Old 01-10-2019, 12:08 PM #1 (permalink)
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Default Advice for home renovations or adaptations

Hello: My husband was recently diagnosed and we are meeting with some people next week about renovating or adapting our home. We know we need to widen doorways and make his living space wheelchair accessible, but I'm hoping to tap into the knowledge of people here.

Tell us what we don't know -- what should we be thinking in terms of building or modifying a space? We have a home visit set up, too. If there are good websites or resources, please share those. I'll be happy to share what we learn next week, too.

The hope is that he will be able to live and work comfortably in our home for as long as possible. He is still able to walk but has limb onset (legs). Thank you.
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Old 01-10-2019, 02:26 PM #2 (permalink)
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Default Re: Advice for home renovations or adaptations

Hi, my name is James and it sounds like I'm at the stage as your husband and facing the same issues. I just added a tall toilet and some handles for the shower. But, there will need to be some serious modifications done before I become completely unable to use my legs. My wife can't live me as a dead weight. I'll need mechanical help getting out of bed, into the toilet, and into the tub. A lift will help but it can't do everything. My wife says she can do bed baths and help with bed pans, but if really like to put that off as long as possible.

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Old 01-10-2019, 03:56 PM #3 (permalink)
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Default Re: Advice for home renovations or adaptations

There have been a lot of threads on bathroom remodeling. Here is a recent one on portable showers: Portable shower for downstairs

Remodeling depends on your budget and on anticipated rate of progression. Some people may decide that moving to a one story house or condo with an accessible layout is the best option for them.

At the very least, you need a way of getting a wheelchair to the main living area. Often this requires construction of a ramp or placement of a portable ramp if there is only a small step. If the main living area is on an upper floor, then an elevator may be necessary.

Doorways need to be widened preferably greater than 32 (36 is ideal). Offset hinges are a convenient way to add at least 1 1/2 to any doorway space and may avoid the need to reconstruct the door frame.

Usually the bathroom needs some remodeling unless you go the portable shower route. My remodel involved construction of a wheelchair ramp, reworking the entrance to the master bedroom to allow easy passage of the wheelchair, and remodeling the master bathroom. I chose a contractor who was familiar with ADA guidelines.

In the bathroom, we put in a tall toilet with a bidet seat (requires an electrical outlet in the wall next to the toilet), grab bars on both sides of the toilet, a roll in shower with grab bars, and a sink that the wheelchair could pull up to. We probably did more remodeling than most, but I am also slow progressing.

Some people add ceiling tracts. Again, it depends on budget and current layout of the house.

Some people can probably get by with a portable shower and widening a few doorways for much less cost.
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Old 01-10-2019, 04:18 PM #4 (permalink)
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Default Re: Advice for home renovations or adaptations

Here are a few disjointed thoughts.

He will have a wheelchair sooner or later. I found that being able to get out of the house was very important to my mental well being once I started using the wheelchair. Practical wheelchair access to the outside of the house is very important.

Where will the wheelchair van park? Where will the wheelchair unload out of it (typically a ramp or lift on the passenger side or rear of the vehicle)? You will need about 8 feet of space beside/behind the vehicle, depending on what solution you go with.

Is the garage tall enough for a wheelchair vehicle? Loading and unloading in Rhode Island winters would be much nicer in a garage.

Will there be access from the house to neighborhood sidewalks? I love going for wheelchair walks. I also live near a bus stop and it is wonderful to be able to take the public bus (free and runs every 15 to 30 minutes where I live).

He will be spending a lot of time indoors. A house that is adequately lit for normal use may be insufficiently lit for someone who spends a lot of time there. Is there adequate natural light? If not, can the existing light be enhanced?

Remove all trip hazards now! Falls are to be avoided. They can cause serious injury and death. Remove the trip hazards to reduce the likelihood of a fall.

If he will be spending time alone in the house, you might want to consider automated systems for lights, drapes, etc.

Steve
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Old 01-10-2019, 06:07 PM #5 (permalink)
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Default Re: Advice for home renovations or adaptations

Wow -- these are great suggestions -- thank you so much. Exactly what I was looking for.

Keep 'em coming...
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Old 01-10-2019, 09:48 PM #6 (permalink)
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Default Re: Advice for home renovations or adaptations

More random thoughts --

Wherever you park the power chair is where it will need to charge overnight, with a cable from the charging port to the power outlet during that time.

If you have thick or plush carpet, pushing a Hoyer may be difficult. Nor do you want to push it over different levels of flooring -- it's a rough ride. Thresholds can be difficult also. So you may end up using a room that you did not plan on as the transfer station. But thresholds are also uncomfortable in shower chairs.

Consider turning radii and space for transfers as well as doorway width, e.g. bringing the Hoyer to and away from the bed and wheelchair.

Intolerance of cold and heat can occur as ALS progresses. Make sure there is adequate temperature control in the rooms he will spend the most time in, which preferably have windows he can leverage in a wheelchair when it's too cold/snowy to go out.
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Old 01-10-2019, 11:32 PM #7 (permalink)
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Default Re: Advice for home renovations or adaptations

Things we did at first: raised toilet seats, shower bars, toilet riser, taller chairs that were easier to get in and out of, a spring loaded seat that pushed him out of chairs, power lift lounger, a handle to help Get in and out of bed, then portable ramps to get outside in backyard and out of porch. We had a few steps in our house and at first we built them into smaller steps that were easier for him to negotiate and when that no longer worked had a nice wooden ramp to match our floor built.

