Byline Mnda Made Easy

Byline mnda

[Music] Tony worked for us which is a hospice for terminally ill unless this year and recognize the signs of motor neurons disease and so it was convinced that that's what was wrong with in but by the time we got diagnosis it was too late because everything that's all stopped working in his arms and some cool couldn't drive and so we couldn't go ahead and run me up my plan for retirement in a daze is for diagnosis there's always that hope that it's not going to be us if it's not going to be m and E but leading up to it you're still pretty scared of what even here so in some ways when the doctor tells you yes it is from MD then it's a bit of a relief or it was for us for me and for Tony but that's when the serious stuff starts that's when you have to sit down with the family that's when you have to tell people some people progress very quickly Tony fortunately didn't progress as quickly a son so we were able to do some things the best thing that happened to us as being grandparents but obviously is not here to see that he knew he knew about it he knew that Katie was pregnant and he found out they divided the social inspector we had lots of help from friends and we had to adapt the house and the financial strain obviously on the family was a lot so I was working like I couldn't give up my job to be his carer and Tony did work quite a lot because he was in the job he was they were very understanding and made lots of changes so that he could still work as long as he wanted to but building work Carl had to change just about everything I had to change doors and here that everything you can think I've had to change but it had to change fast because if it doesn't change fast you've changed and you've gone on to the next stage before you can use it so the one thing you have to do is vote in areas that disease is that you have to think do I need that yes do it as a family the way we got through it we were all very positive we were very open and if we have any questions we would just ask the question and just answer it as honestly as we could and we found that it was easier to face things when you know what's happening or if you face you know you actually approach them and and deal with everything that happens at the time my children were very very supportive they were always there for me we had really good friends that were there for us you cannot do this alone because you don't get the support you need from elsewhere it really is your friends and your family his sense of humor was amazing and his positivity it kept us all going I think if Tony had been different it would have been a lot lot harder but a year ago when he died I was I actually spoke on the radio and we made a little film for his funeral which was wonderful because we talked about is feeling more a lot we talked about what he would like what I would like he did he wanted it to be a celebration so that's what we did and we did it while he was alive so when I was going through that period it wasn't as painful because I knew what was coming I knew everything that I was doing was what he wanted so it it was good when Tony died it was odd if you were in limbo you didn't know whether to that's it you just stopped doing everything you did before and forge a new life or whether I was to carry on with M&D whether I even wanted to whether I wanted to be around people with it for actually yes I do because the impact on your family and your whole life and is huge and so the more people that know about this the more people that put the hand in their pockets to raise money anything we can do to get it out there is just so important to me now that you know our family really should go through what we've been through it's um it's a tough one and I know lots of people that have gone through it and it's tough on them too so we're all trying to do our best to keep people knowing what this horrible disease does and how it can impact your family [Music]