Stumble, Tumble, Trip and Fall is how I began to think about walking when I realized that my Parkinson’s Disease was causing me to trip, stumble and nearly fall. To passersby I probably looked like a bumbling old fool; I certainly felt like one. More than once I was taken as a drunk although I had drunk little or nothing. I was developing postural instability, a bad sign since it usually is an indication that the disease is moving into a later stage on the declining glide path to the wheelchair.
I have selected walking as the first topic to discuss my personal problems and solutions because I view walking as one of the most challenging problems facing PD patients in the later years of the disease. Of the five defined stages of PD, difficulties walking typically first manifest themselves in Stage Three and become totally dominant during Stage Four, significantly limiting walking and standing. Based on my experience and to my knowledge, of all the motor skill failures, it is the least treatable. All PD patients who make regular visits to a Parkinson’s specialist are familiar with the routine walk down the hall, return, and then get jerked by the shoulders in a sudden effort to cause you to fall. This test is the “pull test, ” and you hope that either you are strong and stable enough not to fall or the movement specialist is strong enough to hold you up. I am not sure what it measures, how to scale it or how to define a trend. It seems like a pass or fail test. I have not failed yet, so I do not know what is next when I do.
It was the spring of 2014, and I had taken a few bad falls in recent months: walking was becoming dangerous. During a long layover in an airport lounge, my fascination grew as I observed a mother with a young child. The child was just learning to walk, and the child’s gait resembled my behavior during my middle-of-the-night walks to the bathroom. The sequence: A small first step, shaking legs, a rise on the toes and a sudden crash to the floor. After a few falls, the child learned to grab every available piece of furniture to move from one place to another. This pattern is my nightly routine, but I rarely fall anymore as I have learned how to control the shaking legs, stay off my toes, and hang on to the furniture. When I say I have learned how to control the shaking legs I do not mean my legs do not shake; they do. However, I have learned the shaking legs signal danger. To avoid a fall, I must focus, take a deep breath, try to keep my heels on the ground and take a big step.
It is totally unnatural to have to think when you walk. Before PD I never consciously thought about walking; I just walked. I have come to believe that part of the walking process is automatic and does not necessarily require the conscious brain, but another part of the walking process needs the brain. Three factors have led me to this conclusion. First, I can walk much better after my medicine, carbidopa levodopa, is fully in my system and thus I conclude that the brain plays some function in walking. Second, if while I am walking someone starts talking with me it greatly increases the probability that I will fall, or at least nearly fall, and a distraction would not affect my ability to walk unless my brain must focus on walking. And third, before PD, I could walk and run and carry on conversations, or even multiple conversations and never fall or even think about falling. Thus, we who suffer from Parkinson’s Disease must undertake the process of walking with intention; you walk because you plan, you think, and then you move. I have reached the reluctant conclusion that PD patients can walk, or talk, but to talk and walk at the same time is to risk a fall because the mind is not focused solely on walking. This discovery made me sad since walking and talking with friends is pleasant; but walking, resting to talk, and then resuming the walk is workable once your companion understands.
If you search the internet for “walking is controlled falling” you will discover much discussion. The following sequence describes the process of walking:
- Move one leg forward as if to take a step.
- As you take this step, heel down first, lean forward a little and start to fall.
- Before you fall, your outstretched foot stops you from falling.
- In the process of falling your body weight shifts to your outstretched foot as you move your foot from heel to toe and bend your knee.
- Now bring your rear leg forward, and your outstretched front leg causes your body to lift and move forward.
- Now back to step one.
For PD patients, the most crucial part of this entire walking process is that the initial step is a big step and that you place your heel down first. Every PD doctor I have met has said so, and it works. Also, use nearby furnishings as handholds. But what if there is no furniture to grab? Early in the disease, you do not need anything to hang on to since the very process of focusing on how to walk improves your balance and aids in avoiding the shuffling tendency which, sooner or later, results in a fall.
This year, 2017, marks the twelfth year since my diagnosis and the nineteenth year since I began to show what I now know to have been the early signs of Parkinson’s Disease. Except for the first year, I have visited the same two movement specialists at two prominent New York City teaching hospitals three to four times a year. I usually spend a long time in the waiting room, so I study and sometimes talk with the continuous stream of PD patients and often their caregivers, too. Nearly everyone has a caregiver or family member with them. I still can go alone.
I focus on locomotion. Do the Parkinson’s patients walk? If so, do they use a cane or a walker? Do they look over 70 or under 40? The older the patients, the poorer their posture. Many are so bent over they look like an inverted “L.” The typical spectrum of walking support goes from cane to walker, to a wheelchair as the patient ages by the calendar year or by stage of the disease. I noticed this “L”-shaped, bent-over look very early in my doctors’ visits, and it scared the hell out of me. I may never hike in the White Mountains again, but it sure would be nice to walk in the park and see the trees instead of the grass.
