Wheel chair questions

[Colleen15]

I have bulbar onset. My legs are getting quite non functional, i can barely walk. I stay home and would only go out for a doctor appointment.
I am going to get a very standard wheelchair at this time. At some point my arms may not function.
Does everyone get a power wheel chair? My husband lives with me. I generally use 2 rooms and a bathroom. Why would I need one if I don’t leave the house? Wouldn’t I just sit in a regular chair all day? Thank you.

 

[Nikki J]

Do not use your insurance for a standard wheelchair. If you want one now great buy one. but insurance only covers one mobility device ( wheelchair or scooter) every five years. Save it for a power chair which will have tilt and recline and be configured to support you much better. My sister could only tolerate tilt for her last couple of years. There is more independence with a pwc. I intend to bypass a regular wheelchair entirely

If you go to mgh message your pt and talk to them. I believe they will echo what I said

 

[lisa g]

Definitely ask your clinic for a PWC evaluation. A PWC is tailored to your body adding support where you need it. A standard chair will not have the tilt options to relieve pressure points. Plus a PWC takes a little while to get. I had my evaluation done in April and received my chair in July. I am not using it right now other than driving it around the house once a week to exercise the batteries. I have peace of mind that it will be here when I need it. An additional benefit is now the seat elevation feature is now covered by Medicare where as before it was around $2,500 out of pocket or you could apply for a grant.

 

[Statius@]

I use both but wouldn't be without my PWC. As Nikki says it is more comfortable and the tilt function provides support you can't get with a manual chair. I do go out (using a van for transport) and that is much easier with a PWC.

Ed

 

[monique92760]

I agree with the folks above. Get a PWC!! Once I got mine and a used handicapped van, my life changed!!

 

[oldgeek]

I was told I'd be in the chair almost full time so I got one with all the bells and whistles. It took almost six months for medicare to approve and during that time, I went from nice-to-have to must-have. So, I'm glad I didn't wait much longer. Some days I can walk around the small retirement apartment I live in; but I always need it for trips to the doctor since I'm on a ventilator almost full time, and need the chair to carry it. This progressive disease means you should plan for the inevitable future. Get the power chair.

 

[KimT]

Three essential items I would not go without (me only) are power wheelchair, bidet toilet seat and lift/recliner chair.
I also have a transport chair, a small power wheelchair (for going around the condo building to visit other people, and a rollator. I use them all.

Many people with motor neuron diseases spend most of their day in a power wheelchair because it's designed to be comfortable and it also can be modified according to your needs.

 

[swalker]

I cannot imagine being without a wheelchair. In fact, I have multiple wheelchairs to choose from.

You will eventually need a wheelchair. The only option would be to commit to spending all day in your bed when you lose sufficient mobility to walk to other rooms in the house.

I spend a lot of time outside of the house. I love being outside. Having the wheelchair makes this easy. In fact, I typically ride my wheelchair about 1,000 miles per year. Very few of those miles are indoors.

So, I encourage you to consider getting a power wheelchair that will meet your future needs. You don't have to use the wheelchair in the house, but having it will allow you to go on longer excursions outside. You can use it for medical visits, going shopping, or just sightseeing.

My local Durable Medical Equipment (DME) provider is quoting 4 months as the time frame for getting a wheelchair. ALS progression can result in a lot of changes in 4 months. I encourage you to start the process of getting a wheelchair now so that you will have it if you do have a greater need for it 4 months from now.

If you decide to get a wheelchair and have questions about wheelchairs, be sure to post them. I would be glad to answer them.

Steve

 

[swalker]

I noticed that you are in Boston. The challenging winters there may cause you to question the value of having a wheelchair in the winter.

I live where it snows much more than in Boston. So far, we have had over 160 inches of snow this season, with a total of over 300 inches typical for the entire season.

I have various tires for all my wheelchairs. I have normal wheelchair tires, tires with aggressive tread, and also dedicated snow tires. Therefore I am able to go out in any conditions. It is great to be able to go outside, even when the conditions are challenging!

Steve

 

[SteveO]

@swalker I was wondering how much the moisture eff the operation/reliability of your wheelchair? Do you notice any maintenance issues or increased service requirements due to get wet? What type of tires do you refer to a winter/snow tires? My F3 has fairly aggressive treads but I wouldn’t say snow tires, I’ve been hesitant to go ou in the weather as we live in the country so to speak with most gravel walkways and roads.

