Friday, October 9, 2015

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.

Tuesday, September 22, 2015

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.

Thursday, September 17, 2015

Month 8 - PET Scan...Long Day with Crazy Ending

I spent the day in Hammersmith getting a PET scan yesterday.  I am getting this with the support of my Neuro's but am doing so as part of a study on the use of PET scans in diagnosing and treating MS.   This is great for me as the study paid for transport into London AND even gave me some money for my trouble (for a test that I wanted done and would have gladly paid for transport)!

It was also nice in that the test was done at a private facility and their version of the traditional hospital gown was fab!

Got to the hospital early for 0900 start.  Blood work, some other tests, into the PET scanner at 1000 for a 90 minute test.  Slept most of it.

Out of the tube for lunch, did a cognitive/memory test that I failed.  My memory for drawing a page full of shapes that I saw for 10 seconds was not good.  MS, age, impending dementia, or just a crappy memory?

Was able to move the MRI scan (part of the study) up in the schedule in hopes of beating some of the traffic out of the city.   Did one more questionnaire, this one with a mental health focus.  This is where things got interesting.

Got into and out of the MRI.  Slept through much of this one as well.  Nothing better to do.  Have had so many that am used to the noise.   Got back to the room I had been assigned, changed back into street clothes, and then started to head for the door.   Was intercepted by the doctor that was running the tests and asked if he could have a few minutes for close-out.  Was escorted to the staff lounge.

Proceeded to wait for thirty minutes with my mood progressing from optimism at beating traffic, to irritation, to anger.  I don't get angry very often but I was getting there.   Sent two nurses looking for the doctor with urgent message that unless it validated the study my ass was getting out of there!  Was told to please wait.

Finally in comes my doctor with another doctor.  My first thought was that this was the lead for the study but he was dressed in jeans which would have surprised me.  Then I noticed that he was holding my mental health questionnaire.   His introduction as a shrink and my realization of the possible interpretation of a couple questions on my coincided!

The questionnaire was all about depression.  My score indicated that I might be a little depressed but not at the level of "clinical depression" where treatment is needed.  In my opinion I would be surprised if anyone with a progressive, incurable, and ultimately fatal disease would not be depressed but I digress.

The question that got the attention, that I should have explained to the doctor but did not in my haste to beat traffic, related to suicide.  I strongly believe that patients with a terminal illness should be able to opt for a doctor assisted suicide.   I was disappointed when the UK rejected this concept recently but am happy that Dignitas, located in Switzerland, provides this service.

I am hoping for the best in terms of treatment for my disease but I am also preparing for the worst.  If you read through the EDSS chart that I posted earlier you can see that at some point it is very likely that my quality of life will have reached a point where it will be time for me to exit stage left.  I have joined Dignitas and will be working through the process to be prepared for this point should it come.

My answer to the question on suicide should have included the above explanation.  In absence of that my checking the box that said I occasionally think of suicide triggered the intervention process that required a screen by the resident psychologist!

This was something out of an episode of Holby City or Casualty.  I am sure that all the staff knew why I was in the "holding pen" and probably would have tackled me if I had tried to escape.  Not that a guy with advanced MS riding a scooter and carrying two crutches was going to be much of a tackle.

I recognize that choice in this matter is one that causes great angst and debate.  Some may believe that there is never a time when one should be able to take a life...even their own.  I respect that belief but do not share it.  Hopefully if someone on the other side of the coin reads this they can respect my position even if they object to it strenuously.

Tuesday, September 15, 2015

Month 8 - Next Steps

Well the letter to my doctors seemed to have helped with one of my two next steps.  Tomorrow I am scheduled for a PET scan to help determine where the disease is attacking my nervous system.   I am not totally sure what this information will help in terms of treatment options but I will hope for the best.

Interestingly the test is part of a clinical trial so expenses for getting in and out of London are paid for by the trial.   The procedure is an all day one given that I have to have both an MRI and the PET scans.  I am not claustrophobic but spending almost three hours in a tube does not sound like fun.


