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Since 1997 we have had some form of an e-mail support group for HNPP. And we discuss about anything and everything that deals with the disease. Ed More joined the group a few years back. While others may give a short answer quickly, Ed thinks about it for awhile and tends to get more philosophical. I love hearing from Ed. There is always a snippet or two to take away from what he is written.
Previously, someone had written in askign what to do and avoid, "I have not had HNPP for long, maybe 2 years and from the sound of it have not experienced all the severe effects that some of the individuals have."
Your doing alright. However, you write remarkably well for a two year old. lol Sorry but I can't resist the humor. The point is to emphasize that this is a genetic disease and we contract it at the moment of conception. The variability of symptoms is very large and thus the motivation to seek medical advice because of the onset of serious symptoms is equally variable. Current estimates are 1 in 2500 for all types of CMT/HNPP in the US population. The key issue about what not to do seems to boil down to doing what you are capable of in order to maintain as much body tone as possible and not doing anything that over stresses muscles to the point that persistent symptoms develop. As far as the nerves go, they should always be protected from neuro-toxic drugs and chemicals, from pressure and physical damage, and from habits that repetively do these things even in a small or mild manner. There is a great deal to learn yet about CMT/HNPP and much is known already. Communication and medical professional education will probably be our best allies in the near term future until some medical research breakthroughs ossur. EdM from NH (2/03)
Hello the Group,
You all probably have heard about the recent music club fire in RI where close to 100 people perished. Of course, setting off pyrotechnics in an apparently highly flammable decoration area is a dangerous thing to do and a certain lapse of judgement. I have been thinking about it and an aspect of my CMT/HNPP life for some time now. The central subject matter of my life has been aviation and I have done much in that field over the past 60 years. Currently, I am completing a home hanger project on a beautiful 4000' grass runway development which has taken 10 years to bring about and 30 years of dreaming about it. At this point, I've decided not to consider ever flying again or building any of the aircraft I have so long dreamt of. This is totally due to my HNPP and several severe heart situations. But, that is not all. I am severely limited on taking trips by car and totally discouraged about air travel under the current conditions. Every time I leave the house, I consider where I'm going and what transportation will be used.
Why ? Because I am concerned as to how I can get back if I have medical problems and what conditions could arise that would create an emergency situation. Am I strong enough to get out of a bad situation? Can I walk far enough to get help if I'm stuck ? Am I safe operating a vehicle ? How long can I last before requiring rest to recuperate ? Can I endure the operation long enough to complete it ? Do I need help to accomplish this task ? If I do this, am I hurting myself temporarily or permanently ? These are all questions that enter into my decision process of daily activities as well as forward planning for days to years of commitment. In fact, it most often is the controlling factor in everything I attempt to do. Some of us are nearly house bound and some of us can live with very minimal restrictions. Right now, I'm in between these extremes and headed down hill. From all I've learned, there is no expectation of a cure and no realistic band aid to make mine a "normal" life. So why worry about it? Frankly, I and we can not bull our way through life without significant risk of permanent damage. I am by inclination and training an engineer. That is a person who makes something work without pure scientific knowledge and meets some kind of cost and schedule standards.
There has always been some vague areas where I seemed to be not able to navigate and I generally maneuvered around them to reach new goals. Since my diagnosis about 6 years ago, the reasons why the above conditions have developed has become apparent. The heart problems are real, but they generally have well defined fixes with predictable results. This HNPP thing has been a steady deterioration with no recoveries or remissions. I can live with that and I can plan with that. I also, being the engineer, am going to search for and incorporate every bit of information that I can lay my mind on to deal with the HNPP aspect and to optimize my capabilities . For that I thank you good people for your interest and response to the comments posted here.
What it boils down to is that I believe we all must keep a weather eye on what we are doing and what degree of danger that it might possess not only to our HNPP symptoms, but to our safety as well. Being in a situation where you can't move fast enough, go far enough, or be strong enough to extricate yourself is definitely a life shortening potential. Maybe it takes a terrible nightclub fire to make us realize that we need to do some extra thinking about our "going ins and coming outs" in order to survive with the "normal expectations". The pensive and philosophical EdM from NH --- (2/03)
Hello the group,
Stress is recognized as a factor in many diseases from common colds to heart and stroke events. Trauma is also recognized as a significant factor in the progress of HNPP/CMT. In my personal experience, stress has been one of the things I must deal with in order to maintain the best possible lifestyle in view of the HNPP limitations. Long before being diagnosed with HNPP, I was dealing with the effects of stress both medically and in lifestyle choices. I have taken stress reduction professional training with good effect and it is still one of those things to keep up with in this life even though I'm older now and retired.
Stress comes from many sources but the effects to the body are similar. You get tired and more susceptible to infections. Physical weakness is promoted and most of the bodies systems take a beating. It behooves us, especially with HNPP/CMT, to find ways to alleviate stress and its effects on our bodies if not our minds as well. Actually, both considerations are intertwined and steps taken to relieve one helps the other.
So, that which builds stress is bad and that which alleviates it can only be good. This is a pretty good tenet and I feel no need to verify it. Maybe the thing to focus on is as simple as that tenet. If we can help each other to alleviate stress, that is good. If we build stress then we should back off and try to turn it around to help reduce stress for ourselves and our correspondents here. These times are certainly stressful for all of us no matter what the persuasion of our politics. We can try to put that aside and put the care of our neighbors here to the fore. I too have experienced the effects of war stress, especially by marriage to a European refugee who lived through some of the worst that WW II had to offer. I feel the need to address the effects of stress from the war sector and believe that I should divorce my politics from that consideration. I would hope that we all can do so without having to make the whole subject taboo. To surface stress is to reduce it and to subvert it or to tell people to just ignore it is to make it much worse. So, I'm willing to talk on it as it is all part of the process of dealing with HNPP - IMHO. EdM from NH (4/03)