Forum Replies Created
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Reply To: Becker MD Screening
Sorry I didn’t reply to you, Cat, my daughter told me she has received an appointment letter from the hospital and will keep me informed.
Reply To: Ivf tips and adviceI wish I could help, it must be a traumatic time for you. My 18 yo daughter will probably have to look at IVF if she wants to avoid passing on Becker MD. She is a carrier due to my having the condition.
Reply To: Hi, I’m Craig with LGMDHi Craig, glad to see you have reached acceptance so quickly, I felt so angry and resentful for many years. (I’m 45 and was diagnosed with Becker MD at 28.)
Reply To: Housing – Needing a bigger propertyGet onto your local councillor, that is what they are for! Are you in touch with a genetics nurse or suchlike? They could write a supporting letter to the council. Don’t take no for an answer, be a pest and keep at them. The council house I and others in my street live in is new build and they were built around the needs of the individual tenants.
Reply To: Becker MD ScreeningThanks Mike and Cat, I would certainly encourage them to take whatever help is offered. They were tested as infants and are both carriers so I have no idea what else they might be looking for.
A brief scan of the internet and there is talk about donor sperm or eggs, adoption etc. All decisions they will have to consider in the future I suppose. I just wish I had been diagnosed before either were thought of, I actually hope my 18yo is serious about not wanting children of her own.
Reply To: Becker MD ScreeningI was thinking the same thing, just wondered if anyone had a thought on the subject. Neither of them seem to be particularly bothered about it, but still I would have liked to have some information to impart.
Reply To: Possible benefits how will I surviveIt is commendable that you are still tyring to do your work, but what happens if you cause an injury to yourself or someone else. Is it worth it?
OK, the decision was taken for me by my employer, but it was like a weight being lifted off my shoulders in the end. I couldn’t have lived with myself if I had killed or maimed someone at work, when I knew I wasn’t safe.
Reply To: NewYear GreetingsHappy New Year fellow travellers!
Reply To: Out and AboutI am fine thanks, and on reflection think I shouldn’t have aired my complaints on here. For all I know, the man was too embarrassed to say anything. Sorry I posted three times too!
Reply To: Pet photosIt didn’t work, never mind!
Reply To: Pet photosHow can I upload a picture of my dog? Every time I try, I only post a string of numbers.
Reply To: Exoskeletons in possible futureRobocop lives!
Reply To: Possible benefits how will I surviveI used to be scared of losing my job as a bus driver, but the fear was worse that the reality. Both ESA and PIP, along with having my rent paid, meant I was probably better off not working. I’ve been living like this for 11 years in December.
Of course I understand that many people would take a big hit in the pocket and have to cut their cloth to suit, but thank the gods we still have a safety net in the UK (Despite the wishes of HMG!).
Reply To: A little helloHi Andi, I have BMD and both my daughters (17 and 15) are carriers. I am divorced and so don’t get much of a chance to ask them about this sort of thing, especially since the Covid 19 pandemic; in fact I haven’t seen them since early March! The point is, they havent had any problems relating to BMD.
I am still ambulant but pretty unsteady on my feet, walking with the aid of a walking stick of late (was brought home in an ambulance at Christmas time after bashing my head on the pavement). I never learn though, as I fell in the park last weekend whilst walking the dog. I couldn’t get up, and was shuffling about on my hands and knees for ages, until I was helped up by passers-by (many people wouldn’t help me unfortunately).
Anyway, I hope you are both getting somewhere with the hospital etc, it isn’t exactly a lot of fun, this md business.
Reply To: Return of I-spy!!Turntable?
Reply To: Knee PainLately, when I try to stand up from my armchair, I end up in the “skiing” position, my knees not wanting to take me the whole way up. I plonk down onto my bum again, and try once more in a few minutes.
Things seem to be developing all of a sudden, after years of almost unnoticed change.
I suppose these little issues are just another hurdle to clear. We adapt and carry on.
Reply To: Return of I-spy!!It’s got to be bird feeder.
Reply To: Inherited distal myopathy!!I solved the hair cutting problem years ago, it involves a safety razor and shaving cream! Not very appealing for the women, but 10 minutes every 3 or 4 days saves alot of time, money, and batting off inane questions from the barber.
I would however like my head shaved by Mahesh Hayward at Gentlemen and Rogues. You could do worse than watch some of his beard and hair cutting videos on YouTube.
Reply To: Inherited distal myopathy!!I exercise by walking my dog, that’s about it. My neurologist, that I see annually, she sent a physiotherapist to visit me at home about 2 months ago, but I haven’t really followed any of the exercises she set me because they just cause pain for no gain as far as i’m concerned.
You would need to watch very closely to see me do a lunge, all the while holding onto the counter and table on each side; I’m talking a couple of inches of movement! If I go any further, I just collapse, just like the puppeteer has let go of my strings.
I am on Gabapentin and Amitriptyline for pain management. That and Bell’s whisky, which I struggle to get on prescription!
Reply To: Inherited distal myopathy!!I hadn’t heard of your condition, Tracey, but I sympathise as to the timing of your receiving your diagnosis.
If there’s one thing we have in common, it’s continually explaining our conditions to all in sundry. Even GPs often remark that we are their first MD related patient!
