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Hello! I have 2L also. It would be good to hear your story

Is like a ghost town these days! Hello BTW.

Hi all,i haven’t been on here for a while i don’t have limb girdle but the md is affecting my hip flexors and proximal leg muscles, i now walk like I’m drunk also get hip pain and knee pain now have to use a stick don’t like this one bit any info from anyone else and how you deal with this. Just one over thing we all see charity ads for cancers the blind heart foundation and many others but i haven’t seen any for the md community especially for children with this condition.what does everyone else think best wishes all .

So much has been going on here . Least of all are the comments on the forum. I have started a separate column for the thoughts on that. I might get sacked but it is time something changed. I am having to retype this answer as my previous one was deleted .

Cat I have also been suing sticks to get about mostly. I also use wheels when I am out. The sticks I use are Ski poles or similar. They give me better upper body support and allow what little is left of my lung function a little more support. They are less likely to appear to identify me as someone who cannot walk, although that was never a reason for me. However, I had them kicked from underneath me three times whilst in an ASDA store yesterday. The loops at teh end also mean I do not have to keep a grip on the poles all the time as the pressure is through my hands and it is mostly a downward pressure. Easy to use and has lots of other uses too like retrieving things I have dropped. Do try them if you can.
Ranald. Get a second opinion! I can verify that the suggestion you have been given does not work. I sed to be a qualified drone pilot. Walking to collect the aircraft, albeit not far, did not help even though I did it many time a week. Now I cannot do it at all. I have seven children and nine grand children, so you can imaging my house is like a railway station, and they need a lot on exercise to keep them sorted. that doesn’t work either. So no, going to a club will not get rid of your pain. Chronic pain, in my humble opinion will not go if you try and keep your mind off it. By its very definition it is chronic, i.e. long lasting. Sadly you will discover that most medics, most people, have not got a clue about MD. One of the reporters on BBC has it, but it is never mentioned on this “public service” broadcaster. I can also empathise when one Christmas my Tramadol was discontinued as I “no longer needed it”, and I had to go cold turkey as a consequence. Tis is truly where MDUK should be educating, but regretfully it is not happening. I do believe that there are more folk with MD than injured donkeys in this country. My pain consultant has been amazing, willing to try anything for me, and for now my MD pain is under control. Other oain is no. You are entitled to a second opinion go get one. Tramadol is not a lot to ask and indeed less f a problem than Methdone which is given without question. When i was working I always listened to patients. They know their body better than I. You know your body, go find someone who will work together with you.

Mike

Hi Mike i actually already use walking poles as I’m tall i find walking sticks too low and make me stoop my hand sore also because they don’t have that look.the way i look because of the md i have makes me look older.i do find that I’m more stressed by this though i don’t convey this to my medical professionals, and yes you definitely know you’re own body when the ot,s and physiotherapists tell you that it’s the right height for you and it’s not and give you exercises that do nothing and cause more pain,last year i did an art class one day a week for a few weeks which was painful and it wiped me out so it definitely didnt take my mind off my pain. Just a last thought the muscular dystrophy community needs more attention out there ours is one of those that is over looked

Thank you BeadyBird that was very nteresting.

Mike