Hi all, Just interested in knowing who is still working & if not when did you have to stop? just looking for advice on what to do next after having to stop work due to it getting too much of a struggle. He was working on a building site & it was getting difficult for him everyday. He has to use a stick to get around now. He struggles with his balance, & tripping up and he's often fallen over. He was signed off for two months at the start of august & that's when he decided he wouldn't be returning to work. We have a form for PIP (personal independence payment) just getting round to it. my partner is 24 years old, diagnosed 2 years ago even though he noticed changes in his walking a year or so before. Would like to hear other people's experiences? Thanks. Nicole.

HI NICOLE. SORRY TO READ ABOUT YOUR PARTNER HAVING TO STOP WORKING. FROM WHAT I'VE LEARNED FROM THIS SITE IS THAT THIS CONDITION AFFECTS EVERYONE DIFFERENTLY. I AM 46 WAS DIAGNOSED IN 2010 AND HAD NOTICED SOMETHING WAS WRONG ABOUT 5 YEARS BEFORE. I OWN A SMALL HANDYMAN BUSINESS WITH ONE EMPLOYEE AND AM PHYSICALLY STILL ABLE TO GET AROUND AND WORK. AS DIFFICULT AS IT GETS FOR ME TO JUST SIMPLY WALK, I CONTINUE TO PUSH MYSELF THROUGH IT. MY ONE ADVICE FOR HIM IS TO KEEP MOVING. TO STOP BEING MOBILE IS ONE OF THE WORST THING WE CAN DO. I INDERSTAND THAT WORKING AT A CONSTRUCTION SITE WOULD BE VERY DIFFICULT TO GET AROUND BECAUSE OF ALL THE DIFFERENT TERRAIN..KEEP POSITIVE ATTITUDE, AND KEEP THE BODY MOVING.GOOD LUCK

Hi everyone. I totally agree with Arod. I'm Josep, from Barcelona. When I knew I was affected by adrenomyeloneuropathy I decided to work as well and as much as I could. I'm 42 and I have no intention to stop working and even less to stop moving. I go to the gym twice a week. In my opinion the best thing we can do is keep moving because I know there are people all over the world studying our illness and one day an effective medication would be found. I am a positive person and convinced that positivie attitude helps you and your environment.

Hi. Thanks for your messages. I totally agree about keeping mobile as its no good for him if he doesn't do his exercises as he will feel more stiff than he normally does. He doesnt't want to stop work, but he had no choice but to stop the work he was doing, it wasn't safe at all. We have choices and we are taking things slowly so we decide the best one. Thanks for the advice. Take care

I go to school full time. Keep moving as much as he can, but find a job that will fit him and not make it too difficult.. It's progressive and it will get worse. There isn't anything stopping it. I'm about to try that amours here soon and walk more and rehabilitate as much as possible to see if it helps anything at all. I am 25 years old and I use forearm crutches and a wheelchair

I think the key word here is adaptation. I'm a graphic designer and for the time being I've decided to work from home. It's worth sharing with you all that I was on the receiving end of disability discrimination by my previous employer (10+ years). The reason I mention this is that I decided to get an employment law solicitor behind me - faced with a tribunal they settled out of court. I'd have rather made an example of them in court but sadly you have to follow a certain process. On a positive note I'm far happier now as I get to produce the kind of work that counts, check me out at: www.behance.net/heyhupla

Hi Nicole, My Husband is 48 and still works, although he has a job, he can do from home on the computer for most of it. Everyone is different and there are over 600 different mutations of this disease. I highly recomend that he stay as positive as possible and he young, so pick a career that doesn't require a lot of physical activity. My hubby went from using a cane to a walker and now he uses a scooter for going to the store and getting around outside. It was a hard decision for him to go to a scooter, but it is less painful for him and he can do a lot more. Keep encouraging him to do as much as possible and stay by his side, everything will work out. If you would every like to talk, I'd be happy to answer as much as possible. We will be celebrating our 25th anniversary next year and I wouldn't trade anything for those wonderful years! God Bless, Deb

Thanks for sharing this! However self conscious I am about my gait, I still work and I still make a point to get around with my daughter. I have taken a position, and I bet ur partner can do the same, that uses transferable skills from the construction site (like scheduling, estimating, admin, permits, purchasing, union responsibilities, etc). The only concern I have there is that I can sit at a desk for eight hours and I get pretty stiff and tight when I do get up. I agree with all the advice--keep moving! Good luck and please let us know how it goes.

I agree that you gotta keep moving but don't push yourself too hard, know your limits. I worked a physically demanding job for a couple years after diagnoses and really beat myself down. And then I stopped moving and fell apart even more. I recommend doing a little every single day. Too much in one day over stresses my nervous system and negatively impacts me for up to a couple days. I'm 28 year old male and have had issues walking since 23. Good luck everyone.

Hi everyone. Thanks for your replies. My partner is always keeping active. He always does his exercises and we go for walks but he has to use his stick. His job was physically tiring I still can't believe he lasted as long as he did after his diagnosis! He was feelino the strain everyday after work but he still pushed his self to carry on and now thinking about it I think he pushed his self way too hard! That's my partner though, he's not a defeatest! It was bringing him down his job not just physically but mentally and it was stressing him out! He had no choice but to stop but he really didn't want to. While he's been out of work I think it's lowered his stress levels massively and he's got the time to give his self a workout! We are still discussing what will happen in the very near future! And thanks again for everyones advice. Great knowing there's others who are there to help and I will give an update very soon ! Take care!