Hi maybaby, welcome to the forum

I like your website I think you’ll find that other members will relate to you story of how long it took to get diagnosed as many have experienced this too.

I totally get where your coming from on the hand splint wearing, years ago I was told I would have to wear leg splints of a night time, they too were uncomfortable and caused no end of problem in bed couldn’t roll in them so eventually I gave up with them!

Hopefully you’ll find the forum fun and informative and maybe make some new friends too

Hello

I think its great to see so many people getting involved with Talk MD!! I think its great having a forum where we can all chat together and share our stories.

It would be good to get to know about people’s interests and hobbies. Remember we all have lives outside of our disabilities!!

Thanks

Andy

Hi Everyone

It’s great to see so many people using Talk MD already. I’m new to this so just wanted to say hello!

I’m the volunteer fundraising manager for the Muscular Dystrophy Campaign in Scotland. I’d love to hear from anyone who is interested in getting involved in volunteering, joining one of our new local committees or doing any fundraising activity.

Cheers
Lorna

hi im james
am a 43 year old husband and father of 5. i have lived all my life with Facio Scapulo Humeral Muscular Dystrophy. my wife and i have been together for over 23 years and she is my registered carer. i did recognise a huge difference in my muscle strength and limitations at an early age but like most fsh sufferers i adapted my movements to suit. have really deteriorated over the last 10 years or so as ive had a couple of surgerys for another problem im having.
been on dla and income support for a while as i have not been able to work. the strength in my upper body just is not what it used to be and my lower back and legs are now weakening more so than ever. try my best to just get on with it as i have a responsability to my household. i pick up and drop my kids to work and school, to the groceries, pay bills etc. enough to keep me busy. makes me feel like im still contributing. my wife is here for me round the clock and when she needs a break my kids sometimes fill in. the 2 eldest have moved out but are still close by to give a hand if needed. i like everyone else on dla is concerned with the attack on the disabled by this government in an attempt to clear the deficit. re-tests on existing claimants seems unnecessary and is adding to the stress we already feel.