We started the bathroom Reno once he was using a walker- we knocked out a wall to add 2ft of space in the smaller existing bathroom and put in a barrier free shower. Also added a bidet which is a huge help. I didn’t put a fully accessible vanity in because I needed storage space But we made due. We got adjustable split beds which is helpful. The only doorway we had to widen was the bathroom, he’s been able to fit in every other door.

You will need a van or else he will be stuck at home so be prepared for that!
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Old 01-11-2019, 07:36 AM #8 (permalink)
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Default Re: Advice for home renovations or adaptations

My parents have carpeting in the living room which is where we put the hospital bed so Dad can be in the center of everything. It was hard to push the Hoyer on carpeting. So we cut a placed plywood on top of the carpeting in the area we would need to move the lift around. We taped the plywood together, then covered it with vinyl flooring. It doesn't look half bad and gives us a hard surface to move the lift around on.
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Old 01-11-2019, 06:07 PM #9 (permalink)
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Default Re: Advice for home renovations or adaptations

ADA regulations do not apply to private homes unless that home also houses some type of business such as a babysitting service or home based business. State, city, and county building codes WILL apply and they may be based on ADA regulations as well as having other regulations such as distance from lot lines, etc. So the place to start is to investigate any regulations that will apply to your building permit. Even though ADA regs don't specifically apply to your home, take the time to review them for information on space and safety features you may not have considered.
I have a section of my website on home accessibility renovations you might want to check out. ALS Patient Care From Both Sides: Remodeling
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Old 01-11-2019, 10:51 PM #10 (permalink)
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Default Re: Advice for home renovations or adaptations

I sold my small condo and moved to a large one. The first thing I did was put in new high toilets in all bathrooms. I also put on a bidet toilet seat on the one in my master bathroom and use it all the time. It's wonderful and no more toilet paper needed.

It all depends on your budget, rate of progression, and desire to remain where you are or move. I ended up gutting my master bathroom because it was huge and there was much wasted space. Now I have a 5 x 4 roll in shower grab bars everywhere and a very high sink so, eventually, my PWC can roll right up to the sink. The only thing I haven't done is installed a lift system. I widened all the doors and put an e-foot door into my bathroom with the intent of running a track lift system from my bed into the shower or toilet. Everything is set up and they can install it in a couple of days, when needed.

Something that I got early on was a lift chair. It's a Golden Cloud and I've loved it for two years now. It's so comfy I have to fight the dog for my place on it.

I removed all the slippery tile and put in tile that was safer. I can't overemphasize the need for grab bars.

I'm beginning to automate things like the thermostat and lights. Night lights are very important when we are still walking.

If you do a search, you'll see lots of pictures and suggestions.

If he's a vet, you'll get lots of financial help. If he isn't, save all receipts because medical expenses for capital improvements for modifications are deductible minus the appreciation on the house from their installation.
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Old 01-12-2019, 06:59 AM #11 (permalink)
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Default Re: Advice for home renovations or adaptations

Is pals a veteran, if so there are grants to help renovate.

Things I use and find helpful

Bidet toilet seat

Ceiling lift with tracking from bed to toilet, to shower,a straight stretch for dropping into PWC

A nice sunny window for morning times bird watching,reading , texting etc

A window sill or small table top for tissues,phone,books,spit can,baby monitor,other personal items

Good luck luck

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Old 01-12-2019, 10:52 AM #12 (permalink)
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Default Re: Advice for home renovations or adaptations

Your ALS Association may have an accessibility expert who can come out and advise you about practical needs you should consider. My doctor advised for that early and the sent someone. She was very budget conscious and advised only what was absolutely necessary but knowledgeable so could tell us about what not to do (stairlift and elevator) as well as alternative solutions (sliding tub chairs versus roll-in shower).

I think you’ll notice no one has talked about extensively remodeling the kitchen. I’ve decided against that in lieu of just making small adaptations to extend the usability as long as possible. After leg weakness you’ll probably experience hand and arm weakness so cooking and kitchen chores won’t probably by possible for long enough to justify that expense. In my case being small our expert advised that my wheel chair would fit through the doors without widening. And so far so good!

If you have great public handicapped transportation you might not need a van. So far we haven’t. If your income is lower you might qualify for some local funding for renovations. I would really emphasize turning to your ALS Association for guidance and support. They will know the local options and probably have lists of contractors and design experts for you. Good luck!

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Old 01-12-2019, 11:46 AM #13 (permalink)
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Default Re: Advice for home renovations or adaptations

The only modification I did with the kitchen was cut the size of the huge island so my PWC could navigate throughout the whole house. Widening the doors to 26 inches was the best use of $$.
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Old 01-14-2019, 03:12 PM #14 (permalink)
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Default Re: Advice for home renovations or adaptations

My husband has what we think is a slow progressing form and currently it is really only impacting his hands/arms/shoulders/tongue. His legs are just as strong as ever. So the progression might dictate what you do for a remodel? I don't see the need to put grab bars in as his hands and arms are going to essentially be useless way before his legs start to weaken. We do have bidets and tall toilets as a starting point, and I am sure I will get a shower chair, but its really hard to know what to do and when in terms or getting our home ADA ready.
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Old 01-14-2019, 04:47 PM #15 (permalink)
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Default Re: Advice for home renovations or adaptations

Welcome, Hood River. Feel free to introduce yourself and let us know how we can help at any time.

Even with arm onset and slow progression, I would still make sure the house will accommodate a wheelchair, as odds are he will need one in time.

My husband's issues were confined to the trunk/arms for a good while, but when his legs failed, it was sudden. He went from being able to walk miles to struggling with a few blocks, literally overnight, and in a few months, used a wheelchair full time.

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