My oldest daughter (Alicia) and I (Steve) are both in motorized wheelchairs due to HSP. This article comes from personal experiences that I believe will be helpful to anyone who is considering a wheelchair. Again remember these are our personal experiences and yours may be different.
So you decided or your family has decided you need a motorized wheelchair what are your options and what must you consider? First let’s look at the wheelchair its self. When talking about motorized wheelchairs I am not talking about 3 wheel scooters. There are several types of motorized wheelchairs from a few hundred dollars to ten thousand or more dollars. You must determine are you using the chair indoors and shopping only, are you going to be outdoors in the yard, will you be traveling the roads and sidewalks or how rough are you going to be on them? If you go through Medicaid, Medicare, Voc Rehab, or will paying out of your pocket? All these things have advantages and disadvantages. If you choose to use a government agency remember they will only give you the cheapest thing that they are allowed to and do not take your living arrangements in consideration. For example Alicia has Medicaid and Medicare. They use to give her a new wheelchair every five years. That is no longer the case now they will give her a new chair every seven to 10 years unless the chair is deemed useless or a doctor’s order for a new chair with more options than the previous model. (example foot rest that raise and lower or a chair that becomes a recliner or bed). You can argue for a better chair and depending on the agency and worker you may or may not get it. My suggestion is to always tell them you do more than you are currently doing. Things change you may want to change too. My wheelchair is designed to be used outdoors. The agency asked me why I needed such a chair and I told them I have gravel driveway, I live in the country and there are no sidewalks so I have to use the roads to travel to my parents’ house and back (1 mile), I love to go in the yard and take care of the plants and our yard is new (at that time it was the first year for the yard), and I want a chair that holds up to my physical demands I request of it.
Now you figured out what chair you want and what you will be doing with comes the next step ordering it. If you use an agency there may be a deductible. Color selection is hard to do Alicia has a bright yellow and it shows up great. I wanted to be less noticeable and ordered black, which was a mistake as it does not show up well on the road and it shows dust and dirt way too much. If your chair has a problem and they all will at some time you have two options go through the agency or pay out of pocket. Here is what we have learned and if possible you may want to follow the same thing. Let’s say your sector block (the part of the foot rest that holds the foot rest in place when closed) breaks. If you go through the agency then you must go through these steps. Take the chair to the chair place, the chair place must get a PA (prior authorization) from your doctor, the doctor sends the PA to chair place, the chair place sends this information to the government agency, then agency approves or denies the request. If approved then the chair place orders the part and waits for it to arrive. If denied you start all over with the process. This whole thing can take a few weeks to more than six weeks. Meantime you are without use of your chair. We ran into this a few times until I realized the small parts (arm rest, sector blocks, and few other pieces) are very inexpensive between $25 and $50 dollars each. If you tell the chair place you will pay cash at the Medicaid rate for these pieces they may give you them at the discounted price instead of retail. Now I am somewhat mechanically inclined so I fix these with any problem. I have a tool box just for wheelchairs. Inside I keep one of everything left and right of the parts that typically break. I keep all the wrenches, and allen wrenches necessary to make a repair. The wheelchair companies are very smart on this and have both metric and American standards so you need both. I keep the tool box in the van where I am in case of any breakage. This has paid off both for me and Alicia. Sure beats waiting six weeks for a repair. Most chair places will know what you need, and if they are honest will tell you or show you how to replace them. Although the place we deal with has now gotten to the point of making it harder for us to order the parts by changing the parts numbers. If you can download a manual and service manual for you chair or have as part of the sale the salesman give you one with pictorials of the parts.
You now need to consider your home and vehicle or modifications. DO NOT follow the ADA recommendations. They are that only minimum recommendations. Always add more to the recommendations. Example an incline for ramp should be for every inch up is a foot out. I recommend for every ½ inch up a foot out. This may not seem like much but if someone ever has to manual push your chair up the ramp they will thank you. If the ramp becomes slick in the winter the less slope is easier to maneuver the chair down in these conditions. Find a chair that is similar to the one you want and rent it for weekend or week and use it in the house. You will quickly find four foot doors and six foot turning radiuses are more the minimum than the ADA requirements.
Vehicle requirements may or may not work with your vehicle best advice I have is check around. Unfortunately where I live we only have one reliable choice.
Footrests are two types the swing out and fold up. We both have the swing out. My next wheelchair will have the fold up type. These seem to break less and are stronger.
Seats are good for two years or less. Foam is not always the best you may want to look at gel (which may get cold or hard) or air pockets. Even if you have no bladder issues a incontinence seat cover is a great investment as it sheds liquid such as spilled drinks, rain, and water.
Tires are major consideration they will need to be replaced once every few years depending on the surface you drive on. Ours is the yard, gravel driveway and chip and seal road surface. Your large wheels are called your drive wheels. Alicia has hers in the back and I have mine in the middle of our chairs. The ones in the center have a tighter turning radius which is nice.
A wheelchair is extension of your body. Try not to run into people. I hate it when people lean on my chair and yes I can notice it. When you first get your chair it is always best practicing with it outside and inside in an area you know you will not hurt anything.
Most wheelchairs have a variable speeds. Alicia’s is one gear only and mine has four gears. The gears can be set for various levels of torque which helps in rougher terrain. The chair company will set the speed at whatever speed you think you are comfortable with. You can always change this and it only takes about ten minutes.
Purchasing a reflective vest, hat, and or tape for higher visibility will be a great investment. I know I was almost hit in my chair on the road.
Please drive responsibly and have fun. I hope this helps.
Tuesday, December 4th, 2012
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
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