Tuesday, September 1, 2015

Month 8 - Letter to My Doctors


Doctors Scalfari and Nicholas:

I hope that your summers have gone well.   Hard to believe that it is already the end of August already.  Even harder to believe that it has been six months since I was in Charing Cross for the Alemtuzumab treatment that as of my last appointment with Dr. Scalfari seems, unfortunately, to have been ineffective.

It is interesting that my most recent MRI is not showing signs of new lesions as the disease is most certainly progressing, and progressing somewhat rapidly.  All of my existing impairments have continued to worsen, right leg in particular, but also lack of balance, right eye vision disturbances, and fatigue.  Added to this in the past months has been weakness in my left leg, my right arm, and significant tingling and weakness in both hands though my right is worse than my left.  The impairment of my hands is something that was very intermittent but is now constant.  As an example of progression, it is increasingly difficult for me to get up from bed unassisted…or from the couch for that matter.

I feel that my decline  is accelerating and that the trend is not a good one!   It took 2001 until 2011 to move from EDSS Scale 1 to 4 and from 2012 until 2014 to move from 4 to 6.   Now in six months I have moved from 6 to the top of 6.5.  It is not hard to map this rate of progression against the rest of the EDSS scale and be very concerned. 

With this being my current state of affairs I wonder if:

  • First, given the rate of my decline can we expedite the next steps (PET Scan and second opinion) that we discussed in our last meeting?
  • Second, if we do deem the Alemtuzumab to have been ineffective, is there anything(!) else that we can do to slow disease progression (NHS or private)?
I am getting desperate to save any amount of function as my quality of life is declining quickly.  I recognize that my case presents a challenge but appreciate any help that you can render.

I look forward to seeing Dr. Scalfari in October.  I do appreciate the help that I have gotten thus far and am hopeful for any possible assistance on the above.

Sincerely,  

Will Kostelecky

Wednesday, August 26, 2015

Month 7 - Need to Rename Blog

The name of this blog is obviously not accurate at this point.   I was hoping to blog about a positive result and that has just not been the case.  So the first question is whether to blog at all?  My rate of entries has gone way down but I am still adding the occasional article so I guess I will keep posting as the mood strikes me.

So what to call the blog?  Maybe just Fighting MS.

I am still going to try to be open in my posts but the high likely hood is that I will not tell all.  Some things are just too hard to talk about.  Some of the things that I may mention might also be upsetting to some readers.  I dunno.  We will see.

Tuesday, August 25, 2015

Month 7 - Everything in Slow Motion

I used to be in a hurry.  Not sure I knew why at times but in a hurry.   I still feel that urge, which is really strange because I am retired and while I am busy there is nothing that I am doing that requires me to hurry!

Unfortunately even if I did need to hurry I could not.   I guess this is relative.  There is my normal pace which varies from slow to really slow so I guess on a really slow day a hurry could be just slow? I don't mean just walking either.

There were times on business travel where I could wake up, take a shower, dress, and be in the hotel lobby in 10-15 minutes.  This was usually when I had gotten a call from my boss who was in the lobby ready to go and asking where the hell I was so there was a sense of urgency!

Now taking a shower is 45 minutes to hour experience with an hour or two to recover from the heat.  Everything in slow motion from getting undressed, to getting in the shower, to showering, and then given the impact of the heat, down to extra slow motion for the getting out of the shower, dried, and dressed.  Frustrating but what can you do?

Tuesday, August 4, 2015

Month 7 - MS and Cancer

Everyone knows someone that either has cancer, had cancer and survived, or had cancer and did not survive.  With one in five people destined to have cancer in their lifetime the odds make it at least somewhat likely that the reader may face, or have already faced, the disease.

These numbers make it obvious why cancer research gets the attention that it gets.  Luckily there has been some spin-off from that research to the field of MS treatment.  The drug Alemtuzumab being an example (whether it worked for me or not)!

I can imagine a scenario where it was first realized that Alemtuzumab might help with MS.  Maybe this is far fetched and whimsical but here is what I would like to think may have happened.

Imagine someone with that is already suffering from MS getting the news that they have cancer.  As if things were not already bad enough they have a possible death sentence on top of a death sentence.  I would like to imagine that they are pretty severely impacted by the MS, severe difficulty walking, if they are not already in a wheelchair.   Part of the treatment that they get for their cancer is Alemtuzumab.  They have to be pretty depressed at this point!

