September 6, 2022 at 10:51 pm #202703New to the Group
Hi, my names Mandy and I have a 31 year old with Beckers disease. Diagnosed at 17, ended his golf “career” plans. Also suffers with social anxiety disorder so rarely goes out the house. No friends, no job. We got a dog 5 years ago and that has helped but still no nearer to him getting a job and getting on with life sadly.
Since the pandemic he has not seen anyone or had any follow up on his condition. He is beginning to struggle more with balance and walking too far. I’m trying to get him to do some kind of exercise but the thought of it gives him anxiety attacks.
I’ve been researching any facilities that are available to people with his condition. Specialists who might know of any treatments available or services available to him. Does anyone have experience of this?mandydbaileyParticipantPosts: 0Joined: 10/06/2020September 7, 2022 at 6:39 pm #202704Reply To: New to the Group
Hi Mandy. My name is Emily. Sorry to hear of your struggles with you and your son I am 38 and was diagnosed with lgmd 5 years ago. I too was going to do golf as a career until injury took that away. I still play golf however it does get harder each year physically. I would be more than happy to speak with your son and try help anyway I can. Trying to deal with things mentally is so difficult. I also run my own business so know what employers are looking for with regards to getting employed. I would be more than happy to help with this if either of you want to chat then let me knowEms15ParticipantPosts: 0Joined: 31/07/2018September 10, 2022 at 2:35 am #202708Reply To: New to the Group
Hi Mandy. My name is Emily. Sorry to hear of your struggles with you and your son I am 38 and was diagnosed with lgmd 5 years ago. I too was going to do golf as a career until injury took that away. I still play golf however it does get harder each year physically. I would be more than happy to speak with your son and try help anyway I can. Trying to deal with things mentally is so difficult. I also run my own business so know what employers are looking for with regards to getting employed. I would be more than happy to help with this if either of you want to chat then let me know
You are a really nice person, good on you!ranaldParticipantPosts: 747Joined: 05/09/2010September 16, 2022 at 7:26 pm #202720Reply To: New to the Group
He could take up Golf as a disability sport. many sports people at Olympic level have crossed from abled bodied to para sports for one reason or another. MD needn’t be end of his sporting dreams even if it meant exploring different sports as well as golf. theres para shooting, curling, Bowls, car racing.
What area do you stay in? England has a muscle centre of excellence.CatModeratorPosts: 1,002Joined: 20/09/2010September 29, 2022 at 12:47 pm #202735Reply To: New to the Group
Hello Mandy. What I read is a sad but sadly not uncommon story. The support I get from the Neuromuscular Centre in Winsford though has made a huge impact on my life, mainly on keeping me walking, although nowadays with increasing difficulty. They also, through all the other things that go on there, ensure that all who attend are not on their own. Of course we are all different, I have FHSD, the point being though, give them a try, ring them, ask for help and I am sure you will get it. If you cannot travel there for the reasons you have already indicated, there are some exercise routines they have put on Youtube. I have not tried them myself as I do my own thing, but got to be worth a look. They also have a very vibrant wheelchair basket ball team, to ad to the list of possible sports. May I also include crown green bowling. You can play with others or against yourself.
A balance problem may be from one of many places, so please do not assume it comes from MD. Do seek medical help here, there are a number of medications that can reduce the effects of being off balance, alongside good physio they can make a world of difference.
Over the years MD has lost me two careers, my ability to fly drones (mostly), and other things like many others. I have always tried to plan ahead. If one thing fails then what have I got to replace it with? That way I can keep my mind active, sooooo important, and try and keep the body going more quickly into decline.
Much of his future will lie in his own hands, and you are doing all the right things to help him. Try and find out, if you have not already, what he would like to do generally. What interests he may have, and perhaps where does he think he will be next year, in five years. All quite difficult, but with a plan you may get a more positive outcome. Incidentally what are his interests. Perhaps also if you cna give us an idea of where you live someone here may have een better things to add.
So many love songs, so little love.October 27, 2022 at 1:47 pm #202744Reply To: New to the Group
This is my first time using this forum. I have Beckers MD and was diagnosed at 12 (almost 40 years ago). Over the past 2 years I have noticed that my walking ability and range is diminishing quickly and being totally realistic I think I will need to start using a wheelchair, either part of full time. The realisation that this is clearly the case is frankly psychologically terrifying but I must do what is needed to ensure my overall quality of life and independence. Does anyone have any advice both practically and on a psychological point of view on making the transition from starting use a wheelchair for the first time, either as a full time or part time user. I do use a mobility scooter much more outside but this has been up to now on demand and when I think it is absolutely essential. Pride and social fears have definitely resulted in a number of falls – I guess I am just demonstrating the old adage of “Pride comes before a fall!”tjonlineParticipantPosts: 0Joined: 27/10/2022October 28, 2022 at 12:53 pm #202745Reply To: New to the Group
Hello and welcome to the forum. Your dilemma is 6 am not unusual in our community. I can think back when I was first ‘forced’ to use a mobility scooter. It was a huge step and a huge admission that the body is getting worse. On the other hand not only have I found it useful, but also entertaining. I have used it for lots of things including racing my grandchildren and Christmas shopping.
Using a wheelchair in my opinion is a different leap. May I also ask are you intending to use the wheelchair all the time, just outside or just inside? Are you looking for a power chair or a manual.
Whichever it may be, I was once offered some advice that has proved absolutely priceless. I was told to view my body as a battery in your car. The more you drain it with exercise, activities, even standing up, means that sometime it will go flat and you will end up in bed or even hospital. Thus anything you can do to stop the drain. A wheelchair is a good case in point. If you actually need the help with your walking, and clearly it was coming because you use a scooter, then in reality you have no choice, either now or sometime in the future. But you are doing so not just to save the battery but also to make sure you can get about without excess pain or discomfort. Remember though you will need to plan extensively for its use, especially in the house. I do not believe it is pride, but ore reluctance to move on to a new stage of your life as we all do. The “fall” though becomes a possibility or even a probability, if you do not use aids which are there to help you.
So many love songs, so little love.February 26, 2023 at 1:05 pm #202804Reply To: New to the Group
Well welcome Jess to this forum. Even if you dont want to talk about yourself you are here and you know where to get some help if you need it. However, vis a vis your job which y;ou say is hanging o;n by a thread have you asked Access to Work for support. They are there to ensure you can stay in work if you want to.
So many love songs, so little love.
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