Thinking About my Life and MS - Era 2 - 1968 to 1975

The second era of Will - The Hell Years

The title on this section might be a little melodramatic.  On the positive side my adoptive father was not physically violent beyond punching the occasional wall of course.  There are people that have had to deal with a lot worse.  What he was though was angry.  Always angry.  Always shouting.  Always demeaning.  Always belittling.  Always drunk.  Always a combination of all of the above.

From the time that he and my mom were married (and his adoption of me) when I was ten until the time I left home for University I struggle to come up with some good memories.  I just don't have more than a couple... and I mean a couple!  The thing that I remember the most is the shouting.  Day in and out, summer with the windows open, and winter without the neighbors hearing.  Always shouting at someone.  God how I wished him dead.

Thinking About my Life and MS - Era 1 - 1957 to 1968

Thinking About my Life and MS

As one can likely imagine my being diagnosed with MS in 2000 came as a bit of a surprise and not all that pleasant of one.  Interestingly, however, it also marked the end of one era of my life and the beginning of the next which was to be the best.

The first era of Will - The Years of Blissful Ignorance

This was the era of blissful ignorance from birth to age 10.  I lived in North Dakota with my single mother and her parents.  My mother had divorced my birth father shortly after I was born due to circumstances that I have never really asked her about.  Maybe I should be more interested in what happened, and in my birth father, but I never have been and I don't see starting now!

In any case this was a happy time.  Grandma and Grandpa were both rocks.  Grandpa taught me to shoot, took me for long walks in the badlands of ND, and was the father that I did not have (and have not had since).  Grandma was the boss.  She was also a hell of a good baker.   There was also Uncle Stan and Aunt Patty out on the farm with cousins John and Mary.   Many a good time there as well. Once in a while the West Coast Fishers would visit and add Uncle Donnie and Aunt Ruth, and Cousins Rich and Donna, to the mix.  Still more good times.

Still Waiting on Next Treatment Steps

Went into London to see my neuro specialist consultant yesterday but still have no answers re next steps.  Meeting of consultants later this month will feature me as a topic.  The second opinion will be considered at that point though I am not sure what efficacy the off label drug that was suggested will offer...but anything is better than nothing at this point.  Lacking anything else my request is to go back on Copaxone.

Meanwhile my disease continues to progress.  Everything is harder and takes longer.  Getting out of bed, getting up and down stairs, doing what few chores that I am capable of doing.   Even typing has started to become more difficult though not at all times.

Makes one think...

Year Anniversary

Well.  A year ago today I was in the hospital for a five days of treatment with a drug that has resulted in miracles for MS sufferers.  As in genuine get up out of the wheel chair and walk miracles.  Unfortunately there are no, and were no, guarantees and I am not the lucky recipient of one of those miracles.  

In fact, if anything, the treatment and the damage that killing off my immune system did to my body was probably a set back.  It still had to be done but the price was a miserable 10 days in the hospital, some degradation of my condition, and no miracle.

Crap.  So what gives for the past year.  Unfortunately it seems like a continued, if not accelerated, decline as what little myelin I have protecting my nerve is eroded away.  I have a doctors appointment on Thursday to review recommendations from the second opinion but I hold little hope for anything dramatic.

There is a chance the disease will burn itself out.  Can't come too soon.  I can still walk.  Barely and on two crutches, but still, barely.  More after the appointment on Thursday but, as said above, not optimistic.

See, that is why there have been so few updates!

Month 12 - 3D Printing and Coping with MS

This is my first post in a very long time!  You can probably guess that if I had good news I would have been posting more frequently.  I am not sure how other people deal with disease but I try not to dwell on it so anything that I can do to keep my mind occupied is a good thing.  So this post will be about keeping my mind occupied.  In a couple of weeks it will be a year from when I started this blog, I will have also had an appointment with my Neuro to talk about the results of a second opinion and I will do another post then.  Honest.