Now in order for my story to have the ending that I want it to have they have to get the news that post treatment scans have indicated that their cancer is in remission.   Imaging the surprise of all involved, however, then the MS suffering cancer patient walks into their appointment to get this news rather than having to be wheeled in!

I know it probably did not happen like this but it could have....

Monday, August 3, 2015

Month 7 - Met an Alemtuzumab Miracle

Last week I was in Charing Cross for a follow-up appointment with my Neuro and visited the MS day ward to get my monthly blood test done.   While I was there I met a young woman that was one of the first MS patients in the UK to get Alemtuzumab. 

When she got the treatment a couple of years ago she was in a wheel chair and was not able to work.  She now walks quite well though still uses a cane for balance and is back at work.  This is what I was hoping for as a best case.  Well, not the work part, the walking part!

Unfortunately it does not seem that the treatment has had any impact and it really should have shown its face of improvement by now if there was to be any.  What I am seeing instead is continued disease progression.

The visit to the neurologist did not provide any positive light.   The scans show no new damage to my mylin (in the form of lesions) yet the disease has progressed.   It seems there are two flavours of MS...one that shows as lesions and one that does not.   The former is the one that responds well to treatments such as Alemtuzumab and the stem cell regimen that I was hoping might be a final chance.   The one that I seem to have is not so cooperative.

The next step is a PET scan to see if there are lesions that are being missed and a consultation with another neurologist for a second opinion.   The NHS is doing what they can.  I guess it is just a matter of hoping for the best.



Monday, July 20, 2015

Month 6 - Summer Half Over

Time is flying by and we are past the half way point of the summer.   It has actually been a pretty nice summer contrary to popular belief about the weather in England!  I will take the English weather any time over the extremes we had in Baltimore...particularly August when there were days when even the healthy version of me was pretty much paralyzed with the heat and humidity.

Of course in England homes don't have A/C so when we do get a really hot day it can be a challenge to stay cool.   This is especially true when your man cave has multilple computers and multiple 3D printers in constant operation!  Generally not an issue but I did invest in a little portable A/C unit that does a good job at dehumidification though can in no way keep up with all the heat generation that I put on it!   Between the De-humidifier, and having the unit point right at me,  it does the job.

Anyway.   Aside from a couple of days where heat and humidity took a high toll on my I have not been feeling too bad.   Not better by any means but at least a little stable.  Doctors appointment next week and should see what if anything the scans had to say.

Friday, July 10, 2015

Month 6 - Please tell me this was not a "Lesson"

Last Friday morning, a week ago, I had the second IV of steroids.   In an earlier post I mentioned that I had to pressure the night shift into not making wait for shift change.   The nurse that finally decided to set me up had a lot of trouble getting the cannula into my arm.  As in multiple painful attempts each time complaining that my skin was tight.  As you can see from the picture it is still grossly black and blue.

This was the worst, by far, experience that I have ever had with getting a cannula inserted or blood taken.  Including all the other times that I have been poked in the same ward or downstairs in the same hospital.  Or anywhere.  Three, or was it four, attempts each more painful than the last?

It only occurred to me yesterday that a paranoid person would wonder if it was a deliberate lesson that I was being taught.   That lesson being to to wait for the shift change next time?  I hope not.  I really don't want to believe it.   Maybe skin does tighten up after a day of steroid treatment.

Thursday, July 9, 2015

Month 6 - Steroid High - Steroid Crash

In my last post I mention feeling better.  I continued to feel better through Saturday.  Really good in fact.  No, I had not thrown down my crutches and proclaimed that I was healed, but I did feel pretty good.  Which was then followed by a couple days of feeling really quite bad.

I am trying to be English here and do the whole understatement thing.  In American terms I felt like absolute crap.  Sara did a little research and learned that this is not exactly unusual with steroid treatments.  I have had them before but never with such an extreme reaction.  Obviously a testament to the condition of my body at this point.

It is a week since the steroid treatment and I am feeling better.  Particularly since the weather is cooler and the humidity lower.  Not sure what impact the steroids had but have to hope for the best.

