January 18, 2023 at 7:29 pm #202783New blog from someone with LGMD
Absolutely no idea if this is allowed on here but here we go anyways.
I have created a website where I plan on posting regular blogs. The below is a first instalment and it only felt right that I started with my journey of being diagnosed.
The long term goal is to not only help others, by hopefully reading my journey and gaining a bit of perspective from it, but also as a bit of self help, where me voicing what’s happened/happening and other things, will hopefully help me help myself.
For anyone interested, heres the link to my first blog post: http://bit.ly/BeingDiagnosed
JonnoJonno118ParticipantPosts: 0Joined: 08/02/2017January 19, 2023 at 7:02 am #202784Reply To: New blog from someone with LGMD
You are very lucky to have your fiance and child in your life, I know how much I wish things had worked out for me and my ex wife but life goes on. My daughters are thankfully doing very well, and I never grudge the fact they don’t live close by.
If writing this blog helps you and others, then I certainly wish you every success.
All the best
RanaldJanuary 19, 2023 at 9:59 am #202785Reply To: New blog from someone with LGMD
Thank you Ranald, I appreciate you taking the time to read it and thank you ever so much for the kind words. I really do believe I am lucky to have them both in my life. I’m sorry to hear that your relationship broke down.
It’s good to know that they are doing ok, and with the internet the way it is, at least you can maintain a relationship even with some distance. Before my dad passed, he spent 7 years in Australia. We managed to maintain a relationship with that distance between us, with phone calls most days and Skype calls over the weekend.
Wishing you happiness in whatever you find it.
JonnoJonno118ParticipantPosts: 0Joined: 08/02/2017February 28, 2023 at 12:45 am #202807Reply To: New blog from someone with LGMD
Just had a look,good honest information
what a sh@t show your local council informed you to go leave your home to shower at a homeless showers facility rather than fit a stairlift.
Try not to risk at all falling, I know a guy who also has LGMD he fell and broke his leg. Once Broke and in cast he never regained walking ability as muscle weakness and inactive in cast will do that
A fall will basically mean wheelchair for life in our cases.Tomtom01ParticipantPosts: 0Joined: 27/02/2023April 13, 2023 at 2:35 am #202852Reply To: New blog from someone with LGMD
I’m a bit late to reply on this thread TT but there we are.
It is a great concern to me and I’m sure for many others, the fear of breaking bones when we fall. I fall fairly frequently and at nearly 48 I am not as “robust” as I used to be.
My council has recently fitted a wet room and bidet toilet in my council house. The latter is a “dogsend” as it means less showers required (no need to elaborate there I think), equating to less falling opportunities!
I spend 22 hours a day in this small house, so at least I could summon help if required;I don’t tend to fall much when on my daily dog walk (using ByAcre Overland rollator).
My biggest worry is what would happen to my dog if I had a broken leg and stuck in a wheelchair. I couldn’t bear to be parted from him.
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