Diagnosed Yesterday- house questions

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KW1234

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Joined
Sep 28, 2016
Messages
269
Reason
PALS
Diagnosis
10/2016
Country
US
State
OR
City
Hillsboro
Greetings from Oregon- I was diagnosed yesterday with ALS.

We are selling are 3 level townhome (stairs are evil), and just purchased a single level home which we will be making some renovations to. Looking for suggestions on house updates.

We are already planning to rip out carpet to put in hardwood, renovating the master bath, changing door hardware to levers and switches to rockers- any other suggestions on how to make the house more comfortable?

Thank you in advance and I will definitely be back with more questions... my head is swimming...
 
Very sorry to welcome you here, but welcome nonetheless. You will find this to be a great source of encouragement and support.

Here are some thoughts, all based on the notion you will be using a Power WheelChair (PWC) sooner or later (I recommend sooner). Note that PWCs can be rather large.

1. Consider doorway and hallway widths. They need to be wide enough for the PWC, but also wide enough to turn into and turn around in.
2. Be sure you have a roll in shower, room around the toilet, etc.
3. Have ramps if necessary to get in and out of the house, garage, deck, etc.
4. Be sure to have sufficient room to unload your PWC from the PWC hauler (probably an adapted van). If it is side loading, make sure you have 8 feet next to the van to unload the PWC and PALS into. Then make sure you have a clear path for the PWC/PALS to make it into the house.
5. PWC-hauling vehicles are tall, be sure the garage entrance and interior are tall enough to accommodate the vehicle if you want to load/unload in the garage (highly desirable in inclement weather).
6. I have trouble opening and closing doors from my PWC. I hope to eventually install remote-controlled, automatic doors in key locations.
7. I don't have them, but remote controlled lights and curtains would be fantastic.
8. Be sure there is a lot of room around the bed and that the bed has legs (so a hoyer lift can slide under it).
9. Consider installing a ceiling track (or at least prepping for it) if you think that will be more convenient than a hoyer lift.

Accept that within the first month of getting the PWC, you will likely mar the walls in numerous places. In my case, that included putting a sizable hole in the drywall;). After a month or two, the danger to the walls is greatly diminished. I would lean toward a wall finish that is easy to repair. Sprayed-on texture is harder to match when repairing than hand trowelled texture. Keep some spare paint.

I am sure others will be chiming in with more ideas.

Steve
 
All that Steve said is good.
Welcome to the forum a great place to share stories and experiences. We help each other, your not alone!
Not just with houses and cars you will be going through a lot of changes. Clothes like buttons and zippers become tough.
My cals put large rings on my zippers that help a lot.
No buttons only pull overs with help. Consider down the road an aide for the morning to give your cals a break.
Are you a vet? If so there is a lot of help there . Welcome chally
 
Thank you for the wonderful suggestions.... fortunately the house we purchased has an RV parking area on the side and a door going right into the master bedroom which should work well for the future PWC and van.... might need to put a wider door in but that shouldn't be a problem. Great idea with the remote control doors... we already have the Hue lights that we can turn on from phones, or an ipad, and heating control with a Nest, but I hadn't thought about the doors which is kind of funny because it's one of my frustrations as my arms are getting weaker- opening doors- particularly car doors is challenging.
 
Good idea on the zippers... I've been having a lot of trouble with buttons and zippers- just ordered some new pants without buttons after it took me close to 30 minutes to button a pair of jeans.

Not a vet, but my father was in the air force so I spent my childhood living on air force bases, and I have a son who is an active duty Marine currently stationed in Thailand. (much better than Iraq or Afghanistan- he did 1 tour in Iraq and 5 in Afghanistan)
 
Welcome to our family. You will find much support here.

In the bathroom:
*Have the walls studded out all around the room and shower to accomodate grab bars. We added some after ours was done =and were very fortunate that our builder thought to do that.
*Hubby used a fold down shower seat for awhile before having to use the shower chair. The fold down is now out of the way unless I want to use it.
* Long hand held sprayers that show the water temperature (makes it easy for us to get the temp right for him) and controls that allow you to preset the temperature and just turn the water on and off.
*A single handle on the sink faucet rather than seperate hot and cold
* A bidet on the toliet which requires a power outlet next to it.
*I've seen people dryers since doing our bathroom that would Have been nice.
*Mostly, lots and lots of space. Eventually you may need a reclining shower chair, so make that shower long enough and wide enough.

A door directly into the bedroom is great!

There will be more suggestions, I'm sure.

Becky
 
Hi KW.

Welcome from a fellow Air Force Military Brat whose childhood was also spent growing up on Military bases (Africa, Turkey, Germany, Okinawa)

Here are few more ideas for you to consider:

We replaced our interior door hinges with expandable door hinges. These will give you an additional 2" of clearance if using a wheelchair. You can see an example on Amazon under HealthSmart Expandable door hinges.

We installed a generator for when we lose power.

We installed a sidewalk going from the back door of our house to the sidewalk in front just in case the front door and garage door became inaccessible.

We too installed a bidet and love it. One tip is to make sure the electrical outlet is a GFI.

vw-fl
 
Awesome ideas- thank you all... we hope to meet with the contractor in a couple of weeks.

-Karen
 
So sorry my friend. I hate ALS and what it does to us and our loved ones.
 
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