Monday, November 2, 2009

Random Thoughts on Living with Kennedy’s Disease

Kennedy's Disease is frightening in many ways because it is a relatively rare (unknown) disorder. I am often asked what a person can do to minimize the symptoms of Kennedy's Disease.  Is there some magic potion or elixir? If I do (or not do) something, will that help? Since there is no treatment or cure, there is nothing a person can do to slow the progression. However, that does not mean that we cannot minimize the impact of the disease on our lives.

Below are just some random thoughts on ways to help us "live with Kennedy's Disease." Some thoughts are condensed from other posts, while others are new.

Find a Qualified Neurologist:   There are not a lot of neurologists who are familiar with Kennedy's Disease.  If your neurologist is not familiar with the disease, the Kennedy's Disease Association can possibly help locate a doctor in your area.  We have on our website a list of doctors that have been recommended to us by our associates.  If this does not help, let us know and we will contact our Scientific Review Board for additional recommendations.

Exercise:  This is important because it stimulates the muscle neurons and fires the muscle cells.  Over-exercising, however, can be as detrimental as no exercise.  The key is to listen to your body.  I invite you to read my blog on exercising.
In the second part, there is a link to my "Smart Exercise Guide."  

If the person with the defective gene is still not experiencing many symptoms and remains mobile, these exercises can be tweaked by adding light weights and increasing the number of reps.  Whether you use my exercise guide, or some other exercises recommended by a qualified physical therapist (someone that knows the disease), is not important.  What is important is the regular use of a non-taxing program.  Another important benefit of having a regular exercise program is that it also improves your general health. 

General Health:  Those of us living with Kennedy's Disease have to always be careful that we do not associate (blame) every unusual symptom or health issue on the disease. If it is not listed in the common symptoms for Kennedy's Disease, make certain you check with your GP and neurologist. Just because we have Kennedy's Disease does not mean we are immune to all other health disorders. It is better to play it safe and discuss anything unusual with your doctor. The key is to have a good open relationship with your neurologist and GP. Sharing general health issues and questions with both doctors will ensure that no medical condition is overlooked or misdiagnosed.

Cramping and Choking:  Early on, severe cramping is a problem.  It is painful and often occurs in the middle of the night.  Your neurologist might be able to prescribe something (i.e., quinine) to help with the cramping, but I found that an occasional ibuprofen worked best for me. 

Frequent choking often occurs as the person ages.  Chewing foods longer, not trying to talk while eating, and not gulping liquids will all help.  I have also found that daily throat exercises have helped minimize choking.

Laryngospasm:  Something a little more frightening the first few times it happens is called Laryngospasm (we fondly refer to as "dry drowning"). It is a spasm in the throat that often occurs without warning in the middle of the night.  A person wakes up gasping for air. The feeling is as if you have phlegm going down the wrong pipe and you are not able to clear it.   It is frightening the first few times, but once you know what is happening and that you are not going to die, the process is a little easier to get through.  The best way to ease the recovery process is to remember that the more you gasp for air, the worse the situation becomes.  Try to relax and breathe slowly.

Frustrations:  I use this term to categorize an emotional issue that takes place as the disease progresses.  It is easy to become down (frustrated, irritated, angry) with your body's inability to perform basic functions.  It is even more frustrating when you are trying to hide your symptoms from your co-workers, family and friends.  I was a person who told "little white lies" to mask my increasing inabilities.  These injuries and white lies further increased my frustration.  Become knowledgeable about the disease, develop a support system (family, friends, the KDA), and be open (without being burdensome) about your current capabilities.

Safety Falls become a way of life as the disease progresses.  Awareness of your surroundings and focusing on what you are doing are important to your general safety.  In an age where multi-tasking is a way of life, awareness and focus are our guardian angels.  Knowing your limitations is something else that is important.  Most of my injuries occurred when I was not paying attention or tried to do something that was not physically possible in my current condition.  Knowing when to begin using a cane, walker, or other mobility device is important.  Read my blog posts on this process.

Quality of Life:  I believe the key to successfully living with Kennedy's Disease is not to let the mental and emotional aspects of the disease become a barrier to living (enjoying) life to the fullest.  My wife and I came to the realization that we had better do whatever we needed to do while I was still capable, so we did not have regrets later on in life. We live a life where we plan for the future, but enjoy today.  I truly believe that if you are sixty or seventy years old and start saying, "I wish I would have," then you let the disease manage you rather than you managed the disease.

As the disease progresses, I would also encourage you to explore other interests and experiences.  For example, I took up bird watching and I love it.  And remember, the world is no longer off limits to the physically challenged. There are plenty of opportunities today to explore, discover, and enjoy life.

1 comment:

  1. "Awareness and focus are our guardian angels." Yes.


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