Figure A
The typical PD patient who starts to have problems walking buys a cane. Figure A, above, is me with an adjustable aluminum cane and Figure B, below, is me with a slightly shorter collapsible cane I use for airplane travel. Notice in both cases the cane provides a handle for a grip which the user must grasp from the top, so the body weight is a downward force on the cane. The arm becomes a vertical extension of the cane and in most cases, requires you to lean over the cane causing your body posture to be forward and round-shouldered. Notice that if you wish to make a big first step, the cane provides little or no support because it is slanted and you cannot safely put weight on it at an angle (see Figure B). The problem with canes is that they encourage you to shuffle and, in doing so, to hunch over the cane so you have support.
Figure B
In Figure C, below, I have “graduated” to a simple walker, suggesting my postural instability has worsened, and I am unable to walk safely with a cane. Notice that with the simple walker I still must walk bent over and it is impossible to take a first big step because my support system is out in front and I cannot safely move except with a shuffle. Thus, while the simple walker provides two-handed, sturdy support while standing, to move, you must shuffle and push the walker slowly ahead of you. This arrangement is acceptable for short distances. I use a walker for nighttime trips to the bathroom where the walk is long, and no hand holds are available.
Figure C
To conclude, both canes and simple walkers make the first big step either dangerous or impossible because the support system is inadequate. You do not walk or stride, with these devices, you shuffle. They encourage the inverted “L”-shaped, round-shouldered posture that you associate with PD patients. Canes and the simple walker are, however, inexpensive and portable.
Despite my unhappiness with walkers in general, I believed there must be a way forward between the canes and the wheelchair. My conclusion is that two solutions may work, depending on the patient’s strength. Also, they are not mutually exclusive, as you will see.
In my search, I decided that the perfect walker would be somewhat like an off-road vehicle. It would have big wheels, front and back, to handle bumps and uneven terrain. Ideally, the handlebars would be adjustable, permitting the patient to stand erect, and, most importantly, it would be designed to support a big first step and stride, not shuffle. It would have good brakes, a place to sit down with a backrest and a place to store necessities like medicine, a bottle of water, or a rain jacket. Of course, there are several suitable models; I show you the one I bought in Figures D, E, and F, below. In Figure D I am striding and the handlebars are adjusted to permit me to stand tall (note the big wheels). In Figure E I am seated, leaning back against a sturdy brace. Finally, in Figure F you see the walker at the airport; on the right side, my collapsible travel cane is visible. This model has a handy place to hang a cane.
Figure D
Figure E
Figure F
I wanted to see how difficult it was for me to travel with such a big walker. First, I should say that while it folds flat, it is still large and heavy and takes up much space in a car trunk. In preparation for my flight, I bought a luggage tag and two sturdy Velcro straps to fasten the legs together during travel. I planned to wheel the walker, loaded down with my backpack and carryon bag, through security to the gate and then out to the airplane, where I would gate-check the walker. Upon arrival, I would pick up my walker at the jetway entrance, load up my gear and stride out to the taxi stand. And that is exactly what I did. This far sturdier walker offers many advantages over the simple walker. Its disadvantages are its bulk, weight, and cost—four to ten times more than a basic walker. Thus, I conclude that if you need a walker to feel safe when walking around your home and outside, save your money and choose a model with the features I discuss above.
My postural instability was progressing, but I was not ready for the full-time use of either a walker or a wheelchair. I concluded there had to be an intermediate solution. My problem was, and still is, that I needed a walking aid that allowed me to stand tall, permitted the first big step so I could stride and not shuffle, and was highly portable for everyday use. There had to be a better way.
Let’s go mountain climbing! Geez, I cannot tell you how much I miss the White Mountains of New Hampshire and walking up the north side of Mount Madison to spend the night in Madison Hut. The next day I would walk over to Mount Washington, spend the second night at the Lake of the Clouds Hut and then down the mountain through Tuckerman’s Ravine and into Pinkham Notch for a nice hot meal with the other hikers. It was that kind of wishful thinking and feeling sorry for myself that got me pondering. When I hiked in the French Alps, from the late 1980s to ca. 2004, I always used two hiking sticks, but I never used them in the Whites. I occasionally saw hiking sticks in the Whites—in the hands of European hikers. Why, I wondered, were hiking sticks a European phenomenon?