In any case, here I sit at 5:00am in the morning (better to get up and do something than sit in bed and angst) with two 3D Printers to my left and two 27 inch monitors in front of me.  On my desk there is a modelers cutting matt with a fair number of blotches of paint.  There are five or six 3D Printed tank models in 1:100 scale littering my desk as well.  There is also a WIP diorama at 1:00 scale that will feature one of those tanks.  To my right there is a small table full of model paints and landscape materials.

My Two Ultimaker 2 3D Printers

View of my Desk

Some of my Bling Collection

I have always been interested in model building but have never really spent a lot of time doing something about that interest.  A couple of years ago I got interested in 3D Printing.  This led me to discovering the Flames of War table top gaming world as my printers are on 3D Hubs available in effect for rent and a local gamer used my service to print a tank.   So I am not a player (my disabilities at this point would make that challenging) but I am an active member of the community as a designer and supplier of 3D Printed things that can be used for the landscapes of their gaming tables. 

My Bailey Bridge Design Diorama

This has become a bit of a perfect storm for me and I have been spending a LOT of time on designing and printing various models for the FoW community (who I know largely through Facebook).   I have a storefront on eBay where I am selling this bling with the proceeds largely going to the benefit of the MS Society.  It is not making a huge amount of money which is fine because a) I really don't want to tie up my printers, and b) too much demand would be stressful and that is not what I need for disease management!  If I am lucky in anything it is that I don't have any money worries so can spend what I want on my toys!

My designs have gotten more elaborate as I have developed my skills though I am still a long way from where I would like to be.  I am particularly proud of two of my most recent designs, that of a Bailey Bridge, and a Horse Drawn Field Wagon.  

Work in Progress Diorama

I am not sure if the tech companies still have the position of "Evangelist" but I have decided that this describes me and 3D Printing in relation to Flames of War and modeling in general.  I am really enjoying the design of this stuff and of trying to incorporate my products into my own diorama's.  Lately I have been trying to recruit some modelers to do the same with my products and also with tanks that I print for them from a collection that is available for free on the web.  I have yet to see the fruit of these endeavors but for one but that one is pretty darn cool as you can see from the sample below.  I hope to see some more equally cool work in the near future as I have three or four more folks working on projects where I have provided stuff for free just to see the result. 

Work of Bill Ferguson
 Scenic Doctor

Month 9 - Bad Couple of Weeks

It has been a really bad couple of weeks.  Yesterday was the funeral for my wife's father who passed away having lost his long fight against prostate cancer.  

For much of his fight Garry led a normal and active life.  Such as is often the case with cancer his periods of remission allowed he and Sally to check things off their bucket lists.  A joke between us was the number of "trips of a lifetime" they were going to take after hitting Alaska/Canada, Asia, ANZ, Africa, and finally India.   Not to mention a bunch of trips to see us in the US and to see friends in Europe...etc...etc!

But the end was painful.  In the span of a year Garry went from active to barely able to move, had a couple strokes, and ended up bed ridden.   At that point the hill became an impossibly steep downward slope.   His last words to me were "I don't know what to do.".

To bring this back to MS.  Garry and I had talked about our respective diseases years ago.  I pointed out to him that he needed to do everything possible to take advantage of the time he had in remission.  I would give anything to have that chance but our diseases are different.   I would like to think that our conversations on the topic of our disease might have had a small influence on the plans that Garry made but I suspect he would have lived his life to the fullest in any case.

Would I trade?  Even knowing how bad the ending was?  In a heart beat.  With the caveat being that I would have arranged for an assisted exit to ease those last couple of months.  I am not suggesting that Garry should have done so, I never asked him what his position was on the right to die.  I only know what I would do.

Month 8 - Wasted Day - Diminished Options

So I spend a day in London, with most of that in a tube for scans, only to find out that my body chemistry is, after all, NOT compatible with the tracers used for PET scans.   In other words, the scan was a waste of time.

They had done a blood test to ensure that I was good to go but the verbal result and the written result apparently did not match.   It was, obviously, the written result that corroborates with the scan not working.  Bummer.

I still have not heard from the doctor that I am to see for another opinion as to possible courses forward.   I guess I need to do some more nagging.