Great News that MSA Trust is on Health Unlocked

Great to see MSA on Health Unlocked. I have followed PSP and Parkinson's for some time and wanted a community for MSA.

I am Ian, Yanno as I call myself when travelling because people in some countries find it difficult to pronounce/remember 'Ian'.

I am husband and full time carer for Jackie or Jax. I delight in caring for her and whilst it's not the retirement we planned, far from it, we are at least together every day. It's been tough at times, very tough, but we cope and that's pretty good I think in the circumstances.

I really hope a number of people sign up to this community so we can keep in touch in the same way that the folks in the PSP community do.

9 Replies

  • Hi Ian

    this is Paul, living with MSA, Multiple System Atrophy for I don't know how long. Diagnosed in 2014 after 3 years of being passed around various doctors. Great to see this site and hoping to build a community hear quickly

  • Hello Paul - good to see you here. Love the photo, I should get one but this is really about Jackie as you know. Hopefully once the word goes out we will see more join the site.

    Enjoy the weekend. Ian

  • Hi Ian I'm Mick like Paul don't know how long my MSA has been effecting me diagnosed Feb 2015 on my birthday. Since then I've been retired unfit for work and gone from walking with a cane to using a wheelchair and now trying to get changes done to house to help me! But I'm ok welcome I wondered why MSA didn't have a community here.

  • Hello Mick, what a day to be diagnosed! We remember the day well when Jax received her diagnosis in Sept 2015 - we cried a little, kicked the cat (if only we had one to kick), and then said to hell with it we are going to make every day we went for a walk!

    I'm so glad that MSA has now got a community of it's own - As I said in my original post, I have followed the folks in the PSP and Parkinson's community for some time - we have found some very useful tips and coping strategies there; I just hope we can get the same going for MSA.

    What are you doing to the house Mick. We have created a wet room but other than that not needed to do a lot so far. I know Genesis1 (see above) has done a number of modifications to his house and may have some suggestions if you need advice.

  • Hi Ian I am having a ramp fitted the front so hopefully I will be more mobile get my electric wheelchair out instead of relying on others to push me around. Also need wet room toilet and bedroom downstairs all ongoing!

  • hello Mick, It sounds as if you are getting quite a lot of work done. We were very pleased with our wet room but I have to say it took an absolute age to get the job finished. Luckily Jax and I were away for some of the time and just left the builders to it.

    It sounds as if you are fitting a permanent ramp but through our local OT support and following the usual internet trail, we have found a supplier of portable folding ramps at much reduced prices. We use one at the front door and one inside as well. Good luck with the work.

  • Hello Ian the portable ramp is the cheaper option but as I am alone most of the day no good for me so permanent it is! I'm anticipating it (wet room etc) taking a while so getting done before I really need it.

  • Hello Mick. I think it sensible to start as early as you can with the wet room - it took far longer than we thought to get the job finished. Also I am sure you know but if you are completely refitting the room spend as much time as you can thinking about the design and how the wet room "will work". Most things we got right but one thing we wished we had the sink nearer to the loo so Jackie was able to wash her hands more easily - never even thought before we had the changes done!

  • Thanks for the response Ian and will discuss with my builder my layout requirements thank you.

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