 

[swalker]

Moderators, I am taking this thread off topic a bit to address SteveO's questions about wheelchair tires and riding in wet weather. If you think this should be moved to another thread or a different sub forum, please feel free to do so.

SteveO, I use 3 different type of drive tires on my Permobil Wheelchairs. Each of these is available as foam filled or pneumatic. I have used both for all 3 types of tires.

1. Pr1mo Powertrax - Permobil Flat Free (Foam-Filled) Tire Gray | Standard Tread
These are the standard powerwheelchair drive tires for Permobil and other brands of wheelchairs. I find they have a long life and are good for wet and dry paved surfaces. They are not very good on wet grass and are pretty terrible on mud, snow, sand, etc.

2. Permobil Aggressive Tread tires - Permobil Aggressive Tread, Flat Free (Foam Filled) Tire 3"W x 14"T Black
These a great tires and the ones I use the most. They do pretty well indoors and quite well in softer soil, light mud, and a bit of snow.

3. Permobil Mud and Snow Tires - (3.00-8 Drive Tires-Asm. and 210x65 Casters Tires Permobil part number 614750). These are surprisingly good in mud and in snow. They are wider and flatter than even the aggressive tread tire, so have a bigger contact patch. They are also made of a tackier compound, so have good grip, even on a bit of ice. The downside is that they will wear out very, very quickly on asphalt, I discovered this by wearing out a pair in less than 100 miles of riding on asphalt.

I prefer foam filled tires for reliability, but on my C500 wheelchairs, the suspension is not comfortable when using foam filled tires, so I use pneumatic ones. I carry a pump, spare tube, patch kit, and all tools necessary to repair a flat when riding pneumatic tires.

I have found that buying tires from my Durable Medical Equipment (DME) provider to be problematic. They only want to supply the entire wheel with tire already mounted. They usually charge about $1,000 for a set of drive wheels. Worse, it typically takes several months to receive the wheels, because they have to go through their process of getting insurance approval, etc.

For the 4 of my 5 wheelchairs not covered by insurance, I find it much easier to buy off of ebay or buildmywheelchair.com. That way, I can have tires only, at a reasonable price, delivered within about a week.

As for wheelchairs in wet weather, that can be a problem

I do my best to protect my wheelchairs. The control modules are pretty well protected under the shroud, but the joystick module and ICS controls are vulnerable. I always carry a gallon zip lock bag, which comfortably fits over the joystick module and ICS controls to protect them it is wet out.

I also carry a poncho in the pack on the back of the wheelchair, which can provide substantial protection for both me and the wheelchair from the elements.

However, I have been caught out several times where significant electrical parts of the wheelchair became wet.

First, I was watching a geyser erupt at Yellowstone. The wind shifted and the water expelled from the geyser soaked me and the wheelchair. Significantly, the ICS controls collected a lot of water (saturated with silica). The wheelchair quit working. We dried it out using a hair dryer and had it operational after a couple of days, but eventually it needed the ICS module (which lives under the shroud) replaced. This was well over $1,000.

Second, I was caught by an unexpected thunderstorm while riding the dirt roads at our local ski area in the summer. By the time it was over, both the wheelchair and I were thoroughly saturated. I let the wheelchair dry for about 4 or 5 days and it eventually returned to normal operations.

Third, we were on the bike path in the Tetons when a thunderstorm popped over the Grand Teton (to our west). We had kept an eye on the weather, but could not see the storms building on the other side of the Tetons. We got hit by a tremendous downpour and the wheelchair got very wet (as did I). The wheelchair started misbehaving and eventually shut down. We let it dry out for a bit and limped back to the van. After drying for another 3 days, it seemed to return to normal operations.

It is good to have backup wheelchairs!

Steve

 

[Jazyjane]

These are all great responses I got a pwc from my ALS clinic to use while my Permobil was fitted and ordered. This allows me tlo have freedom around the house but to travel on planes, van and cruises whenever I want. When I lost the ability to stand, I borrowed a Hoyer lift and purchased 2 slings from Amazon. Try to stay 2 steps ahead of equipment needs.