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.