Kennedys Disease Community
Things that work for me...

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10-10-2005, 01:58 PM
Bob Heitzman
Things that work for me...
I am still mobile but am challenged by sit/stand, picking stuff up from the floor, and stairs/curbs.

Things that work for me:

Around the house I use taller seating that normal - a standard kitchen chair + dense 4” cushion, “booster seat” on the toilet, tall office chair for desk work, and I placed a platform under the lazy-boy. I also have reach-and-grab gizmos at the ready in my bedroom and kitchen.

Probably the only non-obvious one is the platform under the recliner. It is a simple design with ¾” plywood on top of lumber to build it up (I had ready access to some 1 by, but anything stable will do. The platform also has 2 - 2x4 blocks fixed in place under the front corners of the recliner to arrest forward tilt when rising. I have the seat cushion at 21” inches now but will probably add some height soon. A more professional job would have the chair fixed to the platform but I haven’t had problems with the chair just sitting on the platform. Due to lumber I had around the platform is deeper than needed. This probably contributes to the stability. Pretty much by accident I added a toe kick (vertical support is back a bit from the front edge of the platform) which has proved useful. Try at your own risk!

I know there are power recliners out there but I like the more rapid access/egress of a regular recliner, plus the platform allows the rocker feature to work. Plus I get the up/down exercise – use it or lose it! Plus it was cheap!

I haven’t tried this but it may work for some – add “bed elevators” under a couch. The home stores like Bed Bath and Beyond have a wide selection. Questions would be: can they be used with the legs of your couch and is it stable (some may also ask if it is ugly but that isn’t a problem for me). I suppose a platform would work too – a front toe kick would be critical – and would look nicer.

I use bed elevators under one end of my bed to give me a tilted sleeping surface – 27” down to 24”. I have a standard metal frame with rug castors at the foot. At the head I have removed the castors and added the bed elevators. The tilt has helped me a lot; I can’t sleep on the flat any more without breathing or digestion problems (I’m overweight too so that doesn’t help).

I have a mini-van, power lift, and power chair I use out and about. See post under Mobility Aids for details.

email:rheitzman at gmail
10-10-2005, 04:19 PM
Bob has done a wonderful job of putting down his thoughts and experiences.

I use a power-lift recliner only because I found it difficult to get our of my LazyBoy. I loved my LazyBoy and put 2x4s under each leg and it worked for years, but near the end I was finding it more difficult to get out of the chair. The power recliner works great, but I have one complaint. It is not as comfortable as the LazyBoy.

I also use bed elevators (leg extensions)t on all four posts and they make entry and exiting from the bed easy. I highly recommend them. I also have problems sleeping on a flat bed (choking issue), so I purchased a foam wedge that raises my head about six inches. It has worked wonderfully for several years now. The wedges can be purchased from almost any hospital supplie store and comes in several heights.

We bought a bar-height table for the kitchen nook and three bar stools with backs. It is a perfect height.

For the dinning room chairs, I have an up-lift seat that works great. It provides just enough lift to get my knees at about a 100 degree angle for easier rising.

Finally, we bought a small aluminum ramp (3x3) that fits on the pedistal of the front door. With the ramp, I can easily use the front porch (with the wheel chair or just walking). It is also quite convenient to take out with us if in case the place is not handicapped accessible.

This message has been edited. Last edited by: Bruce,
08-30-2008, 12:21 AM
My husband has found that the Craftsman strap wrenches work very well to open jars, and bottles. They give you grip and leverage and they have different sizes available - he has both.
01-08-2009, 02:24 PM
FYI - I have a lift recliner manufactured by Golden Tech (they also make excellent scooters). It it the most comfortable recliner I have ever used.
08-05-2010, 08:39 PM
I thank you for a little bit of new items that could help my dad with his every day living.hes getting bad throughout the many of years dealing with kda.hes stubborn and is a fighter.we know this is why hes still with us.
08-08-2010, 09:00 AM
Hello Lyn!
Stubborness seems to be found in a lot of our KD'rs! LOL! I'm glad you have found information on our site to be of some help to you and your Dad, it has been a great source of information and support for our family. You and your Dad may want to check out the monthly internet chats that are held on Saturdays. The first and third Saturdays are when the "guys" get together and the second saturdays are when the wives and significant others get together.
08-08-2010, 04:54 PM
Bob Heitzman
Since my original post in 2005 I too have added a Golden Lift Chair. I still needed to place the plywood platfor underneath to make the transfer out easier.

Sine 2005 I also added a Stand-Aid Toilet Aid aka "robo john." I live alone without a care giver so this device is providing my with independence a bit longer. Before I got the robo john I had max's out the height on a commode chair and even added some spacers to get another inch. That worked Ok but my legs dangled and it was quite uncomfortable in short order. A short stool helped but the robo-john id the better approach IMO. I took the cover off the back as the seat wouldn't stay up - even then I had to add a bungee chord to hold it up reliably.

I've also added a sliding transfer bench to the bath tub: link Some of the models have optional legs that give the chair more height - the bench wouldn't have worked w/o them for me.

A recent edition to my working set is a dressing stick. This device is cheap and works better than the typical grabbers. My main difficulty was getting pants on w/o being able to lift my legs far enough nor being able to reach down and grab pants to pull them up. (I'm doing this sitting down in case you are wondering.)

Speaking of pick up sticks.... Orchard Supply Hardware(OSH) has the best one I've found. The prevalent ones take too much strength to use. The OSH one is great for getting things up off the floor. Not as good as others at getting cans and jars down from cabinets.

Any way - just a few things that make life easier for me - hopefully they will help you too!

email:rheitzman at gmail
11-15-2014, 12:30 PM
Bob Heitzman
Wow, time flies....

I thought I would provide an update and add a trick for eye drops.

I've added an "hospital bed" to the mix of supporting tools. I have one with power elevation which is highly recommended. The "head" tilt allows me to easily adjust position. The bed rails are critical for positioning and rolling over. Sleeping nude makes positioning much easier - or - wearing bed clothing makes positioning very difficult.

I purchase a used old tin model - workings fine. There are many offerings on the market. Some accommodate two people with their own tilt adjustments. I would guess polling over would be harder in a two person bed as you may not be able to use both hand rails. A trapeze may be called for.

Eye Drop Trick:

I recently had cataract surgery, which if you've been through you know that there is a regime of eye drops, several types, several times per day. With the KD symptoms of shaky hands and weak small motor skills I found apply eye drops difficult with some bottles and impossible with others.

I found a near perfect solution for my problems with handling the small eye drop containers:

I picked mine up at a local Ace hardware store. My local OSH didn't carry the puller. search: Buss Cartridge Fuse Puller has them under $5 + $7 shipping. link

The handles are long enough that I can keep my hands close to my body for stability, and of course the pliers action squeezes the bottle with little effort. The jaw size is perfect for eye drop bottles.

If you regularly use eye drops I highly recommend these pliers.

email:rheitzman at gmail
11-25-2015, 02:12 PM
BC Paul
Love your practical solutions Bob, have you tried a button hook? they are not hard to build your own but are beginning to be found again at stores. Most have a zipper hook on the other end.
11-30-2015, 07:31 PM
Bob Heitzman

No I haven't tried a tool for buttons - 98% of the time I can still work my buttons.

email:rheitzman at gmail