Sunday, February 5, 2017

Trouble Climbing Stairs?

Paul Lazenby posted the following on Facebook. I thought he did a nice job of explaining what happens as our lower motor neurons and muscles decline in performance. Thanks, Paul, for letting me post this.


Trouble climbing stairs ... perhaps the most common symptom of Kennedy's Disease. We are all guilty of saying yup that's me and not giving it much more thought.

Have any of your care givers explained to you why it is an early symptom? How just accepting it will lead to further symptoms? or what you can do to mitigate its future effects?
I'm not a doctor or a physio therapist, but I can give an overview as I understand it, and you can take it to your own doctor or physio team and have a good chinwag.
KD causes our muscles to degenerate even as the neurons begin to be plugged with aggregates.
Research has shown that the shorter the axon (that's the long stringy bit that goes from the nucleus to the neuromuscular junction), the quicker the loss of function. The psoas have perhaps the shortest axons of all. They attach at the spine and along with the iliacus muscles (attached to the hip bone) they combine to become the iliopsoas which attach to the femur. They are our only muscles which join our spine to our legs.

They have been called the most vital muscles in our body, helping us to rise from a seated position, elevate the knee for climbing, and as the ligaments of the diaphragm wrap around the top of them, they even aid in our breathing and our 'fight or flight' response
Together this means, as we all know, that the iliopsoas get damaged early on and we have trouble climbing stairs... but damaged is probably the wrong word. They lose some of their stretch.and have a harder time returning to their relaxed state. Most muscles work in pairs (think triceps and biceps), one pulls and the other relaxes. One of the iliopsoas' functions is to support the spine so we don't have an anti-support muscle to specifically pull it back into a relaxed state; we have to stand, stretch and move. If we don't, that group of muscles gradually shorten. Sleeping in the fetal position, sitting for prolonged periods, riding bikes and driving (especially bucket seats) all shorten the iliopsoas. For us the process is just sped up
Fortunately, just as we can abusively shorten them, we can take ourselves out of automatic, and manually stretch them back into a more relaxed state, working with certified people to regain more fluid movement even with reduced strength. We are all familiar with the emaciated, hauntingly thin yogi masters able to tie themselves in knots; they do not have a great deal of strength, but they do have flexibility and balance. It has been shown that the AR in our muscles induce a loss of force, but not mass (in other words they have changed, but are intact). As our disease progresses we may need extra help to achieve that flexibility and balance, but I think its worth it. 

 The benefits of being able to stand and walk, even short distances goes well beyond just going from point a to b, (devices will always do that better than man), the downward pull on the front of the lower spine allows many muscles at the back of the body to lengthen and tone upwards providing support for the head; that gives our bulbar muscles a break and aids in swallowing.
Please, Talk to your team

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  1. Unfortunately, many of us do not have a "team" of physical therapists, or if we do have a "team" they don't know much about KD since it is a rare disease.

    This article would be much more useful if you added the names of the exercises in question, so we could discuss them with our doctor or PT. Without specific information, the article is just a useless tease.

  2. Dan, I choose my attitude in every situation.

    I published Paul's article as a resource for those living with KD. A doctor or PT might find the information useful and helpful in prescribing exercises and stretches that might be of benefit. I only work with PTs that have worked with ALS or KD patients. It is one of the first questions I ask when I visit with a PT prior to beginning any program. My PT gave me a set of exercises eight years ago that I still perform today. I have modified the exercises a couple of times due to the progressive nature of KD, but they are still beneficial.

    I found the quads need to be a focal point for stairs, standing up and walking. The hip and lower back muscles are also important. Since KD symptoms and severity varies with most of us living with KD, a PT can perform an assessment based upon your current capabilities and needs. They are the most qualified to provide support for continued quality of life.

    I wish you well and thanks for reading my blog.

  3. Bruce, I choose my attitude too, and in this case, mine is the right one.

    How about posting the names of your eight exercises, so we can learn from you and discuss the exercises our doctor or PT?

  4. Dan, It must be nice to be right all the time. :-)

    As was mentioned above, the PT will design exercises for your unique capabilities and needs. Everyone is a little different and progresses differently. The key to any program is to benefit by the exercises and do no harm. The Smart Exercise Guide is on the KDA website. It is the result of my work with a PT to develop some core exercises. You can find the guide here:

    I wish you well.

  5. I now live in a disable adapted bungalow,thanks to my doctor and housing association,so no more stairs.Walking up hill is also difficult.My neuroligist recommended a physio for me,but,unfortunately the exercises she gave me caused horrendous cramp in my legs.It didn't do my hips and back any good either as I have osteo arthritis as well.Oh well at least I tried.


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