Buying a wheelchair is like buying a car

So many types and models, and so many options...how do I know what is best for me?

Quest Magazine has some great articles. A while back, there was one written by Kathy Wechsler called, “Front, Middle or Rear … Finding the Power Chair Drive System that’s Right for you.” For anyone in need of a wheelchair, new or replacement, this article is a good read.

Ms. Wechsler wrote that it is best to work with a certified rehabilitation technology supplier (CRTS) as well as an occupational or physical therapist who specializes in wheelchairs. They will perform an assessment and evaluate your particular needs and capabilities. She also recommends that you ask a lot of questions, and not quit asking until you feel comfortable with the answers you are getting.

My first wheelchair was a mid-wheel. It served its purpose, but the seat would not elevate. After about three years, I found myself having difficulty standing up from the chair. When I upgraded to a new chair, I spent several hours with a seating-specialist and occupational therapist. They evaluated my situation and my current capabilities. They asked dozens of questions regarding what my needs are today and what my capabilities might be five years out. Yes, five years.

Chairs are an expensive investment and you do not want to purchase one that will only fit your needs for the next 2-3 years. When I transitioned from a mid-wheel to a front-wheel drive with seat elevation, it was very different and I scarred a few door-frames in the first few weeks. I tend to like front-wheel more, but it took a little while to get used to it because of my experience with a mid-wheel.

Based upon information provided in the article and my personal experiences, I have listed some questions and considerations before purchasing a chair.

• Don't just consider today's needs. Since you want to have a chair that is comfortable and yet capable, always consider your lifestyle, capabilities and needs, now and five years into the future. Take your time and consider the right chair for the right reasons.

• How is your home configured? The size and setup of your home and office is very important in helping to make the right decision. Does the home have an open floor plan? How tight are the kitchen turns? Carpeting takes a beating with a wheelchair. Hardwood floors and tile are far more accepting. What are your home’s exterior and interior door widths? You want to be able to access your kitchen, living room, bedroom, bathroom, and closet. 

• What is the width and turning radius of the chair you are considering? Mid-wheel chair require a smaller turning radius. Are the chair’s arms adjustable? 

• How will you gain access to your home? There are portable ramps that are
  
  reasonably priced, or you can build a ramp. Portable ramps are nice when you visit other locations that are not handicap accessible. But, they are not light and easy to handle. Always consider a secondary exit plan in case of a fire or other emergency. Do you have a rear deck or porch that you want to access? 

• What type of seat and backrest do you need? Comfort is king. Since you will be spending several hours a day in your chair, a properly measured seat and backrest are important. There is nothing worse than having a seat or backrest that is uncomfortable or not quite right. An improper fit can also cause pressure ulcers (bed sores).

• How will you transport your chair? Do you have a wheelchair accessible vehicle?
  
  If so, will the new chair work with it? If you do not have a vehicle, what is needed to be able to take the chair with you? Wheelchair accessible vans are a fantastic tool. Fortunately, there are many used vans available today. There are also transport platforms that can be used on sedans or SUVs. 

• What type of suspension system do you need? Do you spend a lot of time outdoors? Usually front and rear-wheel drive units perform the best. There are also specialty chairs for the outdoorsman. 

• What kind of obstacles and inclines will you encounter during normal use? Front-wheel drive units perform the best for curbs, grass, gravel, snow and uneven terrain. Mid-wheel drive chairs can become hung up because they have front and rear casters. On the other hand, mid-wheel drive units are usually the most stable on inclines and declines. Normally, rear-wheel drive units are the least stable on inclines and declines, so it is important to have anti-tippers installed. 

• How fast do you need to go? For speeds up to 5 or 6 mph, all chairs perform well. For higher speeds, front and rear wheel drive chairs are more stable and easier to drive. 

• Do I need a Group 2 or Group 3 chair? Group what? There are seven groups of chairs. Most of us living with Kennedy's Disease will start out with a Group 2 chair and at some point might require a Group 3. Within these two groups, there are a variety of options (like accessories on a car). Some are not needed, but others might be helpful or even needed. 

• New or Used? There are a lot of good quality used chairs available. Most are a cost-efficient way to purchase your first chair when it is not medically needed yet. The key learning to take from a used chair consideration is the next point on who will service the chair. Do not assume your local dealer will service your chair if you buy it somewhere else. I learned this the hard way and it was no fun.