I pondered this question during a recent annual vacation to Chamonix, France. So, I dug out my two old hiking sticks and went outside for a village stroll. Forget the cane! This was nirvana. I could take the big first step, felt completely secure, and as my weight shifted from one foot to the other, I continued to feel secure. Look now at Figure G, showing me taking the first big step with two hiking sticks. Notice my hands are gripping the sides of hiking sticks, not the tops, and my arms are at right angles to the sticks. If the sticks are at a 90-degree angle to the ground, the arm is parallel to the ground. In Figure H I am holding only one hiking stick, again demonstrating that the arm should be parallel to the ground when the stick is vertical. The angles matter because unlike the cane, where your arm is downward on top of the cane as an extension of the cane, the hiking stick allows you to stand tall and stride. When I take my first big step, Figure I, my arm stays at a 90-degree angle to the stick, and my body weight is shifted down the stick. As I push through with my left foot, heel to toe, bend my knee and roll up on my toes, my hiking stick pivots from an angle to vertical, supporting my body weight as I bring my right foot forward, heel first.
Figure G
Figure H
Figure I
As I practiced walking around the village of Chamonix with two sticks, I recalled seeing many a hiker using only one stick, so I tried that. At least for now, one stick provides as much stability for me as two, and the one-stick approach frees a hand to pull a suitcase or grasp a handrail when walking up and down stairs.
When you walk with one or two walking sticks instead of a cane or walker, you can safely take the first big step, and thus avoid the shuffle and reduce the risk of falling. Walking sticks have another huge advantage over the cane or the simple walker: holding the stick with your forearm parallel to the ground forces you to stand tall. Standing tall greatly reduces the “L” shape tendency.
Despite using the walking stick every day, I still have a tendency towards rounded shoulders and a slight forward lean. Again, I returned to my backpacking and mountain experiences. I bought a backpack for my computer, books, and papers that I lug daily between home and office and on business or even vacation trips. I went from a briefcase in my left hand and the walking stick in my right hand to a backpack. This change accomplished two things. First, with nothing in my left hand, I was not lopsided, and walking was easier and safer. Second, the backpack pulled my shoulders back slightly and improved my posture. When I first showed up at one of my PD doctors’ offices wearing my backpack, he was shocked at how heavy it was. When I explained the rationale, he chuckled but clearly thought it interesting. It has been about two years since I started my daily routine of one walking stick and the backpack. While I still have poor posture, it has not deteriorated. I can still see the trees and must look down for the grass.
There is one point I should make if you plan to travel by airplane. The TSA prohibits hiking sticks in aircraft cabins. One hiking stick was confiscated at JFK, and I have packed them in my checked luggage ever since. This TSA requirement is inconvenient and requires me to carry a collapsible aluminum cane for walking in the airport, through security, and on and off the plane. Hiking sticks are prohibited because, underneath the sturdy rubber tip, my hiking sticks each have a sharp metal point for walking in the mountains or on icy winter streets. Hiking sticks are great weapons, which may be another attractive feature for fans of walking who fear appearing vulnerable.
If it is possible, walking is a great form of exercise for Parkinson’s patients. The benefits are keeping the legs strong, learning to focus on intentional movement, and trying to stand erect. I also believe the very process of walking for physical exercise improves the functioning of the brain. It seems to clear my mind and improve my spirits. That said, PD sufferers face unique risks while walking. For example, I always try to take stairs instead of elevators if it is only three or four flights. Stairs are safer than crowded elevators where everyone is eager to either get in or out of the elevator. Hurried crowds can be dangerous for PD walkers, as the slightest little accidental push or shove can cause a fall. I find the streets of big cities during rush hour especially dangerous as everyone is simultaneously rushing and texting or talking on his or her cell phone.
In conclusion, I have found one or two hiking sticks, when properly used, are superior to canes and simple walkers. Canes and simple walkers discourage the big first step and encourage bending over and shuffling. If this posture is your everyday habit, then eventually you shuffle like an inverted “L” and focus on your feet and the grass instead of the trees and the way forward. I understand that some people are too weak to use hiking sticks and must use walkers. I would encourage such patients to obtain two hiking sticks and practice at home to see if it is possible to walk safely with two hiking sticks. If the patient is not strong enough to safely walk with two hiking sticks, then I strongly encourage the purchase of a more expensive four-wheeled walker with hand brakes and seat like the one shown in Figure D, E and F for all the reasons discussed above.
I believe all walking is partly a brain function and partly automatic. Thus, walking should not be undertaken except when the proper medicines have been taken, the patient can focus on the intentional movement to be done, and the patient is not distracted by a companion trying to carry on a conversation.
Finally, I find that for me to be safe upon arrival in a large airport, I require a wheelchair to take me to baggage claim, especially after a long or an overnight flight. Safe travel is a challenging accomplishment for PD sufferers when they cross multiple time zones to arrive either late at night or early in the morning. Walking is precarious because your body clock is out of sync and your medicine is off schedule. I will discuss this problem of time travel and medication in a future blog.
Information about the five stages of Parkinson’s Disease is available here.
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