Interestingly, if you can call pain interesting, I have been fighting what Sara thinks is a Sciatica Nerve issue that is impacting my left leg.   It could be.  It completely went away during the steroid high and seems to respond to Ibuprofen.   Both implying an inflammation?

Friday, July 3, 2015

Month 6 - Pacing...

...in front of Nurses Station seemed to help.  That and some begging.  IV was done at 9:00 and I was home by 10:00.   Lovely.   Nice day here as well.  Back door to man cave open, sun shining, temperature cool as the HEAT WAVE has broken.

Am feeling a little better as well.   Not sure that I can attribute that to the steroids as the weather can be such a large factor.  I will take it one way or the other.

Month 6 Hurry Up and Wait

Got to Charing Cross at 20 till 8 hoping for an early start but now waiting for shift turnovers.  Do no understand why I can't be starred thereby saving the day shift some time??????

Thursday, July 2, 2015

Month 6 - Week of Time with Doctors

On Monday, which I admit was still Month 5, but I did not get around to posting, I saw a foot doctor as I had developed an infection in a couple of toes.   Antibiotics from my GP had fixed things but the foot was still swollen and I wanted to make sure there was not an issue.  We have private medical insurance through Sara's job so I got a private appointment sooner than I would have gotten an NHS appointment.

Here is were the health care system in the UK gets better than the one in the US.   In the US if you have insurance you are in the queue for treatment with the other 70% or so of the population that also has insurance.   In the UK if you are a legal resident you are covered by the NHS and you have the queue for treatment with 100% of the population.   And since the UK is not spending the 15% of GDP on health care that is being spent in the US (to cover part of the population) ... some things don't happen that fast.

Enter private insurance.  If you are lucky enough to have private insurance then things really step up.  Almost no waiting.   Private rooms.   Wood paneled waiting areas.   Anyway, I was in and out of seeing the foot doctor in 15 minutes with advice to not worry about my foot.

Ok, so I have other things to worry about.   If I am not mistaken I am in the middle of a relapse.  Unfortunately impacting my left leg which up till now has been my "good" leg.   Also my hands and arms are weaker.  Not good.   Saw the Neurologist on Tuesday.    Today I was in Charing Cross, same room as before, getting an infusion of steroids.   Tomorrow another dose.  On the 10th some MRI action, and then at the end of the month another meeting with the Neurologist.

Am hoping the steroids help and maybe that some of how I am feeling is due to the weather ... which has a pretty dramatic effect at times.  I am a solid 6.5 at this point and leaning towards higher rather than lower.

Monday, June 29, 2015

Month 5 - Complaint about the NHS

I have been complimentary of the NHS now I want to whine a little.   Actually not just about the NHS as I had the same gripe about the medical establishment in the US.

Why has the rest of the business world, and even most of the government, moved to allow, and even encourage, electronic means of communication?

My GP practice has just started to offer an online consultation which I have used and whole heartedly support but they don't offer a simple contact form that could be used instead of a phone call.   I particularily wish they had this facility as they have been impossible to contact by phone the last couple times that I have tried.

Same comment in regards to the MS Team at Charing Cross.   I have an email address for one of the nurses but she works with trials and not the day to day treatment.   Email addresses should be available just like phone numbers AND people should be expected to respond to email within some reasonable amount of time.

Ok, there are issues with workflow control around personal email.   Just as there are around phone contacts.   But with email there are all kinds of systems that can be easily implemented to manage that workflow.  Free ones even (I can like open source stuff now that I am not in corporate IT)!

As I said, I had the same complaint in the US.   I remember sitting in my neurologists office observing his assistant.   She was adamant about not giving out an email address to patients.  I would then watch her on the phone with a patient inevitably spending the first minute or two on small talk that would not be part of an email dialog.   Handling of email can also happen at any time filling in otherwise idle time.   Sure there are cases where a phone call is required, and there are people who do not use email.  In the former fine, make the call, in the latter case, make the call knowing that this particular patient probably belongs to a generation that will not be around much longer anyway.  Interestingly the doctor was all over email.  It was the gatekeeper that was against it.   Same generation to which I just referred.

