scared

@julie– wrote:

My first time on here. I need some help please. I was diagnosed about 10 years ago but chose stupidly to ignore it as I thought they were wrong. Now I can not go out as it terrifies me I may fall and cannot get back up again. I struggle to walk even in my own home. I have trapped myself and am scared to asleep help now. I don’t know what to do.

Goodness Julie.

We are so glad you have found our forum.

You do seem to be having a very tough time. You do sound as if you need some advice
from people who understand your condition. The Muscular Dystrophy Campaign have a network
of Regional Advisors who are experts in all aspects of MD. They will visit people in
their own home if necessary.

Possibly the best place to start is your GP to get referred to an MD consultant but more importantly
if you are worried about falling and mobility issues to get immediate help from local
Services like Occupational Therapy and Physiotherapy. I was amazed that there is a “Falls Prevention Service” who
visited me in just a few days.

Feel free to ask us any questions all but most importantly find a way to ease your fear
of falling and hurting yourself.

Sorry you have these problems.

Julie, where abouts in the country are you?

hi, Julie (and happy new year)

I bet you look at the last 10 years and wonder where the hell it went. and you get too comfortable in your own bubble. some people find it useful to talk to someone. being diagnosed with some like md is huge, you go thru the stages of grief, denial, Anger, Bargaining, Depression before you find a way to accept and work with what you’ve got. I have always felt strongly that after they diagnose you with MD they should send you for counselling rather than just sending you off into the world.

I have never 100% accepted my MD and the deteriation but I have got to a point in my life that I am more accepting to making practical changes that make life easier. Like yourself I started avoiding going out as I couldnt walk far, and feared falling.y To solve that I bought a small electric scooter that fits in the boot of my car. I wont lie it was nervy to begin with but I got over that the first day I was able to cover a shopping mall end to end. the scooter solved soo many issues included the issue (fear)with getting to toilet in time.

I got a riser power chair via the Employment Access to work system to allow me to carry on working. this is via the job center. they provide funding for all kinds of workplace improvements, ie power chairs, special desk/chairs, IT tech and building work.

The first step of asking for help is really hard but is worth it even to make your home safer and more comfortable. As your GP to refer you to an Occupational Therapist to have a look and see if they have any ideas to reduce falls in the house. it may just mean a few grab bars in the right place particular around the bathroom.

I also have a outdoor powerchair from NHS wheelchair services that has kerb climber so I can go just about anywhere locally.

the MD care adviser nurses all really helpful, I know mine has a good ear…. unlike other nurses they truly understand what its like to live with MD .. PM one of our Moderators your area and I am sure they will get you a number. the MD conference are really good places to meet as well.

PM if you need to talk. its easy to simply tell you to run out and buy this or that but personally I needed to be ready in my own head before I got certain things.

take care

Cat

Hi Julie

Lots of good advice from everyone, can’t add much to it but joining this site does mean you’ve made a step in the right direction. You’ll find support out there, emotionally and physically but you do have to seek it out, your GP will advise and contact the various groups to start the ball rolling. Making you feel safe is the most important thing now, inside and outside the home, lots to deal with all at once but I’m sure you’ll find help here.

take care
Alun