Monday, August 1, 2016

Thinking About my Life and MS - Era 6 - 2012 to ----

The previous episode of this series did not actually mention MS other than the diagnosis.  In reality the disease progressed through the entire period as can be read elsewhere on this blog.  By the end of that "era" I was walking with a noticeable limp and starting to use a cane.   Unfortunately the this era, from the point where we moved to the UK, is all about the disease and its progression.

We moved over in August of 2012 and rented a nice flat on the Thames in the town of Maidenhead.  My wife knew the area that she wanted to live in and Maidenhead was a good place to start a home search.  As I start to write this entry it has occurred to me that I really did not talk about what I did with myself when I left Black & Decker post their acquisition.  While still in Baltimore I did look for a job for a while before deciding to just retire.  Early retirement had always been the plan, this made it happen a bit earlier than planned but that was ok as well.  I decided to try and retool my self back to the dawn of my career and developed a couple of websites.  One for photography and one that was a development tool.  I think they were both good ideas but the idea of selling and marketing things bores me.

When we moved to the UK I got interested in micro electronics and started developing software for the Arduino and for the Raspberry Pi.   My test platform was a robot that trundled around the floor of the apartment controlled by a Raspberry Pi integrated with an Arduino.   This led to a volunteer gig with the NHS to develop an instrument, based on the same technologies, to measure the recovery of heart disease patients.  This led to 3D Printing and all of the above can be found in another blog here!

After a little more than a year we did find a new home and after successfully navigating Englands home buying process we were able to take possession, redecorate the place from top to bottom, and move in.   The place did not have the spectacular view we had in Baltimore but it is on the Thames, has a beautiful garden, is large enough for our furniture (American), and most importantly has a man cave for me and my toys.

It is now going on five years that we have been here in England and things have been good though degrading on my health front.   Each year it is harder to do the things that I would like to be able to do.   When we first moved over we were able to explore the area restaurant scene, and we were able to travel to France a couple of times, as well as to Ireland, and to take a cruise down the west coast of Europe.  All of these trips, however, were constrained by the logistics of my disability and not what I had hoped for in all the years that I had thought about, and looked forward to, living in the UK.

We also lost my wife's father to cancer in the past year.  He had been fighting prostate cancer as long as I had known him but during that time it was in remission and he was able to lead a very good and active life.   I remember talking to him about our respective diseases on one of their first trips to see us in the States.   I told him, as I have told others, that I would rather have cancer than MS.  With cancer there is a chance that it is not going to kill you and even if it does in most cases you can lead a full life until close to the end.   With MS the progression of the disease is a constant drain from the quality of your life and the ability to enjoy that life.   We were both committed to making the most of the rest of our lives but I think that he was able to do a better job than I given the nature of our diseases.   His last year or so was painful and, of course, stressful for his family.  When the end did come it was a relief.  He did have a pretty darn good last ten years (before falling ill for that last stretch) as he and his wife were able to take four of five "trips of a life time"!

During this time my mother developed the first signs of dementia and the disease has progressed fairly rapidly.  She still remembers me but did forget who her husband was.  Ironic.  This may have been a good thing though as it did make his passing much less painful.

The rest of my story is all about the disease progression and is talked about in detail through the rest of this blog.  I came to the UK using a cane occasionally and am now using two crutches constantly and contemplating the transition to a wheel chair.    Weakness of my upper limbs has now become very noticeable and my hands are impacted as well.  I have failed to respond to some last ditch treatments and am not sure that I will make it long enough to take advantage of some new therapies on the horizon.  In the meantime these "Eras of Will" are part of the documentation package that I need to apply to Dignitas.

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