Ironically I recently had an experience where I was working with the Social Security Administration, their office in the US Embassy in London, and the NHS.   The embassy had requested my medical records and I was trying to get a status.   Working with the NHS was PAINFUL.   I left a couple messages on a contact form only to have them be ignored.  I could not find a relevant email address for any kind of records function.  Meanwhile all of my communications with the embassy were by email.   All of my exchanges happened within the service level they advertised and they were all helpful.

Frustrating.  What does the medical establishment have against electronic means of communication?  The gatekeepers union?

Thursday, June 25, 2015

Month 5 - Did Dracula have MS?

Everyones symptoms are a little different so I am not sure to how many people this observation will apply...but...I think one of those that might have been able to relate was Dracula.  

I am at my best (for what that is worth) in the middle of the night and at my worst in the middle of the day.  As the sun rises I start to feel weak and lethargic and as it sets I regain some energy.  I have become a little nocturnal though I have not gone to the extremes of popping into a coffin at sunrise and rising at sunset.  

Then there is the possible body chemistry connection.  Note that what follows is purely a fanciful conjecture as I am not going to experiment!   Body chemistry plays a role in how well an MS damaged body transmits signals across the nervous system.  Exertion changes that chemistry to the determent of movement.   Heat is part of that reaction as heat is evil for most MS sufferers but I understand that the body chemistry also changes when your muscles work (which explains my symptoms getting worse when I exert myself as I certainly don't work hard enough to raise my body temperature!  A drug called Fampyra (Ampyra in the states) changes the body chemistry in a positive way (minor unfortunately).

So here is the fanciful conjecture.  What impact did the fresh blood have on Dracula's body chemistry and therefore on his MS symptoms?  It would have had to have had some effect.  As I recall there was no substitute for the real thing either.   Has to be fresh and warm and human.  Not exactly something that the National Institute of Health or the National Health Service is going to research is it?

Just sayin'

Wednesday, June 24, 2015

Month 5 - Posting and Optimism Linked?

It has been long enough that I am changing the format for post titles to just reflect a month since my treatment.   Given that I am doubting that the treatment has had any positive impact I am thinking that, if I continue blogging, that I will need a new name for the blog.  Maybe just Fighting MS.

As I look back on the posts that I have done to date it is obvious there is a link between my optimism around the treatment and the number of times that I have posted:

Month Posts Comments
Feb 14 In for the treatment.
Mar 47 Out and feeling optimistic.
Apr 0 Where is the recovery from my stay in the hospital?
May 4 Where is the positive impact on disease progression?
Jun 1 to Date What is next?

As I write this my level of optimism has continued to flag.  I don't think that the treatment did me any harm but unless it suddenly kicks in then it has also done no good.   My disease has been progressing, as MS does, since my diagnosis.   As the myelin has eroded it seems like the threshold for further damage has become lower.  

In any case I am at the point where I almost always need two crutches to move around.  Fatigue levels have also not improved.  Climbing a flight of stairs leaves me as tired as scaling a cliff did at one time.

I am not sure where we go from here.   There are simply not a lot of treatments for MS.  There are only 250-350 thousand people suffering from MS in the US.  By contrast almost 40% of people will have a cancer of some form during their lifetime.  Funding, and the options that this provides, reflect those numbers.

My next appointment with the neurology team at Charing Cross is next week.  I have a set of MRIs scheduled for the middle of July and then another meeting with the doctors.  Hopefully there will be some options.

Saturday, May 30, 2015

Day 97 - What Makes for a "Good" Day (+88)

I have had more bad days than good days since my treatment four months ago.  But what makes for a "bad" day versus a "good" day?  The following is an interesting way of categorizing MS disability and provides the basis for expressing how I feel on a given day:

Expanded Disability Status Scale (EDSS)