• Who will service your chair? Just like your car, this is very important. And, it is especially important if you purchase a used chair. I know of one man who lived two hours away from the nearest dealer. When his chair needed servicing, he could not find anyone who would make the trip. In-home-service is a wonderful convenience especially if the chair stops working for some reason.

• And, what will be your out-of-pocket costs - those not covered by your insurance provider? Most every provider has certain pre-purchase requirements. Know what they are ahead of time. With Medicare, for example, requires a Certificate of Medical Necessity (CMS) provided by your doctor. Also, they do not cover any of the cost for an elevated seat. They do not feel it is necessary. Those of us living with Kennedy's Disease might reach a point where the only way to transfer from a chair is with an elevated seat. 

To summarize—all three models of chairs have their pros and cons. That is why it is important to get a personal evaluation and assessment as well as to ask a lot of questions. I also advise asking an occupational therapist to tour your home. He/she will see things that you and I would not even consider.

If you have questions or additional comments based upon your experience, please let me know.

The Top 10 Benefits of Using a Wheelchair

Because of the slowly progressive nature of Kennedy's Disease, I fought using a wheelchair for several years. But, I must say, once I crossed over to the ‘riding’ side, I found there are some benefits. 

This is an update on a 2009 post and is meant to be informative and entertaining.

The Top 10 Benefits of Using a Wheelchair

10. You never become tired while shopping with your spouse. If she takes too long trying on clothes, you can recline the seat and take a nap.

9. You can go twenty-five miles at five-to-six miles per hour without breaking a sweat.

8. You have preferred parking spaces all over the city. (Most of the time anyway)

7. No matter how crowded, you have a special seating section at movies, concerts, and sporting events. It might not be the best seat in the house, but no one is sitting in front of you.

6. Many movie theaters provide discount tickets or have free admission for anyone in a wheelchair. Now this is a PERK.

5. Most people will step aside to allow you a better view (at the zoo, aquarium, parade, etc.).

4. If you bump into someone (accidentally or on purpose), they almost never take offense and often apologize to you.

3. You never complain that you have been on your feet all day.

2. If you have one-too-many, it is ‘almost’ impossible to stumble and fall. I will not mention last Thursday night.

1. If you insult a 300-pound ‘biker’, his reputation for being a tough-guy will not improve by stomping on you.

If you have a more reasons, please let me know.

Wheelchairs and Winter

The article below appeared on several of the Kennedy’s Disease Facebook pages a week ago. It is on the Rick Hansen Foundation website and is a good reminder to follow the Boy Scout Moto, “Be Prepared.”

Winter is tough on those of us living with a progressive disorder. What we could handle last year is more difficult today. Where we once enjoyed the season, it is barely tolerable today. Ice was once for skating. Now it is almost impossible to just safely navigate. Snow was for playing and shoveling back then. Today is keeps you indoors. Salt and sand were good for traction and a melting aid. Now it just messes up your chair and could cause considerable damage. And, if you break down or become stuck in the winter, it could become a life-threatening event.

The Wheelchair User’s Guide to Surviving Winter

Written by Heather Kuttai

“Alarmed would have been an understatement when I saw them: dark purple-black spots on all of my toes. “What on earth are those?” I thought. Considering the circulation problems I have had with my feet, panic struck: “It couldn’t be gangrene, could it?!”

It wasn’t. Luckily, I had a doctor’s appointment the next morning. “Frostbite,” he declared, and then frowned my sneakers. “It’s -20 outside. What part of living in a Canadian winter do you not understand?” …”

Click on the title to read the entire article.

And, speaking of wheelchairs, check out this article to read about this handy app.

GoogleMaps now shows if a location is wheelchair accessible

“Google Maps, an app favored by nearly 70 percent of iPhone users, will now list wheelchair accessibility alongside information like traffic and store hours. The new addition makes using the app easier for people with disabilities, as well as parents with strollers and the elderly.

A team of Google employees, led by Google Drive product manager Rio Akasaka, took advantage of a dying company policy to make Google Maps accessible for people with physical disabilities. The famous 20 percent policy, announced by Google founders Larry Page and Sergey Brin in 2004, encourages employees to spend up to 20 percent of their working hours concocting personal projects that might benefit the company. …”

Click on the title to read the entire article.

Be safe and stay upright.

For your consideration

The MDA sent out an email yesterday concerning a proposed change that would cut payments for more complex wheelchair accessories. This is something that needs our, those of us living with Kennedy's Disease, attention.

