I moved just a year ago, for a lot of reasons, but, we downsized, moved to a location closer to family, near and extended, moved back to the small town where our kids were born and spent their childhoods for the most part, closer to my regional medical center.

Our new home is one third the size of our old home! Unfortunately it has steps which will have to be navigated, but, it is a trilevel, so they are not huge steps, but a pain in the butt....never the less, it has acreage, which for us was a quality of life issue. We had to shed a great deal of our belongings...fortunately most of it by the time we tossed it was junk, well loved and well used junk....some of it was harder to part with, and some of it is parked in a storage unit....but, we had to sort thru our lives...it is done. There are still some drawers and things, that I need to address, but in general, we are travelling pretty light, and a goodly amount of what fills my bins are memory items belonging to grown kids who as of yet, do not have kids to whom they want to show these things to...they will someday.

I have lost the desire to acquire.

Tony, I am so frustrated that you have had the experiences you have had. Not all of mine were good, and I know I had AN, PN for a decade prior to diagnosis and I know some of their treatment for my 'issues' were toxic to folks with hereditary PNs.

Back then it was 'in my head.' Had I not had an astute cardiologist, it would still be in my head. I hear what you are saying...you have had to manage ALL of your own care, and honestly, I think that is the way health care is becoming. I too, have done most of my own research and tactfully spoon fed it to docs....hoping they came to the right conclusion....only recently, have my docs come up with a few new insights I did not have, and these are ones that are 'interventional needs'....that said, several are all too willing to say, "This is how it is, see you in 6 months, you look great!"

I have had some luck with the docs providing adaptive devices...and I encourage you to look at some of the orthotics that cover the entire leg, some bracing options allow some PNers, especially those with CMT type problems to remain ambulatory.

The worst part is not having a definitive cause! I can accept a disease being untreatable, however, I am still digging for the cause...that seems somehow significant to me. It is hard to accept the consequences of a bad disease if that disease is really still a symptom with no explanation. I know that despite thousands spent on genetic testing, the gene loci may not be known, and then it is still a 'guess', as to whether it is genetic...we can only say, hmm....serveral of your family members have some similar problems.

And, it is important to stave off any additional bad effects of AN, which can not be done without pain medication. My days and nights bear a resemblance to yours, and I think they can be better with pain meds.

I have a high cholesterol, but, I am a genetic freak with a 'superior' VO2max. It means if my pain is controlled, technically, my heart can handle a huge load of exercise (despite a plethora of arrhythmias)....provided the neuro system keeps firing properly to prevent one of those garden variety arrhythmias from becoming an 'issue', and the distal parts of me like hands and legs below the knees manage to feel where they are in space, and move when I will them to and like you provided the pain doesn't down me totally after an hour or two. I have seen cases where having a strong heart, is a bad thing.

You do not even sound angry to me Tony...you sound calm, courageous and reasonable and not depressed nor depressing. Life with this disease is a daily challenge, but you're meeting it, and expressing that is it difficult, is in no way negative.

Keep looking in that mirror! What is looking back at you, is a hero.