Score Description
1.0 No disability, minimal signs in one Functional System (FS) where the FS's are Pyramidal (motor function) (P), Cerebellar (C11), Brainstem (BS), Sensory (S),Bowel and Bladder (BB), Visual (V), Cerebral or Mental (Cb), Other (O)
1.5 No disability, minimal signs in more than one FS
2.0 Minimal disability in one FS
2.5 Mild disability in one FS or minimal disability in two FS
3.0 Moderate disability in one FS, or mild disability in three or four FS. No impairment to walking
3.5 Moderate disability in one FS and more than minimal disability in several others. No impairment to walking
4.0 Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m
4.5 Significant disability but up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance. Able to walk without aid or rest for 300m
5.0 Disability severe enough to impair full daily activities and ability to work a full day without special provisions. Able to walk without aid or rest for 200m
5.5 Disability severe enough to preclude full daily activities. Able to walk without aid or rest for 100m
6.0 Requires a walking aid - cane, crutch, etc - to walk about 100m with or without resting
6.5 Requires two walking aids - pair of canes, crutches, etc - to walk about 20m without resting
7.0 Unable to walk beyond approximately 5m even with aid. Essentially restricted to wheelchair; though wheels self in standard wheelchair and transfers alone. Up and about in wheelchair some 12 hours a day
7.5 Unable to take more than a few steps. Restricted to wheelchair and may need aid in transferring. Can wheel self but can not carry on in standard wheelchair for a full day and may require a motorized wheelchair
8.0 Essentially restricted to bed or chair or pushed in wheelchair. May be out of bed itself much of the day. Retains many self-care functions. Generally has effective use of arms
8.5 Essentially restricted to bed much of day. Has some effective use of arms retains some self care functions
9.0 Confined to bed. Can still communicate and eat
9.5 Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow
10.0 Death due to MS

When I entered the hospital for my treatment I was a solid 6.0 but with an occasional regression to 6.5 though this was rare and usually only for brief periods.   On leaving the hospital I have been a solid 6.5 with only occasional improvements to 6.0 and these usually only for brief periods before the fatigue pushes me back to 6.5.

The worrisome thing is the trending which has seemingly continued since I left the hospital.  In the first couple months after leaving I did feel like I was improving...more time at 6.0 before dropping back to 6.5.   Lately it seems like the time at 6.0 has been going backwards.   For the past two days this has actually reversed and I have felt like 6.0 for more of the day than I can remember.  I wish I could explain why.

So.   When I say that I am having a good day it would be a majority of the day at a 6 and a bad day is the majority at 6.5.  Lately the days have been largely pretty bad (as in 6.5) with the thankfully rare occurrences of as bad as 6.8 or so.  Today and yesterday would be rated better but only to the extent of given them a 6.3-6.4.

Thursday, May 28, 2015

Day 95 - Followup Appointment - Four Months Since Treatment (+86)

Had a follow-up appointment today at Charing Cross.   Time flies as it has been four months since my hospital stay.

I had talked to Johnny on the phone some weeks ago to confirm that my blood and urine tests were looking good.  At that point I expressed my concern that I was really not feeling good, fatigued and worse, continued progress of MS symptoms.   At that point Johnny assured me that all the test results look ok and that recovery, and the time to see an impact from the treatment, can range from two to six months.

Same message today.   Next month I have a series of MRIs and a follow-up with the neuro.  Maybe by then I will be feeling better.   Dunno.   In any case we will see.

Saturday, May 16, 2015

Day 83 - MS and Manual Dexterity (+74)

Having retired from being an IT leader, with no hands on technical skills other than PowerPoint and Excel, I have been retooling myself as an inventor/maker.   I have always been interested in electronics and in the interface between the real world and the computer.   So this is what I have been doing with myself.

I had not really thought about this, and I am not sure it would have made a difference in any case, but my choice of past time may not have been the best one for someone with advancing MS.   Working with small electronic circuits requires manual dexterity!   I have never been the most coordinated of people in the first place but add MS starting to rob me of manual dexterity and you can have some frustrating moments! 

Tuesday, May 12, 2015

Day 79 - Jury is Still Out... (+70)

...deliberating as to whether the nine days in the hospital was worth it.   I have not posted for a while as there has been little to say other than what would sound like whining.   I continue to battle fatigue, and what's worse, further degradation of motor function. 

Before going in for the treatment I was walking inside the house with a cane and only occasionally with crutches.  Over the past weeks I have been trying to use just one crutch but have struggled to do so most of the time.  I have also had some loss of sensation and control in my hands and arms which is truly worrisome.  This comes and goes but I would prefer it to not be around at all.

What is interesting is that I felt like I was recovering until about six weeks ago (time of my second physio visit).  I had been primarily moving around on one crutch and was feeling positive.   It has gone either downhill or sideways since that point in time.