As some of you might know, seats that elevate are not covered by Medicare. This has always been frustrating. With a lift seat, I can still transfer to another chair, the toilet, and the bed. Without it, I would need to have someone capable of assisting me by my side all day.With adjustable seats, seat backs, and leg rests, I can take pressure off of my hips, buttocks. legs, etc.

Please read the bulletin below and consider contacting your representative by clicking on the link below. Thank you.

Help Preserve Access to Complex Rehab Technologies By Taking Action Today

The Medicare program is planning to cut payments for complex rehab wheelchair accessories that are needed by people living with muscular dystrophy, ALS, Spinal Muscular Atrophy (SMA) and other neuromuscular diseases.   The cuts are set to take effect on January 1, 2016 and would limit access to critical accessories such as custom head support and seating systems, mounting hardware, adjustable leg rests, and specialty drive controls among other wheelchair accessories that people living with these diseases rely on each day of their lives.  Therefore, we need your help today!

The Muscular Dystrophy Association (MDA) and ALS Association have joined together to support legislation introduced in the House (H.R. 3229) and Senate (S. 2196) that would stop these cuts and ensure that people with muscular dystrophy, ALS and other neuromuscular diseases continue to have access to the full range of complex rehab accessories that meet their medical needs.

Please contact your members of Congress and urge them to cosponsor this critical legislation. Because the bills must be passed and enacted by December, 31, 2015 in order to prevent these cuts, it is critical that you contact Congress today!  A letter you can customize and email directly to your elected officials is available by clicking here. 

Background:   
In 2008, the Muscular Dystrophy Association (MDA) and the ALS Association supported legislation that specifically excluded complex power wheelchairs and related accessories from Medicare’s competitive bidding program.  Congress took this action because they understood that the competitive bidding program did not recognize the complexities of neuromuscular diseases like ALS and muscular dystrophy, the difficulties imposed by the diseases, or the sophisticated equipment and services that are required to help improve the lives of people living with these diseases.  Since that time, complex rehab accessories have not been included in the competitive bidding program.   However, Medicare is now planning to change that, despite existing law that specifically excludes these technologies and despite the fact that such a change could reduce or even eliminate the availability of these vital technologies.

H.R. 3229 and S. 2196 would make technical corrections to the law to clarify that complex rehab wheelchair accessories should continue to be covered using Medicare’s established fee schedule amounts and not be paid for using competitive bidding prices, which do not capture the full cost of these customized accessories.  The bills follow the intent of Congress with passage of section 154 of the Medicare Improvements for Patients and Providers Act (MIPPA) in 2008 and would help to ensure that complex rehab technologies remain available to people with ALS and muscular dystrophy, and other neuromuscular diseases.

The Permobil F3 Corpus

Old Faithful, my Permobil C300 wheelchair, was beginning to show signs of aging. The chair has been good to me, but it needed new tires, two new motors (and maybe the seat lift also), replace the batteries, new seat cushion, new cut-off switch, etc. When I priced the total repair bill, the decision was made to get a new chair instead.

Introducing the Permobil F3 Corpus, the replacement for the discontinued C300. I have had it for a week and I am impressed. The website describes the F3 in this way:

The F3 CORPUS offers the smallest footprint of this redesigned series of front-wheel drive power wheelchairs. Its size and agility let users move quickly in and out of tight spaces like busy city streets and crowded areas like malls...or even parties. The platform has a lower, repositioned center of gravity, which greatly improves stability while traversing inclines or declines. With its fully independent suspension, the F3 provides a comfortable ride and allows users to navigate the obstacles of life.

The CORPUS® SEATING SYSTEM. We retained all of the things that you have come to expect from the legendary Corpus seating system like the arc legrests, the open armrest design and the UniTrack System. Then, we took the Corpus seating system to the next level with advanced features such as: the 12” seat elevator and the A/P tilt function, which allows for optional 5º, 10°, 20° and 30° of anterior tilt, while maintaining 50° of posterior tilt. The A/P tilt helps our users with transfers, added reach, and allows them to get closer to a table or workspace.

I feel having a seat lift is mandatory for someone living with Kennedy's Disease (SBMA) and I am impressed with the 12” seat lift. “The new seat elevator utilizes 3 points of contact and shifts the seat rearward as it elevates to maintain an unimaginable level of stability even at full elevation. This allows individuals to get closer to tasks while providing faster and higher elevation.” 12” is nice – it really gets you up there while still feeling stable. The fact that the lift motor is three times faster than the C300 is even nicer. 

Many things are similar to the C300 as well as some nice new additions or enhancements. Stability seems much greater, even though the C300 wasn’t bad. The Corpus seating system (3^rd generation) is even nicer. The footrests are lighter. I could go on, but I need to mention the other side of the coin.

