Forum Replies Created
February 25, 2021 at 3:33 pm #192914Reply To: Ivf tips and advice
I 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.February 20, 2021 at 6:34 am #192804Reply To: Housing – Needing a bigger property
Get 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.February 18, 2021 at 11:56 am #192734Reply To: Becker MD Screening
Thanks 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.February 16, 2021 at 4:49 am #192679Reply To: Becker MD Screening
I 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.January 1, 2021 at 1:57 pm #191950Reply To: Possible benefits how will I survive
It 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.September 17, 2020 at 5:04 pm #189812Reply To: Possible benefits how will I survive
I 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!).July 2, 2020 at 3:45 am #188461Reply To: A little hello
Hi 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.May 13, 2020 at 4:26 am #187746Reply To: Knee Pain
Lately, 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.April 25, 2020 at 2:14 am #187551Reply 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.April 21, 2020 at 11:39 pm #187435Reply 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!April 18, 2020 at 7:11 pm #187332Reply 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!