Leave Your Pride at the Door

 

While considering a topic for my blog, the word COMPENSATE came to mind. One of the definitions of compensate is “make up for (something unwelcome or unpleasant).”

The other word that comes to mind is LEVERAGE. One of the definitions of leverage is “use (something) to improve or maximize your advantage.”

All of us living with Kennedy’s Disease have become familiar with these two actions. Early on, it wasn’t difficult to hide the onset of certain symptoms. As time marched on, however, it became more difficult to compensate for the eroding muscle strength and errant firing of the motor neurons. That is when leverage became more important.

At some point, we start using a cane or walking stick (leverage). As the condition progressed, the danger of falls became more evident. We slowed our gait (compensate) and fatigue became an issue. Later, when walking became a safety issue, we began using a scooter or wheelchair (compensate). As the arms, shoulders, hands and fingers weakened, we found tools to help (leverage), or utilized exaggerated movements to help perform even simple tasks (compensate).

It is said, “Necessity is the mother of invention.” Through the years, those of us living with Kennedy’s Disease have found ways or invented things to help compensate for, or leverage something, to help us remain mobile and as self-reliant as possible. I am amazed at all the ‘tools’ that have been re-purposed so that we can continue to live a productive life.

Then, there also comes a time where we have to swallow our pride and ask for help. By asking, we again compensate for the loss of our ability to perform a certain function. Fortunately, there are plenty of good people in this world.

For those of us living with Kennedy’s Disease, we should have a sign in our bathroom saying, 

“Leave your pride at the door. 

Everyone needs help at some time.”

Please, stay upright and stay safe.

Still lots to learn

Living with Kennedy's Disease provides an opportunity for learning more about life and myself every day. 

I believe "nothing comes into existence uninvited." Everything that happens in my life is a potential learning experience depending upon how I respond to the situation. 

I further believe these erroneous beliefs and misconceptions I carry with me are tested repeatedly until I eventually understand and accept reality. If I react negatively to someone's actions, it is because I still have not fully accepted that everyone is fighting his or her own personal battle.

The quotes below are from Maya Angelou, a well-known and respected author and poet.

I've learned that…

• No matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. 

• You can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. 

• Life sometimes gives you a second chance. 

• You should not go through life with a catcher's mitt on both hands. You need to be able to throw something back. 

• If you pursue happiness, it will elude you. But if you focus on your family, your friends, the needs of others, and doing the very best you can, happiness will find you. 

• Whenever I decide something with an open heart, I usually make the right decision. 

• Even when I have pains, I do not have to be one. 

• I still have a lot to learn. 

The "life goes on, and it will be a better tomorrow" comment above is similar to one of my favorite sayings, "This too will pass." My father use to remind me when I was a teenager, "it is not the end of the world," when I would over react to something negative in my life. Even though I did not want to hear it at the time, he was always right. 

In addition, the "decide something with an open heart" comment above goes hand-in-hand with Plato's quote that "everyone you meet is fighting a hard battle." Just recognizing that everyone is tested in his or her own unique way makes it easier to "accept the situation and move on."

Ms. Angelou has many wonderful quotes and sayings. One I particularly like is "a bird doesn't sing because it has an answer, it sings because it has a song." I hope you understand I am singing today even though I still do not have all the answers.

One thing is for certain, "I still have a lot to learn."

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.

Anyone for a game of Jenga?

In the right column of this page is the following explanation as to how I see “living with Kennedy’s Disease.”

"Life is a succession of lessons that must be lived to be understood." I have used the analogy that learning to live with Kennedy's Disease is like trying to cross a stream without getting wet. The only way is by using the stepping-stones provided (my chosen life's path). Each step is a "life experience" and I must come to terms with that experience (regain my balance) before being able to take the next step. It is a slow and often challenging journey, but I am finding it very fulfilling.

Now that I have difficulty safely walking, the analogy just doesn’t seem to fit my situation any longer. Recently I changed the photo at the top to a stack of stones. I felt the balancing act of creating a new world, a new way of living, was more relevant to my current situation. If I replace one stone with another and it doesn’t fit well, it could come crashing down.

The ability to live with Kennedy’s Disease, or any other progressive neuromuscular condition, requires constant adaption and acceptance as the disease progresses. For example, instead of requiring a cane or walker, you now require a scooter or wheelchair. Instead of getting by, it becomes a matter of constant adjustments to your daily life and routines. At some point, it is no longer about substituting or leveraging; it is about knowing when to ask for help, and how to let go of certain treasured capabilities. 

This morning I remembered playing the game of Jenga with family and friends. For those who haven’t played it, Jenga is a bunch of wooden blogs that are stacked about 12” tall at the beginning of the game. Players take turns and remove (pull out) a block. You don’t want to remove a block that causes the entire stack to crash. 

Living with a progressive condition is like playing Jenga – only you are the stack of blocks. When a block (capability) is removed, you have to adjust (adapt) to maintain your balance. At some point, you can’t make adjustments and you have to cling to the other blocks in hopes the entire stack (your self-worth and beliefs) is still strong enough to hold together. The minute you give up those essential elements of life, you risk crashing. As the condition progresses, more often, the other blocks are your family and friends. They step in (understand, adjust and adapt) to keep you standing. 

Treasure those other blocks that help support you when another block (capability) is weakened or removed.  

Yes, there is no cure, but …

After, “Is there a treatment or cure?” one of the most frequently asked questions that the Kennedy’s Disease Association receives is, “What can my husband (or friend, or father) do to help ease his symptoms?”

There are some commonsense principles that can help minimize the impact of certain symptoms as well as maintain, or improve, your quality of life. Some of these are also good for your general health. A few examples follow:

• Stay active – This is the best way to maintain your quality of life. Keep engaged in activities that stimulate your mind, spirit and body. Look for new activities and hobbies that will be interesting and keep you active.
• Stay engaged – Maintaining a support system is critical to your mental and emotional health. Family and friends help keep your mind stimulated. A good laugh is one of the healthiest activities you can participate in.
• Maintain a healthy weight – The more weight you carry, the more difficult it is to remain active and mobile. Excess weight also impacts your heart, lungs and joints.
• Exercise regularly, but smartly – Some exercise is good, but too much can be detrimental. I have found that performing light exercises every day minimizes or eliminates joint and muscle pain. It also stimulates my heart and lungs as well as my motor neurons and muscles. There is a ‘Smart Exercise Guide’ on the KDA website you might want to review. Ask your doctor to recommend a physical therapist who is familiar with progressive motor-neuron diseases. There is also a six-part series on easy exercises that can improve your ‘quality of life’ as the disease progresses.

The second best advice I can give is:

If you aren’t already active or engaged, “don’t try to add too much into your daily routine all at once.” Habits need to be changed over time.

 

• Discuss and prioritize the above opportunities with your family and friends.
• Select the highest prioritized opportunity. 
• Transform the opportunity into an activity that you feel you would enjoy doing.
• Develop a plan on how to implement the activity. Write the steps down – visualize them. Note: If you have other health issues, check with your doctor before implementing any exercise program.
• Ask for support from those who are willing to help. An exercise partner, for example makes the task more fun.
• Implement your plan.
• Track your results and review weekly how you are doing.
• If necessary, adjust your plan.

After thirty days, start the process again with the next highest prioritized activity. Thirty days later, add another one in. Within no time, you will be active, engaged, have more energy and feeling better.

The best advice I can give is:

“Stay safe." 

• Pace yourself
• Don’t overdo
• Try to make it fun.”