And, as with most everything, there are a couple of things that I do not like as much. The armrests, for example, are ¾” wider making the chair 1½” wider at the arms. The first few days I was scraping doorframes right and left and couldn’t figure out why. The rear wheels need adjusting. They are not as smooth when backing up or turning as the C300 right now. 

Because of all the combinations of seat height, leg rest position, back and seat tilt, etc., I am checking into a memory option that will keep three positions for enhanced ease of use. As I use the chair more, I’ll keep you advised as to my thoughts on the chair.

Evaluating your mobility needs

At some point when living with Kennedy's Disease, the time might come when you have to consider a wheelchair.  I would recommend that you take more time researching the type of chairs, configurations and options available than when you buy a car. Why … because at some point you will spend more time in the chair than you do in your car.

It is also important to consider your current and future needs. The worst thing you can do is purchase a chair based upon your current needs and find out in three-to-five years that the chair no longer satisfies your mobility needs. It becomes very expensive to have to buy another chair in a couple of years because it no longer supports your mobility needs.

I have written about the importance of seeing a ‘seating specialist’ to help evaluate your current and future needs and also show you, and allow you to test drive, the options available.

Another KD’er told me about this website that has helpful information, videos and other considerations for selecting the correct wheelchair (manual or power). I perused through the site and found the videos and comparisons quite helpful. The videos help you see a chair being used and its potential limitations.
 

• For an overview on several potential chairs including 32 videos: http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.8124165/k.D9D4/Power_Wheelchair_Comparisons.htm
• For a comparison chart of these chairs:
  http://www.christopherreeve.org/atf/cf/%7B173bca02-3665-49ab-9378-be009c58a5d3%7D/WHEELCHAIRCOMPARISONCHART.PDF

Other articles that might be of help:

• http://kennedysdisease.blogspot.com/2009/11/what-heck-is-seating-specialist.html
• http://kennedysdisease.blogspot.com/2011/11/wheelchairs-what-is-right-for-me.html
• http://kennedysdisease.blogspot.com/2010/01/power-wheelchairs-and-medicare-part-i.html
• http://kennedysdisease.blogspot.com/2010/01/power-wheelchairs-and-medicare-part-ii.html

Wheelchairs … what is right for me?

Quest Magazine always seems to have some great articles.  Their October edition had one called, “Front, Middle or Rear … Finding the Power Chair Drive System that’s Right for you.”  For anyone in need of a wheelchair, new or replacement, this article is a good read.

  I remember when I upgraded from a mid-wheel to a front-wheel drive.  It was totally different.  I tend to like it more in many ways, but it took a little while to get used to just because of my experience with a mid-wheel.

Work with a specialist

Kathy Wechsler wrote that it is best to work with a certified rehabilitation technology supplier (CRTS) as well as an occupational or physical therapist who specializes in wheelchairs.  They will perform an assessment and evaluate your particular needs and capabilities.  She also recommends that you ask a lot of questions and not to quit asking until you feel comfortable with the answers you are getting. 

Consider your needs and ask a lot of questions

Since you want to have a chair that accommodates your lifestyle as best as it can, consider the following:

• The size and setup of your home, office and your wheelchair accessible vehicle (if you have one). 
• Also, do you spend a lot of time outdoors? 
• The width and turning radius of your chair … will it accommodate your doors and turns within your home?
• The suspension system of your chair … this is especially important it you plan on spending a lot of time outdoors.  Usually front and rear wheel drive units perform the best.
• How is the weight distributed on the chair?  Rear wheel drive chairs, for example, put a lot of weight on the casters and this often causes problems.
• What kind of obstacles and inclines will you encounter during normal use?  Front wheel drive units perform the best for curbs, grass, gravel, snow and uneven terrain.  Mid-wheel drive chairs can get hung up easily because they have front and rear casters.  On the other hand, mid-wheel drive units are usually the most stable on inclines and declines for the same reason it is a negative for different terrains.  Normally, rear wheel drive units are the least stable on inclines and declines so it is important to have anti-tippers on the rear.
• How fast do you need to go?  For speeds up to 5 mph, all chairs perform well.  For higher speeds, the rear wheel drive chairs are more stable.

As you can tell, all three models of chairs have their pros and cons.  That is why it is important to get a personal evaluation and assessment as well as to ask a lot of questions.  The author mentions that you should “go with your gut” and not what seems to be fashionable or trendy.