There are three possible reasons for how I am feeling.  The first being that my body is fighting an infection.   The second reason would be that I am still recovering from the treatment.  The third, and obviously worst case, is that the treatment had virtually no positive impact, and may in fact, have added a setback.

The first reason is unlikely as I really have no other symptoms of an infection and sure enough my monthly blood and urine test was normal but for the lower white cell count (which is to be expected). 

The second reason is possible given that the recovery period for the treatment can be as long as six months.   I get the feeling that this is somewhat unusual but still possible.  It all depends on how ones body deals with the damage caused by the drug.   Given that I spent nine days, instead of five, in the hospital I can only hope that my body is just being cantankerous.

Obviously, I am not a fan of the third possible reason as I am not sure what would be next.  There are not a lot of alternatives for people suffering from MS at the point where I am in the disease progression.

Monday, March 30, 2015

Day 36 - Glacial, as in my Speed of Recovery (+27)

Seem to have recovered from my crash of the past several days, at least I hope so anyway!   Went to the Cotswold's to celebrate parent in-laws 40th anniversary and was moving pretty slow throughout.  Scooter and two sticks mandatory.  

Ironically there might be an aspect of stress that makes my symptoms worse.   As in it is stressful to drive somewhere an hour and half away to stay in a hotel for a night.  Even more stressful than a trip to China used to be.  

Was feeling a little better on Sunday when we got home so tackled a project in the Man Cave that has been needing doing.  Pulled all the old wiring out of one side of the cave and got rid of an Xbox 360 that was not getting used.   No, not because I have grown up, but rather as I have a gaming quality PC that has replaced it!  In any  case, ouch.   Ouch being how I felt after getting started on the job and then wondering why?

I survived and have a whole box of wires that I pulled out and have not put back yet.   Amazing how much stuff can accumulate in a year and a half.   I know it should not count as exercise but it feels like it to me and so I am counting it as such!


Friday, March 27, 2015

Day 32 - Got Going, Stopped, Napped (+24)

Pretty much sums it up.   Got all energetic after the PT session.  As in 'energetic' not as in 'Energetic' and certainly not 'ENERGETIC'.   In any case that had me moving around again on only one stick and doing a modicum of exercise on Monday afternoon and then on Tuesday.  Then Wednesday and Thursday kinda crashed.

I wish I understood why some days are so much better than others.   This has always been the case with my MS and I suspect with others as well.   Not to mention a host of other diseases where this is also likely to be the case!

Is it the weather, something I ate the day before, or just the ebb and flow of the complex machine that is my body?  Weather is clearly a factor with MS as heat is the bane of most people that suffer from the disease.   Humidity is also a bad thing.   Anecdotally I have heard that Arizona has more than it's fair share of people that have relocated.  Which seems very odd as I don't think of Arizona as being a cool place...?  

I have tried to correlate how I feel with state of the weather and have somewhat loosely correlated a worsening in how I feel to humidity but also to changes in the weather.  But loosely.  What I have had better luck in correlating is the result of what I eat on how I feel the next day.

Basically the list boils down to just about everything that I would put on the top of my "like" list!  Things like bacon and ice cream for example.  Eating out in general.   Eating in general!

Two factors seem to have influence, first and easiest to understand, but also seemingly more temporary, is salt.   A salty meal that results in me being dehydrated over night has me waking up feeling like crap, crap, crap!  Easy solution is to re-hydrate and this usually works well and pretty quickly.   This reaction makes sense to me as a change in the body chemistry caused by being dehydrated and resulting in a change to the way nerve signals are conducted makes perfect sense.

What makes less sense is the impact of saturated fats.  As in what is in bacon, ice cream, and a lot of other stuff that tastes good.   I have observed a clear impact in how I feel the day after eating a meal high in saturated fats.   Unlike a meal that was salty, there is no glass of water that makes me feel better.   Are the saturated fats just worsening my symptoms or are the helping the disease to progress?   There are a zillion diets out there that fix MS and some of the acknowledge a link to saturated fats.  Of course there are a zillion other things that if you just do them, or pay for them, will have you walking, nay even running again.

