January 11, 2019 at 10:26 pm #171698Reply To: Becker muscular dystrophy
I cannot begin to imagine how you are feeling as a parent finding out a diagnosis. There is such a lot to process and I’m sure you have many questions at the moment. My parents must have gone through similar when I was young. I am now 40 and have a type called Ullrich CMD
There is support out there and we will do our best to signpost and support the best we can.
I don’t know whereabouts you are or if you are being seen at a Muscle clinic. A good place to get practical information and help navigating things is via your regional care adviser.
Here is a link to the care adviser contact details by area
Give yourself time to digest everything, give your boy a big hug and please feel free to ask questions or share your thoughts.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015September 26, 2019 at 11:46 am #181391Reply To: Becker muscular dystrophy
Hi,I’ve not logged on in a while I suppose I have buried my head as my son was diagnosed last January at the age of 6 with BMD & now he’s turning 8 on Monday & his condition is classed as stable but 4 some reason I have recently started 2 get really anxious about it again like I did when he was 1st diagnosed,I was relieved it wasn’t DMD & was told this was a much milder form of MD although Thomas has some days where he can’t walk & now he’s having trouble with his arms it’s sad 2 watch but he’s such a happy boy & don’t let it phase him at all so I’m trying 2 b positiveLorrainemacParticipantPosts: 0Joined: 21/03/2018September 29, 2019 at 1:11 pm #181472Reply To: Becker muscular dystrophy
It is indeed a difficult time for any parent trying to cope with a situation like yours. I went through it with one of my sons when he was diagnosed by FHSD. Perhaps made a little easier as I was diagnosed at the same time. Nearly 25 years on he is a very successful IT person who can build, repair and modify computers as well as create websites and write code for apps. A far cry from or worries at the time as to what would become of him.
But your last sentence sums it up. You say he is a happy boy which does not let these changes phase him, but I strongly suspect that is because you are being positive, even if inside your brain is tearing itself inside out with concern and worry. It is what parents do, and clearly you are doing it well in supporting him. You will find a way together and give him a great future.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015December 31, 2019 at 7:19 pm #184193Reply To: Becker muscular dystrophy
Hello, I hope you are coping okay since your initial posting a month or so ago.
I am 32 now and was diagnosed with Becker Muscular Dystrophy when I was about 8 after my Nan noticed me running/walking on my tip toes.
Despite my muscle weakness I am still able to live a relatively “normal” life. I struggle with stairs but I can manage them with a rail, getting out of a chair without leaning on something is a struggle and drive an automatic car. I’m posting this to give you a bit of positivity really. I think my mum was in a similar situation to yourself when I was diagnosed thinking I would be in a wheelchair and in a lot worse position than I actually am now.
If you have any questions or would like a chat then please don’t hesitate to message me. Any advice I can give I would be very happy to do so.
Vis Unita Fortior
United Strength is StrongerCharlieParticipantPosts: 0Joined: 23/11/2015January 8, 2020 at 1:34 am #184362Reply To: Becker muscular dystrophy
To any parent out there who is coping with a recent Becker diagnosis, I just wanted to assure you that not all of us are greatly affected by our conditions as we grow up. I wasn’t diagnosed until the age of 28, and am still ambulant at the age of 44. (I’m only starting to consider a scooter for longer distances, I still don’t even require a stick, despite receiving nagging to the contrary from concerned family)
The one positive to cling to is that BMD is so variable between different people, your child may be one of those lesser affected too, and if not, at least it’s not Duchenne!ranaldParticipantPosts: 747Joined: 05/09/2010
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