Is it beneficial moving: I am newly... - Multiple System A...

Multiple System Atrophy Trust

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Is it beneficial moving

Patxx profile image
14 Replies

I am newly diagnosed but thinking of moving from our 3 bed , two story Victorian house to something which may be more suitable later on. What have people found most beneficial to them and have they had adaptations made?

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Patxx profile image
Patxx
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14 Replies
Yanno profile image
Yanno

Hello Pat. Welcome but as always, so sorry you need to be here. Jackie and I were lucky to already be in a bungalow when she was diagnosed. Ironically we had thought of moving many times but love this part of our village so much.

The main adaptations that we’ve done is 1) putting a covered wheelchair ramp to the front of the house - so much better for getting in and out of the car. 2) fitting a wet room, with a sliding door for more space 3) building a covered area outside with overhead heaters to meet friends in a safe (covid) environment.

We were again lucky in the existing design of the house but never underestimate the space you may need for wheelchairs and other equipment.

Good luck, Take care, Ian

Patxx profile image
Patxx in reply to Yanno

Thank you for the benefit of your experience, I am just trying to make it easy for the future and plan ahead .I appreciate your kind response.

FredaE profile image
FredaE in reply to Yanno

Access is essential,

internal and external.

when Victor had to be hoisted we could could get him out o bed into a wheel chair and push him into the living room for a change of view but we could not get the hoist through the door to get him into a comfortable chair

I thought about enlarging the doorway but i doubt if we could have got it finished before he died.

everyone is different and it is so hard to guess what you will need and for how long. Sorry it that is not helpful but this damned disease never is

Patxx profile image
Patxx in reply to FredaE

I appreciate your comments thank you and best wishes Pat

Westcott profile image
Westcott

Hi Pat. We've got a large wetroom which we'd never be able to manage without. I'd suggest though that you get the OTs to visit and give you the once-over and they will give you all the input you need to future- proof your house. Regards

Hi, sorry and glad you're here and asking questions.Sue and I had a town house and in time had both a wet room and a lift installed so Sue could get up to the first floor.

This was fine for a few years, but eventually Sue had to have a hospital bed at that point we had a choice of turning rooms downstairs into and bed and a new wet room or get a bungalow.

I spent a good 6 months finding the one I wanted in the area I needed, which is perfect.

Try to be cold and write down your expected needs both physical but also emotional ( area, view, neighborhood, family, carers). This will become your wish list and take time to find what you want.

Good luck.

Paul

Patxx profile image
Patxx in reply to Paul_and_Sue_Wood

Thank you Paul.We are very attached to our current home but deep down I know it won’t be suitable even if adaptations are made . I am in two minds to if we stay local, I get upset easily and don’t know if I could emotionally deal with the people I know (not necessarily friends but those who have known me a long time , that they are acquainted) . I get upset with sympathy easily, but then I want my husband to be comfortable when he is on his own. Does it get easier to accept? Pat

Redjune1 profile image
Redjune1

Hi Pat we’re in a similar situation at the moment. In September we had a shower room fitted so that Phil would be able to manage better. We had no room for a wet room so it was the best we could do. At that point he was newly diagnosed and we didn’t know how bad things were going to get. By November we knew that we needed a bungalow or ground floor flat and that we needed to do something about it fairly quickly. So So now we’re in the process of trying to get something right across the country in greater Manchester ne’er to my daughter. The thought of actually doing the move scares me but we need to do it and the sooner the better.

Diane831 profile image
Diane831 in reply to Redjune1

Well when you get here you will be very welcome to come to our Greater Manchester MSA support group meetings. Either online or hopefully in person soon!! Happy home hunting. Diane

Redjune1 profile image
Redjune1 in reply to Diane831

Hi Diane I hadn’t thought about being able to actually get to meetings when we move. Where we live at the moment in Lincolnshire the meetings are too far away, so it would be good if I could attend a meeting.

Diane831 profile image
Diane831

We managed to stay in our home with a through floor lift and adaptations to change the bathroom to a wet room and a few door widenings. I am still here and because we planned it and were able to afford it we made nice choices and it isn’t all clinical even though Geoff isn’t still with us. I know, though, that for many others getting a bungalow and having some changes done early can be a real help but getting your local independent living team in for an assessment is really helpful.

You are doing a really brave thing considering it all early. Plan for the worst and hope for the best, and live your best life as it is now, trying not to regret what you might have hoped for.

Diane x

Patxx profile image
Patxx in reply to Diane831

Thank you Diane .

Derkie54 profile image
Derkie54

Hello Pat,

We moved to a bungalow for my wife very reluctantly as we were happy with the house that we had been in for 26 years.

It was however the right thing to do, L has no mobility now so the lack of stairs is a bonus.

It goes without saying that as time goes by we would be adjusting to our "new normal" and doing less so being close to shops was a priority. I'm glad we did this as we go out with the wheelchair to the local shops and parks most days.

Size wise get as much room as you can afford as the mobility aids that L has take up a lot of space.

We had a double bed, but now L has a hospital type profiling bed and my own bed is next to it so it might be wise to check that a bedroom is big enough to do this if you needed to.

We have made a few changes and I'm pleased we moved when we did while we still had the energy and motivation to get things done.

We've a walk in shower but I'm mulling over whether or not to turn it into a wet room next.

It's up to you really whether you move or not, but I can say we didn't want to but are now glad we did.

Take Care and keep smiling when you can.

Regards

Derek

Patxx profile image
Patxx in reply to Derkie54

Thank you Derek. You have summed up our feelings but it is also deciding where to move too that is a dilemma! But that you for sharing your journey . Best wishes Pat

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