How to deal with a deteriorating medical condition and keep a fabulous home

As you might know from earlier posts, my husband, Mr Wheel Chic Home (aka Mr Wobblelegs) has Primary Progressive Multiple Sclerosis.

This year is the 10th anniversary of our wedding, and not long after, the 10th anniversary of his MS diagnosis. It’s been three years since I started the blog so I thought I’d share a little about how his condition has changed in those years and how we’re dealing with it in the home, the changes that we’re continuing to make and how we’re conscious of changes we will need to make in future.

So, what’s changed and how have we dealt with it?  

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When we met twelve and half years ago, he was walking without any real problem. Perhaps slightly wobbly and he fell over on our third date and again a couple of months later. We just presumed he was a clumsy and his left leg that he broke a couple of years earlier was still weak. Luckily for him I’m not a great walker or hiker so walking didn’t really feature in our lives too much!

When we went on our first trip abroad to Venice we did have to take frequent breaks as he complained of his legs being tired and heavy but it was December and any excuse to stop for a hot chocolate!

He started going to the gym and worked with a personal trainer to strengthen his left leg and get fitter generally. His balance appeared off but that was all. We didn’t think too much about it for the next couple of years, we got married, bought a house together and after a couple more falls and his restless legs getting more restless, he went to the hospital and had an MRI scan.

The preliminary diagnosis, the week before Christmas 2009, was Primary Progressive Multiple Sclerosis. The full diagnosis was a couple of months later after more invasive tests.

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The house we lived in was a small traditional two-bedroom, bay fronted Victorian semi-detached house.  It had a narrow, steep stairwell, additional steps up into the bedroom and two steps down into the bathroom.  It was sufficient for a while, we had one handrail up the stairs, then we added another one for him to use.  

We positioned the furniture so that he was able to ‘furniture surf’ his way through the house, there was always something to hang onto.  

In 2010, whilst on holiday in Cornwall with friends, he was struggling to walk long distances and our friends bought him a walking stick. At first I was furious but it helped a lot and he used a stick for next few years.

He received an NHS wheelchair and we first used that in 2014 on holiday in Washington, DC.

He started to struggle with the stairs at home, and started to fall down them, a stairlift wouldn’t help so we put the house on the market and looked for a bungalow.  

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When we moved in here he was using a wheelchair for longer trips outside of the house and we realised we’d have to start adapting things for him. The first job was to widen the bathroom door so the chair could get in. Then we added grab rails to the front of the house, then we added the grab rails inside the house.

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He got his spangly new wheelchair customised for him by RGK and this allowed us to travel without worry.  It’s also small enough to squeeze through our narrow doors at home.  

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We added bath boards to the bathroom to make showering easy whilst sitting down, and we’ve moved furniture out of the way to make space for the chair.  We’ve also recently had the garden made accessible. And in amongst all this, we’ve tried to maintain a fabulous home without looking like a hospital.  

But what’s next for us?  Well, he’s in the chair pretty much full time now, so the house has to move with that.  We’ve done little things, like move the crockery down low so he can reach, sold rugs that cause issues with the chair, we are buying a new sofa that’s easier for him to get in and out of.  

 

We know that his condition will continue to progress and it’s possible we’ll need more grab rails, we will build a ramp outside the front door, we’ll have to convert the bathroom to a wetroom, we may even need a hoist or an electric profiling bed.  There’s lots of great ideas out there for beds, and hoists that are almost invisible so I know we’ll be able to find something if we need to.  

Our #inclusivechic hashtag has some great examples of profiling beds, hoists, wetrooms and accessible bathing that shows me we’ll be able to find.

When we bought our house it came with (now expired) planning permission for a large kitchen diner extension.

We are seriously considering rescurrecting it so we can get a wheelchair friendly kitchen with rise and fall worktops, and we will end up with a larger bedroom and an ensuite. The thought of the build fills me with a little horror, we can’t move to a friend’s or family’s house, due to the bathing situation.

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Wheelchair accessible properties for rental are few and far between and the upheaval of that is a challenge for his situation.

When thinking of future proofing your home you need to think worst case scenario, as painful as that sounds.  I don’t want a hoist in my home, and I know he doesn’t want to use one, but if that’s what we need to stay at home and be independent then that’s what we do.

Think ahead, how do you live in your home now, and how will you need to live in it in future? What needs will you have? Plan it carefully, perhaps you have to knock down a wall to make more space in your bedroom, perhaps you need to relocate a door to help with access. It might be useful to speak to an occupational therapist and an architect to help design your vision.

Put up grab rails where you need them. Paint your grab rails or your hoist a fabulous colour, make it a statement or make it blend in. The choice is yours! Be open, and think creatively.

Here, Pati Robins has painted her stair lift – it blends in beautifully with the decor in the room. Don’t be afraid of the adaptations, embrace them as Pati has done.

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Photo Credit: Pati Robins

In our home, we’re looking at the extension as giving us the amount of space we need for the chair to get around. It will allow us to plan a wheelchair friendly, inclusive kitchen.  We will be able to plan where we have grab rails, have all the doors widened and get wooden floors throughout so he can whizz around, doing handbrake turns in the kitchen!

Whatever we decide to do, you can be sure I’ll share my ideas and progress here, in the hope it’ll help someone else get inspiration.

What ideas do you have for future proofing your home?  Let me know!        

4 thoughts on “How to deal with a deteriorating medical condition and keep a fabulous home

  1. I’m at that age where I’m beginning to look around my home and pre-empt necessary changes as this is where I want to stay for as long as possible.
    Can I just ask if the bath boards are secured and if they are, how?

    1. Hi Lynne. The boards are secured with a fixing underneath that you tighten a screw and it pushes against the wall of the bath on each side for stability. They need to be tightened regularly but they can also be removed for easy cleaning underneath.
      They aren’t permanently fixed in which is nice if you have a visitor who wants to use the bath. We then have a shower curtain and fold it onto the board to stop the water escaping. Thanks! Vicki

  2. Lynne, I arrived here via a YouTube rabbit warren —

    A former coworker, also a MS patient, and her husband, a builder, took an innovative (but ancient!) approach to the challenge of creating a comfortable home that could accommodate a large motorized wheelchair. They gutted the interior of a large home, removing most of the walls and replacing them with Grecian pillars and boxed beams. The flooring was replaced with sleek marbleized commercial tile. And then they hung draperies on rings to define (and conceal) areas. The decorative accessories were tongue-in-cheek, e.g., the bust of Caesar wore a ball hat and sunglasses, and the welcome mat was in Graeco-Roman font, and it didn’t do to look too closely at the Pompeian frieze in the roll-in shower… Their grandkids loved it: lots of room for indoor trike riding!

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