Many Mistakes and Many Learnings

Since Kennedy’s Disease is a progressive neurological disorder, your capabilities and needs will change over the years. I found that quality of life decisions are an important factor in how we view our condition. Fortunately, there are tools that will progressively provide greater support and mobility when you need it. Unfortunately, if your ego is anything like mine, it gets in the way of your timing, purchase and use of these tools.

Cane: I should have started using a cane way before I did. If I would have, there would have far less falls, and a few less injuries. Using a good quality cane, sized correctly, would have been an easy transition; yet, my ego would not let me use one. It took a broken fibula to force me to try using one. Once I started, I loved it because it provided me with greater confidence and more support.

Tip: The cane should be adjusted to the proper height so that your forearm is bent at a 25-30 degree angle when the cane is parallel with your leg (straight down your side). The cane should have a grip that is easy to hold on to and an end-tip that does not slip. For better balance while walking, look straight ahead (not down).

Walker: A walker should have been another easy transition, but … my darn ego got in the way again. I could not picture myself using a walker under any circumstances. It took another serious injury before I progressed to using one. I also found that I did not need the walker all of the time, but it sure was a useful tool when I needed it.

Tip: The walker height should be set so that your posture is upright and your forearms are bent at a 25-30 degree angle when grasping the walker. The walker is meant for balance, not for holding up your weight. For better balance while walking, look straight ahead (not down). Tennis balls placed on the end tips help improve traction on slippery surfaces.

Scooter: A scooter was far easier for me to accept. Even though a wheelchair would have been a smarter purchase at the time, I could not envision myself in a wheelchair. Somehow, however, I could see myself using the Evil Knievel endorsed four-wheel scooter. I figured anybody that could jump over twenty school buses or attempt to jump across the Snake River in a rocket sled must know something about scooters. I wanted something that would allow me to go with my wife when she went for walks. I needed a scooter that would take me back into the wilds of southern Pennsylvania.

Unfortunately, I did not use my head and spend a few more bucks for a model that would be more versatile and allow me to go into the woods without getting consistently stuck. Now that would have been a worthwhile investment. I also learned quickly that a scooter is not very good indoors—poor turning radius. In addition, it is much more difficult to transport. In the end, my Evil Knievel special did not allow me to jump anything … not even a small branch in the path. Bummer!

Wheelchair: It took a broken tibia and fibula before I finally progressed to a power wheelchair. This was a good investment and well worthwhile. We also bought a platform lift (another good investment) that lifted the wheelchair into the van and actually charged it while in transit. The wheelchair allowed me to go for walks with my wife and attend community events (both indoors and out) without the fear of falling or becoming too fatigued. I no longer slowed down the other walkers and normally they wear down before my battery does. Being able to travel 25-30 miles on a charge and cruise around at 5-6 mph works well for almost any situation.

Once again, however, I missed the boat by not thinking 3-5 years into the future. Even though the wheelchair opened many doors (opportunities) for me, a little more research and a few more bucks invested up front would have really made a difference. For example, the ability to elevate the seat to make it easier to stand up.

By now, you should see the pattern. I waited too long, did not consider my needs thoroughly—especially 3-5 years out, and placed price above needs. Through the process, I learned several things that I want to share with you.

#1 - Do not wait until you are injured to consider a mobility aid (cane, walker, scooter, or wheelchair). With the right mobility equipment, your life does not have to come to a stop.

#2 - Do not just consider your current needs. Take into consideration your future needs—what you might need in the next 3-5 years. Then, look at what you have recently given up because of your safety concerns. Are there devices or options that will allow you to enjoy life a little more fully. For example, if you can no longer stand for long periods of time, would a chair that has a seat that rises up be helpful? It allows you to be eye-level with others in group settings. Do you need a chair that can climb a curb, stairs, or be capable of cruising through the woods? Almost anything is available today, but it comes with a price.

#3 - Do not just consider cost. You are talking about your safety, lifestyle, and future mobility. A few extra bucks spent upfront could make all the difference in the world to your safety and happiness.

#4 - Do not be afraid to negotiate. As mentioned, a scooter or wheelchair is a major investment. If you have done your research, shopped around, and considered all of your options, you will know what the best deal is.

#5 - Do ask for advice from others. Many of us have experience with the equipment you are considering (options, makes, models, maintenance, etc.) I saw a seating specialist. She determined my needs now and in the future. She let my try several different chairs, several options, and several types of seats. It really made a difference in my confidence level.

#6 - Do consult with a physical and occupational therapist. For scooters and wheelchairs, we are talking a major investment (even if the insurance company pays for most of it). For canes and walkers, therapists know how to adjust them correctly and what you should be considering. Their expertise could be very beneficial as well as save you some grief down the road.

#7- Do shop around. The internet is an excellent place to check on prices, options, models, and suppliers, but it is not the only place. Visit a show room and ‘test drive’ the models you are considering.

#8 – Do consider used equipment. Previously owned mobility equipment is an excellent option, especially for a first time user. When considering used equipment, have a qualified person inspect it before sealing the deal.

#9 – Do consider who will service your mobility equipment. No matter how good a deal you get, if you are stranded somewhere, it is no fun. Ask for recommendations from other users. If you do decide to buy online or from some out-of-area supplier, talk to a local company to see if they will service (both warranty and other maintenance/repairs) your scooter or chair. 

#10 – Do check to see what your insurance provider or Medicare will pay for. Medicare, for example, will not pay for an elevated seat option. Without it, however, I am reliant on others to help me transfer. So, I am willing to pay for this option.

I hope this is helpful. If you have other suggestions or questions, please do not hesitate to comment. Remember, safety is job #1.