Recently diagnosed

Welcome to the forum.

I too work in an office and can be a great environment to adapt around changing needs.

Have you heard of Access to WOrk. this is a GOV scheme that supports people to work by providing travel or workplace aids and adaptations. In my work. electric door closer have been provided. a wheelchair. and travel to work have been fully or part funded

I have been recently diagnosed as well but fortunately I’m a financial advisor with clints who work for the NHS, they are the best organisation I’ve come across for support for staff, so although it’s tough financially you will be fine. Good luck

Hi not really to sure where to start but my daughter is 22months old we was told on the 7th of July 2017 she has muscular dystrophy but had to have bloods done and sent off for checks they came back 21st of December she has congenital muscular dystrophy I am trying so hard to be strong but I can’t seem to be fo her I cry all the time can’t stop thinking about it but what hurts the up most is my perfect beautiful baby girl won’t ever be able to walk by the sound of it she can’t crawl do tummy time weight bare roll nothing I feel like I am greaving for a child that I won’t have now and trying to come to terms with our new path in life I just can’t stop thinking she won’t ever walk and it’s so heartbreaking because she now asks me “walk mummy walk” and she can’t well just thought I would share a small part of our life right now and try find other people with the same condition

Hi bufc,

I can understand your situation. I too was fit and enjoyed many sports until a weakness occurred in my right leg making it difficult to walk and manage stairs. Every person is different on its progression but it came as a bolt out of the blue. Having being under a consultant at Cambridge for the last two years, an initial diagnosis is that of Myofibrila Myopathy. I have just been referred to Newcastle for a second opinion. As this is a relatively new to me, if I can help in any way in managing your situation, with useful tips and advice, please let me know.
Tony

Hi I’m a 28 year old man recently diagnosed with fshd. Struggled for years physically and mentally in silence. I got the courage to seek help when meeting a special person although my negativity with life is taking its toll on her. I’m always angry with my worsening condition, I’m currently on the sick knowing I can’t go back to my physical job. I just don’t know how things are going to get better..i would be appreciative of any advice. Thanks

Cmc89… I was referred to Newcastle in December 2017 and had a full diagnosis within 2 months, hope that’s reassuring for ya as i know how difficult it can be not knowing. The guys up there are terrific so hold tight dude.

Hello and welcome Jack. I am sure you will find help and support here as I have done. I have had the effects of FHSD now for over fifteen years. I lost two jobs as a consequence and through retraining I am now a drone pilot. What I am trying to say to you is I can appreciate how dark it can be for you, and how bad you may think it can go but that are always alternatives you have to search for them. It is a struggle to live with the condition if you let it, and living with your condition can be so much easier if you have that “special person” on your side. Remember she would not be there if she did not want to be , and she would not be there if she did not want to help you. It takes a very special lady to take on that latter role. So embrace the help she can give you physically and mentally. Let her give you the support you clearly need and share your problems with her, it will help her to feel so much more part of your life instead of being shut out from some of it. Like it or not your FHSD is and will be part of you as mine is with me. after all this time it does still make me feel very down and dark from time to time as I get sick and tired of being sick and tired. But then again there are compensations. i have met many people I never would have done. I have found a new career. I can do two wheel turns on my scooter, and many other things. Along with many others on here, i am more than happy to help you with whatever questions you may have, most of us have been there before you. There is light at the end of the tunnel, you have to let your special person guide take you down towards it.

Hello BUFC. I have had just that experience. For me it was not too pleasant but that was just the hospital I worked for as they fought tooth and nail to stop me getting ill health retirement. Most are not like that. Your super ann scheme will depend on when you have joined the NHS and what decisions you have made since about your pension. For those who have been in under the ‘old’ scheme, you can retire on ill health will full pension which is usually around half your final salary. If you are not in the final salary scheme then I would urge you to contact NHS Pensions https://www.nhsbsa.nhs.uk/nhs-pensions, who can give you more detail. I would not contact HR as they will immediately flag you up as someone who may be leaving rather than someone who needs support. If you are in a union, talk to your rep and get support from them. Talk to Occy Health and get them to tell you their views about you being able to continue working as it is their view that will be crucial come the time for a pension application. Again do not talk to them about medical retirement just ask about your medical future and work. Ask NHS Pensions about applying for a pension too and how you go about it. Needless to say there will be huge forms to fill out asking for all kinds of information and remember it will never be enough.There will also be other questions and need for more information, but getting Occy health on your side will limit that for you. Mine took two years to get approved. I cannot say if it is normal or not, but be prepared for it taking a long time. Talk to those people I have mentioned and you should then have a much better idea as to what you can do. If not please come back here and we can try and help as well.
For me it was the best thing that has happened to me. The simple removal of stress was almost palpable and contributed to improving my health at the time.

Mike