Showing posts with label adapting to decreased mobility. Show all posts
Showing posts with label adapting to decreased mobility. Show all posts

Monday, February 19, 2018

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.

Saturday, February 11, 2017

Another interesting mobility device

I came across this link for the Tek-RMD on the KD-UK Facebook page. http://www.matiarobotics.com/tek-rmd.html

The device has some interesting features. What interested me most was the one video where the man was able to sit down in an ordinary chair. It has been a couple of years since I gave that up. I do miss the recliners and watching television from an easy chair. They are definitely more comfortable. It would be great in the kitchen, especially with the higher cupboards. I liked the remote control option. You can park it somewhere else after you have transferred to a bed or chair. I am also curious how stable it is. And, could you comfortably sit back in the seat strap?

Operating Information:
  • The maximum grade of climb is 3%
  • The range is 3.7 Miles (6km)
  • Load Capacity 264 lbs (120kg)
  • Turning Radius 23.6″ (60cm)
  • Weight (empty) 242.5 lbs (110kg)

Potential Issues:
  • The small wheels might not work well on carpets or safely drive over small ridges/bumps
  • Throw rugs might bunch up when turning
  • It is currently designed for a paraplegic
  • Hand and arm strength is required for self-mounting (how much arm strength)
  • What kind of pressure does this place on your leg joints?


I will definitely bookmark this webpage and continue to follow the evolution of the device.

Sunday, January 29, 2017

A New Walking Assist Device

I am always looking for the latest and greatest device to make life more manageable. The other day I received an email from a KDA board member that caught my interest.

The website has several videos showing the device being worn by different people. Keeogo appears to be an 'assisting' device. The ability to maintain your balance is important.

Today's technological capabilities continue to move closer to a true mobility aid for those of us living with a progressive neuromuscular disorder. And, eventually, I hope healthcare providers will recognize the importance of these devices for maintaining quality of life.


Hello all,
I was at a abilities show today and came across  a device that
I am very excited about. It was developed by a Canadian firm 
and seems to be similar to the Honda device that is in 
development. It is currently on the market in Canada selling 
for about $45,000. Hopefully this price will come down 
substantially as these devices are mass produced. I have 
provided a link below for you to view a video of the device. 



Thursday, August 18, 2016

The Journey – Finding the Spirit to Continue On

I have written about the journey several times over the last six years. It would have been interesting if I started this blog while I was in the early days of learning to live with Kennedy’s Disease. I am certain my perspectives have changed dramatically – hopefully for the better.

Regularly readers contact me or comment on a post. I love hearing from you because it reinforces that we are all in this together. We reach out when we are in trouble. We help whenever we can. We learn from each other. And, we share that knowledge with others who are also finding their way in this new world.

Last night while transferring from my chair to the bed, I flashed on how accepting I have become of this evolutionary process I am experiencing. My daily routines are much the same, but they have been modified many times to accommodate my capabilities. When a loss of a capability first happens, there is always some frustration and angst. After the initial, “Oh no, not that too,” follows with a period of experimentation. Can leverage solve the problem? Can a tool or aid help? If none of the experiments work, the next question is can my wife do it?

Someplace in the middle of this process of discovery, I end up asking two questions –
“How important is it?”    
“What if I can’t find a solution?”

Initially, there is often the belief that I’ll never be able to survive without that. I call it the end of the world scenario. This was especially apparent when I could no longer perform the work that I loved. Somehow I survived and life went on. 

Through the forty years of the progression I learned a valuable lesson. My spirit is a lot stronger than I ever imagined. And, if my spirit is willing, I will find a way.

Acceptance allows the spirit to remove most of the stumbling blocks we face. Once they are removed, the spirit finds a way to move on with our lives. There is an old adage that is appropriate. “When life gives you lemons, make lemonade.”

There is another one I like from Alexander Volkov. “Your journey never ends. Life has a way of changing things in incredible ways.”


If you believe this, then EMBRACE THE JOURNEY.


Wednesday, July 20, 2016

Adapting to the Times

I find it interesting to consider what life must have been like for my mother’s brother. He was the first known case of Kennedy’s Disease in our family. At that time, he was diagnosed with muscular dystrophy because doctors didn’t know about Spinal Bulbar Muscular Atrophy

His family lived on a farm in South Dakota. I’ve seen pictures of him in a wheelchair next to a two story farmhouse with five steps leading up to the porch. All the bedrooms were on the second floor. Outhouses were often the only facilities available, especially in the winter when pipes froze up. If you were wealthy, you might have a bathroom in the house.

There was no such thing as handicapped accessible around the farm or in town. No ramps, steps everywhere, few sidewalks and plenty of gravel or dirt roads. Wheelchairs did not appear to be very comfortable and many didn’t even fold up. The first commercially offered electric powered chairs didn’t appear until the 1950s. I envision the term ‘caregiver’ taking on an entirely different perspective in those days.

Somehow my uncle managed to maintain a reasonable and meaningful life.

Today, it is easy to complain about a business not handicap accessible, Or, one just modified to the minimum guidelines of the law. And, it is frustrating when no handicap parking is available.

I have written about ‘adapting’ in earlier posts. We adapt as the motor neurons die and the muscles atrophy. We don’t like what is happening. We often complain. Yet, if we are to maintain a meaningful life, we still must adapt.


I am just thankful that I live in a time where being handicapped is far less restrictive.

If interested, below are several posts on Adapting: