Thursday, December 15, 2016

Current Status

My current status is pretty much summed up by the medical report that precedes this post.  Not so good.  Have just had a pretty bad relapse that has taken me that much closer to being in a wheel chair. This on the heels of a fairly heavy programme of supplements and diet management.  So much for that hope!

Current Medical Report

What follows is NOT an actual medical report but rather a construction that I was hoping my doctor would use for such a letter. There seems to be some reluctance to help me with this process...which I can understand if that is truly the case. Right up to the point where it occurs to me that it is my damn life!

Our mutual patient, Mr. Kostelecky, has requested that I provide you and he with a medical report in regards to his Multiple Sclerosis that contains substantial information about its diagnosis, history/development of the disease, treatments to date, current level of suffering, and finally a prognosis.


According to medical transcripts Mr.Kostelecky was first diagnosed with Relapsing Remitting Multiple Sclerosis in 2000 by a Dr. Genut in the United States.  When I first saw him in May of 2012 he was relatively stable with some secondary progression and an EDSS of 5.5 to 6.  He is currently continuing a somewhat more rapid secondary progression and now has an EDSS of 6.5 approaching 7.

History and Development of the Disease

According to transcripts from Dr. Genut our patient first developed symptoms consistent with Optic Neuritis in 1995.  In 2000 he was formally diagnosed with Multiple Sclerosis and in 2002 he suffered his first muscular relapse with a significant weakening of his right ankle.

By 2011, when he moved to the United Kingdom he had advanced to an EDSS of 4.5 to 5 using a cane to walk shorter distance and a powered scooter for longer.  As stated above when I first saw Mr. Kostelecky in May of 2012 he had suffered ongoing secondary progression and was at an EDSS of 5.5 to 6.

I saw Mr. Kostelecky on the 04/12/2016 he had further advanced to an EDSS of 6.5 approaching 7.  He constantly requires crutches for any walking and has episodes when he struggles even with crutches.  He fatigues easily and suffers constant urinary incontinence.  Balance is severely compromised and vision in his right eye is increasingly impacted as well with some periods of disturbed vision lasting hours.  He has indicated that transition from bed in the morning is also becoming increasingly difficult.  Most worrying to Mr. Kostelecky is the development of significant weakness of his arms and hands with the right being worse than the left.

Treatments to Date

When first diagnosed Mr. Kostelecky was treated with Avonex and then moved to Copaxone for ease of self injection.  He was briefly off the Copaxone and moved to Fingolimod in 2011 but felt worse on taking it and moved back to Copaxone.

On moving to the UK he stopped the Copaxone in order to participate in the Ascend Trial for Tysabri.  He developed some side effects, without apparent benefits and withdrew from the trial after a little more than a year.

In early 2015 Mr. Kostelecky had five infusions of Alemtuzumab in an attempt to slow the immune systems attacks on his mylen.  There was some skin reaction, which is not unusual.  His admission for treatment was prolonged, however, due to some blood abnormalities which were worrying but stabilized and allowed treatment to resume.  Routine blood and urine analysis continues for tracking purposes.

Mr. Kostelecky does not feel that the Alemtuzumab had any positive effect.  In fact he feels that he left the treatment with more of a disability than when he entered given that he moved from being able to use a single cane some of the time to needing crutches at all times.  He has declined a second course of Alemtuzumab for this reason.
Mr. Kostelecky has also had a number of steroid infusions over the past years in an attempt to stabilize him after a relapse.  He is unsure of the net benefit of these infusions, one of which was administered the first week of December in 2016.  He will typically feel much better right after the infusion but will then degrade back to at or near where he was prior to the steroid being administered.

Early next year Mr. Kostelecky will be treated using an off-label drug Clabridine on a compassionate basis by The Royal London Hospital.  This drug acts in a similar manner to Alemtuzumab but is better tolerated.  It will be administered as three injections over three days and then, like Alemtuzumab, will be followed up in 12 months with a second treatment.

Current Level of Suffering

Mr. Kostelecky recognizes that he is lucky not to be experiencing any significant level of physical pain at this stage of his disease progression.  He does suffer from severe cramping and muscle spasms and is extremely stiff in the morning and whenever moving after having been still for a period of time.


There is no certain prognosis for Mr. Kostelecky as we hope that either treatment by Cladribine is of help or, somewhat more wishfully, that the disease burns itself out on its own accord.  Though the latter is rare it is a possibility.

Mr. Kostelecky’s understandable concern revolves around the disease progression continuing.  If it does at the same pace as he has recently been experiencing he will be moving towards a point in time where he is left unable to care for himself nor to do any of the things that lend his life quality.  This would be around an EDSS score of 8 to 8.5 which could be reached within one to three years.  

Monday, August 22, 2016

Scientific Method be Gone Here

Am taking a more rigorous, and enthusiastic, approach to diet give that it is one of the few avenues open to me.  Have retained the services of a nutritionist and have made some changes based on her least one pice of which most of our mothers would have advised.  The latter being "Eat Your Vegetables!".  In support of this latter decree we have gotten a nutribullet to augment my normal meals with a veggie smoothie every day.

The nutritionist has also started me on a regime of supplements (including mushroom therapy) designed to fight inflammation and we have done a food intolerance test.  The food intolerance test came back with three foods that caused a distinct reaction (cow's milk, yeast, goats milk)  and three that caused a moderate reaction (gluten, egg yolks, zinfandel grapes).

We have not met yet to discuss the results of the food intolerance test but I have cut all dairy products from my diet.  Goats milk was not an issue!  Yeast is a whole 'nuther matter as it is in everything.   Will have to talk about this one.   Our goal is to try to adhere to a diet that completely avoids some or all of the intolerance items for some amount of time in which results should be noticeable.

Here it becomes obvious that scientific method has gone out the window.   We have a change of diet to include more vegetables, two streams of supplements, and avoidance of multiple food groups.   Oh well.

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.

Thursday, July 28, 2016

Thinking About my Life and MS - Era 5 - 2000 to 2012

This era started with my diagnosis with MS but ended with it having been the best times of my life.  I guess that you could say that MS was both the worst and best thing that happened to me through my life.

I was a bit depressed on having been diagnosed with an incurable disease that would rob me of the ability to control my body over the coming years.  Things were not great at home, had been stressful at work (though not improving) and now this.  So I sought some help from a therapist.   I went to sessions with him for about a year, spent about the same amount of time on some mild anti- depressants, and came to some decisions.  Well, really one big decision and that was that I needed to really start living the life that I had to the maximum.  One life.  We each only have one life but when you are healthy it is easier to think about the things that you can do later than if you know that you only have limited time.  So one life it was.   I was even going to have that tattooed on my back in a chinese script but was afraid that I would end up with a 'tat that said "kick me" instead of "one life".

The big decision that came out of my new direction was to leave the marriage that I had been in for twelve years.   It was hard but neither of us was happy and I did not see us getting there.  This is where the boat that I mentioned earlier came in handy.  I had always kinda wanted to be a live aboard and this became my chance to do so.  A 32 foot sailboat is not a large boat to live on but I was able to adapt it so that it was pretty comfortable.   It helped that I was traveling a lot.  It also helped that a lot of crap did end up in a storage locker.  It is important to note that there are two extremes of live aboards...those that want to be ready to sale at any time and those that might sale once or twice a year.   I was in the former...if I wanted to go for an evening sail on coming home for work the boat needed to be ready.

During this time I had also taken up rock climbing and was doing a lot of that.  I was, as mentioned above, traveling a lot and was able to taking advantage of trips to stay extra time to explore places.   The biggest initial change in my life, though, was the community that I became part of as a live aboard.  I had met and was friendly with folks in the marina but when you live on a boat next to them your bond becomes much closer!  We had a lot of fun together sharing meals, doing evening and weekend sails, going out into Annapolis and causing trouble.  Great memories.

It was also during this time that I was promoted to Vice President at Black & Decker as part of an IT organization that did some pretty good work, if I do say so myself.  My boss, our CIO, was able to build a team that worked well together and was able to do so over a pretty long time relative to most IT organizations.  We had some ups and downs, we being any two of us in the organization, but over the years we built a record of implementing the things we said that we would implement, doing it on time, and within a budget.  All of this while also responding the the business's need to take operating costs out where ever possible.   It was at the end of this period when my boss and mentor retired and I was able to move into his office.  The next three years of my professional life were to be interesting.  It was 2008 and the economy went south.  Then, as a direct result of that shift, Black & Decker got bought by Stanley Works.  So I got to lead an organization through a financial down turn, which I had done pretty well (if I do say so myself), and now I was on the hook to help it get through an acquisition by a company that had markedly poorer systems and an egotistical IT leader.  I was able to positively influence the absorption of my organization into the new company without significantly damage to our capabilities but I was left without a job.  I had planned on retiring early...this just made it a little earlier than I had planned but all was well.

Oh, just about forgot, I also met, fell in love with, and married, someone during this time!  No, I did not really forget.  I was just saving the best for last!  I was living on my boat, I was in the UK a lot, and I fell for someone that worked in the London office.   We started dating, our first trip was together was to Spain where I lost a bet that we would be able to find a Thanksgiving Turkey Dinner in Madrid (ironically, the day after Thanksgiving we found an Irish Pub that did have that dinner on offer but it was too late for my bet).  It was the first of a number of great trips that we would take together.  She ended up moving to the States (though it had nothing to do with me) and we bought a beautiful place together on the Baltimore Harbor.   I had bought a new, and larger, sailboat to live on in 2003 and we took a number of memorable trips on her.   One was during cicada season and to these stupid bugs our boat must have looked like an island as they constantly dive bombed us as we motored down a river to a planned anchorage.   I had gone below and noticed the boat was weaving about madly.  I went to see what was going on and it seems that Sara was fighting off bugs and not paying a lot of attention to the helm!  We got married in November of 2006 at a ceremony in England.  I had asked her on a holiday in Vail Colorado the previous April though at the time I did not realize what day it was.   We had eaten dinner on the top of a mountain and on the ride down, with the lights of Vail shining below the gondola, I had intended to ask her but chickened out.  I finally got up the nerve once we were back in the hotel but it was after midnight at that point.   And it was April 1st.  April Fools Day.   Hmmm.

These were the best years of my life.  I guess you could say that MS has been both the worst and best thing that has ever happened to me.

Thursday, July 21, 2016

Sins of the Fathers

I am nearly sixty years old and much, much closer to the end of my life than to when my father, the adoptive one (now referred to as JRK), was a factor in my day to day life, yet he haunts me still.  From the grave now as he passed away this week.

His funeral will be a small one as he had few, if any, friends and was not part of any social circles.  I won't be there due to my ever increasing disability.  If my mother remembered her husband I might feel the need to try and make the trip but it would be brutal ... especially given the time of year and the weather in the US right now.  Luckily for my Mom (and I) her dementia seems to have wiped the memory of JRK from her mind.  I think this is saying something...and that he was the first long term memory to go, and to go pretty much completely, says it all.

Sadly my only regret in his passing has been that it was not soon enough that my mother to have enjoyed the last years of her life.   She was held back in many ways by the "guy who sat at the end of the table" as she now refers to him when a glimmer of memory surfaces.  Held back from doing things, held back from traveling, held back from having a loving relationship.  It is water under the bridge at this point and it was her decision to stay with him through all the years of abuse and rancor.  I never understood this and now never will as her mind is now in the day to day...and at least this week that is not a bad thing.

My mother in law called to talk to me about his passing.  It was a little awkward as she knows the kind of relationship that I had with him.  Particularly awkward given the recent passing of her husband who was a truly good father and good man in general.  His funeral service suffered from the opposite of scarce friends as it was standing room only.  I cried at his passing and I still think of him often.  Yet when Sally asked me about JRK, that surely he had some good points, I struggled to come up with them off the top of my head.

Ironically, when I got the funeral announcement that my brother and sister-in-law put together it did make me sad.  He was human and was a huge part of my life whether good or bad.  He was also the father to my brother and sister and a companion to my mother for fifty years.  He could be charming, even entertaining, and he was always there with a story though as he got older the stories seemed to get repeated more and more often.  I think my best memory of him might be the story about the sandwich with the onions on it.  This will only make sense to my family and any one that knows my brother and how much he likes onions.  He was passionate about woodworking, he loved his dog(s), and he was as staunch a republican as the party of the elephants could hope to have.  He was equally passionate about FOX News and of course he could never have too many sports channels.

I still struggle, however, to remember him in the context of good memories from the ten years between when he adopted me and I emancipated myself from him.  I know there must have been some but they are just not coming to me.  The bottom line is that this does not matter.  His influence on me was large for better or for worse and it may well have been for the better in the long run.  It was my desire to emancipate myself from him that helped motivate me to get my first job with computers.  I guess you might be able to say that I owe my career and its success to him?

In closing I will acknowledge that it might seem a bit immature of me to so adamantly refuse to address him as "Dad".   He was my adoptive father and I addressed him as a father for many years.   Somewhere in the more recent past I decided that he had not earned this right from me simply by virtue of signing some papers.  I think that he did this just to make my mom happy as I also think that she married him for me...because the mores of the time insisted that a boy growing up needed a father.  Maybe I should feel guilty about this.

In any case, my refusal to call him Dad does seem a bit immature but what the hell.  I earned it.  It does not change the fact that I have a brother and a sister from the relationship or diminish their brother-ness or sister-ness.   The are close enough to me that the stress of their relationship is my stress.  The last legacy of JRK that I will mention is the impact that he had on his natural born children.  He scarred them and it has manifested itself in behaviors from the two of them that prevent them from being able to get along as brother and sister.  The reasons go deep and the scar tissue goes back decades but I hope that they can get past it.  I think they both could use talking to someone that can help them repair the legacy that JRK has left them.  It would be a shame if they could not.

Saturday, July 9, 2016

Sometimes it is Hard not to be Depressed

Depression, obviously, goes hand in glove with MS and probably any terminal (or not terminal in the case of MS) disease.  I think that I do a pretty good job of keeping it at bay by keeping busy and by keeping in denial.   Sometimes the latter is hard to maintain.  

The other day some of out neighbors rode by on their bicycles headed for the pub in the village next door.  It caught me at a bad moment and I just about broke down.  There are so many things that I can not do and sometimes it makes me angry to see people doing them.  This time it just made me sad.  

Life is not fair some times.  I try to make the best of what I have left and know that it is going to continue to get harder and harder.   At some point, it is going to be too hard and the quality of life too low to put up with.  Hence the pile of paper work on the floor of my office.   Medical records that are part of the submission to Dignitas that will allow me to choose the time when my disease takes me.  I would rather do this without traveling to Switzerland but the politicians in the UK are as bone headed on this issue as those in the US. 

I will continue to hope for the best but the realist in me sees a path with few options and an inevitable conclusion.  But a far better conclusion than being bedridden for years with zero quality of life.

Thursday, June 9, 2016

Is it the Weather, Stupid?

The weather, in terms of heat and humidity, play havoc with my nervous system.  This is ironic given the years that I spent on boats...unimaginable now.  Interestingly this does not seem to be the case with all MS sufferers as I have met someone who positively loves the heat of the sun and feels no impact from it...rare though.

In my case heat from any source is bad and there also seems to be a humidity link and a link to a change in the weather...but I say seemingly because nothing is ever 100% correlated.    Two days ago I had an almost complete meltdown.  Not quite paralyzed but close.  Luckily it only lasted the day and I felt better yesterday and even better today.   Interestingly it was pretty hot two days ago (for England), it was humid, and a front was set to move through.

Well the front has moved through, the temperature has dropped, as has the humidity, and I feel pretty good.  Now remember, when I say pretty good, I mean relatively speaking.  If it were ten years ago and I woke up feeling like I did this morning I would have called an ambulance.  But it is all relative.

Sunday, June 5, 2016

Last Ditch Counter Attack from the Trenches

Appropriate title given that 100 years ago trench warfare was being waged on an unprecedented scale across Europe?  I have largely run out of sanctioned medical treatments for my disease with the failure of the talemtuzumab infusions last year.   Yes, I am working on one more but have little confidence that it will do any better as it is pretty much based on the same principal.

Doesn't leave me with a lot of options beyond what Dr. Google can come up with?   In truth there are some diet options that are worth an experiment.  Ironically, one of them works in a manner similar to Alemtuzumab.  Starving the body seems to cause the immune system to behave.

The above is a little drastic but there is no doubt in my mind that food has an impact on my symptoms if not my disease progression.  We have cut out a lot of saturated fats as they are a culprit but this week I am going to go Vegan for five days.  Next month I may try the above diet for another five days.

Not terribly optimistic but at this point anything is worth a try.

Tuesday, May 10, 2016

Thinking About my Life and MS - Era 4 - 1985 to 2000

This was the era of my first marriage.   It was not a terrible era nor was it a great era.  It just was.  There were some good times but there was also a lot of bickering unhappiness.  Both of our families were messed up and though mine was the more obvious hers was as bad but in a more insidious manner.

I had left the small consulting firm to go to work for Booz Allen prior to getting married and worked there for two years.  It was a formative experience.  Taught me a lot about PowerPoint, politics, and polishing prose for paying or prospective clients.   After a couple years there I moved on to a small consulting group in Baltimore.  We bought a house in Columbia smack dab between Baltimore and Washington DC.

I bought a small boat and then later a C&C 32 that we kept in Annapolis at Annapolis Landing Marina.  This will become important later!

I got a job with Black & Decker as a Director of Application Development working for a guy that I had doubts about during the interview process but joined his team anyway.  Turns out that we just could not communicate.  I thought it was me for a while.  Then other people joined the organization and it turns out the guy was pretty much bonkers.  Felt a little slow in that it took me so long to come to that conclusion.  In any case I was on the road to being fired when some reorganizations happened under the power of a new leader for Information Technology, Logistics, Distribution, and Transportation.

This was the beginning of some interesting times as I moved into a role serving as Director of Technology reporting to the VP of Technology and Operations whot reported to the leader that I mention above.   This is harder to write than it should be given that I am leaving out names so I am going to cut right to the chase...I survived a number of trying professional ordeals and saw a lot of changes in the management team at all levels ultimately including the top guy.  He left to teach at a very prestigious University in the Washington Metro Area.   For some reason he is not teaching anything to do with Information Technology, Logistics, Distribution, and Transportation (luckily for the students).

At home things were ok but certainly not great.  My wife at the time and I did not have knock down drag out fights but we did spend an inordinate amount of time spitting nails at each other.   We both had family issues and we both found spending time with our respective families to be difficult.   Without going into the gory details I would summarize by saying that we simply did not make each other happy and in fact we seemed to do just the opposite.

Thursday, April 28, 2016

Another "Threshold" Reached

There have been a variety of thresholds that I have reached as my disease has progressed.  They have included the very first symptoms, the first times when the disease started to impact my normal life, when I started to show an external symptom (limping), when I started to use a cane, and so on.  It these were positive events I could call them milestones but I associate more positive things with a milestone where as the first thing that comes to mind with threshold is "threshold of pain".

In any case the latest is the installation of a chair lift.  It was really hard to mess up the house with it but it had to be done as I was finding it increasingly difficult to get up and down the stairs.  Sara was also find it difficult to ignore my progress up and down as she was constantly on edge waiting for a big thump.  Any way, it is done and it really does make a big difference.

Monday, April 25, 2016

Good to Know that MS is NOT a Terminal Disease!

Well, not really that good to know.  I have known this for a long time but have not really thought about it that much.  It's harder not to think about it now that I am moving along in the disease progression.

So MS is considered to be a "chronic condition" rather than a terminal disease.  Chronically robbing its victims of all nerve functions other than autonomic functions that keep the heart beating and the lungs operating.  What the hell is the sense of that?  The human body is remarkably resilient in terms of design.

In practical terms this means that if I lived in the States, and was lucky enough to live in one of those States where the right to die is recognized, I still would not have the right to die!  By the time a doctor would agree that I was six months from death I would have lost the ability to operate the all important kill switch.

Time for a little rant.  I find it interesting that the conservatives in the US are so very keen to deny me the right to choose the time of my ending, and are rabid about abortion, but are actively supportive of gun ownership (with the tens of thousands of deaths that entails) and would be the first in line to vote for war.  The sanctity of life is subject to definition and interpretation I guess.

Not that England is any better.  The sad truth is that I am denied the right to die not to protect me from ending my life but to keep the kids from talking Grandma and Grandpa into making the trip.  Why not write laws that protect them directly rather than through my rights?

Friday, April 15, 2016

Best EVER Charing Cross Visit - and a Non NHS Rant

Left for the hospital early so we could have time to pick my wife who was returning to LHR from a trip to the US.   Made it through the rush in about an hour which was pretty decent but then came the lucky break...actually got one of the vanishingly few disabled parking spots!   First time in over two years of trips.

Got to the PIU (Programmed Investigations Ward) a little after 9am and was on the drip in record time.  Had explained that we were trying to catch a plane and I think that my diligence in wanting to pick up my wife can not have hurt the fast turn around when the drip was finished.   That or my friend and driver Jimmy aka Zamir standing in the hallway!

Got on the road and then got the message that Sara had landed.  Thought we had a few more minutes than we actually did because we did not expect her to clear the airport in what turned out to be record time!   She only had a few minutes to wait before Zamir's "friend" that she thought was collecting her showed up...she was a bit surprised to see us.  We were home by 11.  Great day at the hospital.

The previous day, however, was absolute hell!   Got there at 11:15 was not out until 4pm and all for a 60 minute infusion.  The lab was backed up presumably because they had a total systems failure on the Tuesday.  Anecdotally I understood this was not a rare occaision.  Unforgivable that systems that important be allowed to fail if they do so more than very, very, very occasionally.

The staff did what they could but the lab problem was amplified by there only being one doctor on the ward.  A young guy that had not had his lunch by the time he saw me just before 4pm.  Finally got connected, got infused, and got on the road missing the worst of the rush.

I know that the NHS is a stressed organization and I do think they need better funding.  I also think that a fair amount of that funding should go to systems and process improvements leading to reductions in operating costs that ultimately, and in some cases very quickly, will pay back the investment.  My observations of their operations over the past years would lead me to believe that there are billions to be saved.  Billions will need to be invested with a lot going to gain those savings but help is needed in their systems and the processes around them.  I could go on for a while from what I have observed.

But I wont in favor of a rant.  Before I was severely disabled I may have thought this...but now I feel that I can say it.   Obesity should not be enough to justify a disabled parking pass.   The woman in the space next to me was simply fat.  Ok, I do not know her full story.  She could also have been an MS sufferer or fighting cancer or worse.  I strong probability is that she was just too heavy for her body.   Maybe in for a knee replacement that would not have been needed if she had been walking from a regular parking space for the past years (along with eating less and exercising more).  Ok, I know that I am probably being unfair in this particular case but my point about obesity not being a condition of eligibility for disabled statement stands.   Eat less and exercise, get surgery if you have gone for a year of honest dieting and exercise and it has not worked (as recent studies say that it takes a year to reset your body).  I would give anything to be able to walk.  I would gladly take and fight obesity to be able to do so but I can not.   Just saying.

Thursday, April 14, 2016

Another Steroids Infusion

So...a health update.  Hard to stay in denial when you are sitting in a hospital hooked up to an IV.  Not sure the infusion will actually do any good but have to try.  The idea behind the steroids are that after or during a relapse they help get things back on track.

I am very much off the tracks so getting back on them would be a good thing.  Have lost function in left leg which had been my good one.  Worse have now lost some function in hands and arms...with my right side being worse than the left.  Vision a little worse but only a little.  Hands and arms very worrying as they really come in handy.

Am not sure the infusion will actually help as past performance is not indicative.

Am now signed up for an off label treatment that is supposed to help slow the progression of MS by weakening the immune system but not destroying it like the Lemtrada treatment last year when I started this blog.

We are running out of options...hopefully in the short term the steroids will show some benefit and that longer term the off label stuff will as well.  Or that the disease burns itself out while there is still some quality left in my life.  The question of course being how much quality does a life need to make it worth living.  I am not a Stephen Hawking.  No great books explaining my theories coming!

Wednesday, April 6, 2016

Thinking About my Life and MS - Era 3 - 1975 to 1985

The third era of Will - Making up for lost time

Getting away from home to go to college was a huge release.  The first change that I made was to ditch the whole getting up on Sunday to go to Mass thing.   The last day that I went to a Sunday service, other than once or twice with my Mom, was the last day that I went with her before heading to school.  It pains my Mom greatly but I have never really put much stake in there being a God in the organized religion sense.  What kind of god, regardless of religion, would condone the number of people killed in their name over the past centuries, not to mention all the other evils that exists in our world?  Yeah, I know, that whole free choice thing.    Anyway, I digress.

My first year at college was all about partying.  Not so much that I was ever in danger of flunking out but I did cut loose.  A lot of booze and for the first time ever some pot.   And then more pot.  And some more booze.    The whole rushing thing never interested me other than as one more opportunity to get some booze.   Funny thinking back on it now as the drinking age was 18.  I am sure that some things will have changed but my bet is that kids can still find booze.  Not to mention drugs if they so desire.  Anyway, I digress.

The second year at school I got a life changing job as a student intern working in the Computer Services department at school.  Did not know that it was going to be life changing but it would be.  I had taken a couple of programming classes my frosh year and loved them.  Got a job working with Cobol paying 2.08 per hour!  This was not much but it did help pay for the pot and booze.  Now this may be an anomaly but there were a lot of people smoking dope at ODU.  I lived in a residence hall with 40 guys and all but one we knew smoked dope.  I do not know this for a fact but think that the stats were pretty similar on other floors and wings.   So, if your local politician went to ODU in the late 70's and claims not to have smoked dope...I would bet they are lying.  Just like the guy that didn't inhale.  Anyway, I digress.

So the life changing event was getting the intern job but the pivot point was when an opportunity came to apply for a full time position at the end of my sophomore year.  I jumped at the chance and was full time for that summer.   I did not go home.   In fact my trips home pretty much dried up as I had really had enough of my adoptive father to last a life time.  Maybe he is right and should get the credit for my success.  I suspect I would have followed the same course but having a compelling reason to want to be independent helped!

So through the rest of this era I thrived at work, partied hard at home, and sometimes at work.  I effectively burnt the candle at both ends and in the middle.   At one point I was working at the University full time, taking two classes, and doing some part time consulting work.   I was rolling in money and still found time to spend it.  Had a new car, a boat, and given that I lived on campus, a pretty darn good life style.

There are a couple bad memories from this era but the overwhelming majority of them are good ones. Even the part where a girl broke my heart into little pieces for the first time.  While to good memories dwarf the bad ones there was a bad one that provided a salient learning moment.  Hit and run and driving while intoxicated all in one night.  Night in jail.  Selling things to fund lawyers.  Lesson learned that changed my driving habits for the rest of my life.  Luckily I did not hurt anyone.

I left the University having finally graduated seven years after I started my studies and joined a small consulting firm.   We built the company from 19 employees to the hundreds.  I helped open an office in Northern Virginia and met a co-worker that was to become my first wife.

Monday, April 4, 2016


My mother has unfortunately been diagnosed with Dementia and is showing some very obvious signs of the condition.  She is largely lucid just very forgetful.  She has not forgotten me, nor has she forgotten my siblings so I guess that is a good thing.

The irony is that she has forgotten who her husband is.  She recently spent some time with my brother and his wife after a blow up at home with my adoptive father.  She is back home now and my sister has moved in to care for her.  When she got home JRK came to check on her a number of times.  She asked my sister who he was:  "Who is that man that keeps coming in here and why is he so grumpy?".

It is sad but also funny...and you can not help but appreciate the irony in regards to who she seems to have forgotten.

Thursday, March 31, 2016

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.

Friday, March 18, 2016

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.

Thursday, March 17, 2016

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...

Tuesday, February 23, 2016

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!

Tuesday, February 16, 2016

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