Hello to you all.
I could really do with a bit of advice from the specialists, you guys.
I was diagnosed with limb girdle muscular dystrophy some 13 years ago and for the most part I have learned to roll with the punches and cope with what ever came my way. But recently…. In the last 9 months I have lost so much mobility, it seems to be changing my life quicker than I can adjust.
I am in the process of getting used to my power chair but what concerns me is whilst I’m letting the chair take some of the pressure of me I don’t want to neglect the good muscles I have left. Any tips or tricks would be greatly appreciated.
So let me ask you a question in reply. Do you see a physio regularly? I am sure you will have heard about if you do not use something then in the end it will stop working. A number of times a day I walk up the garden, and I do mean up. This gives me lots of pain over and above the ‘normal’ pain I have, to ensure that I will have use of my leg muscles as long as possible (I have FHSD). My physios always remind my to do these things, even though I could use a scooter if needs be, or even stop going there. It is possible that you have the view about losing mobility more quickly, because you have or because you are using your power chair or other support.
Briefly though talk to your physio, and if you do not have one get one it will change your life!