So, to make a long story short, the whole ramble above doesnt really have anything to do with the past three days or even today!  Just sayin'

Tuesday, March 24, 2015

Day 29 - Gotta Get Going (+21)

I think the visit by Zoe must have convinced me that I have to get going.  Not sure where I am going to but I need to get going there!  Actually I have known that even before the treatment this blog was inspired by but it is hard. 

Our session yesterday was just an assessment but she did point out a number of things that I am doing that I should not be doing.   Things like the way I walk, climb stairs, descend from stairs, and turn corners.   Hmmm.   She did say that I sit ok!  Seriously, paying attention to the way I do all of these things will help to train my quads which is where the bulk of my problems walking and with balance originate.

She was only here for an hour at the end of which she asked if I wanted to carry on longer.  NO!  I was already worn out.   I did feel better a little later and through the day spent most of the time that I was up and about using only one stick and paying attention to how I walk.   In addition, I went up the stairs in the approved manner.   Not so much coming down though.

Monday, March 23, 2015

Day 28 - Physio Visit (+20)

Met with the Physio Therapist today for first assessment.   It was only an assessment and it wore me out!   She did know her stuff though.   I am obviously not the first MS patient that she has seen (as it is her speciality).  Just in observing me move around she made a number of observations about the way I am doing things that is just not right!

In the next session she is going to get down to excercises and the setting up of a program but in the meantime there are some simple things that I can do that will help.   Like paying attention to how I walk and to how I go up the stairs!

It is also clear that I need to spend some time each day doing some excercise.  May be obvious but when excercise cause all of my symptoms to flare it is not exactly something one looks forward to!

Have not written over the past couple of days, to some extent because I have been feeling the same, if not worse, and also as we had company.  Ok, that is not really the reason.  Maybe I was just feeling sorry for my self!  I am feeling a little better today, at least until Zoe came and gave me all kinds of tests!

Day 28 - Physio Log (+20)

Excercise Diary

Notes on below.  The number in parenthesis after the week number is the number of days since treatment ended.   The number in parenthesis after the day is an assessment of how I felt on that day on a scale of one to five with five being how I felt prior to the treatment.

Week 1
(+18)
Activities/Exercise Time Taken Feeling Afterward Recovery Time
Sat



Sun



Mon (3) Initial Visit Hour Little tired Couple of hours
Tue
(3)
Laps of lounge on crutches and bottom step. 
Most of day on single crutch. Cleaned kitchen, straightened up lounge.
15 minutes
2 hours
Pretty tired
Wed
(2)
Crashed!  Moving on two sticks.


Thu
(2)
Still crashed


Fri
(2)
Still crashed







Week 2
(+25)
Activities/Exercise Time Taken Feeling Afterward Recovery Time
Sat
(2-)
Cotswolds - Still crashed.  Moving on two sticks and not well at that
Bad
Sun
(2+)
Home from the Cotswolds - Felt better in the afternoon so tackled project in Man Cave to sort out wiring. 3 Hours Very tired Went to bed
Mon
(3)
Continued to work on Man Cave.   Two trips upstairs to move things to closet. Organized and sorted stuff.  Swept and mopped floors.  Felt decent through the day but crashed after dinner until bed time. 4 Hours Extremely tired Went to bed
Tue Trip to Charing Cross to see Dr Nicholas and for a follow up blood test.  Focus of the day!


Wed



Thu



Fri








Week 3
(+32)
Activities/Exercise Time Taken Feeling Afterward Recovery Time
Sat



Sun



Mon



Tue



Wed



Thu



Fri








Week 4
(+39)
Activities/Exercise Time Taken Feeling Afterward Recovery Time
Sat



Sun



Mon



Tue



Wed



Thu



Fri








Week 5
(+46)
Activities/Exercise Time Taken Feeling Afterward Recovery Time
Sat



Sun



Mon



Tue



Wed



Thu



Fri








Week 6
(+51)
Activities/Exercise Time Taken Feeling Afterward Recovery Time
Sat



Sun



Mon



Tue



Wed



Thu



Fri








Week 7
(+58)
Activities/Exercise Time Taken Feeling Afterward Recovery Time
Sat



Sun



Mon



Tue



Wed



Thu



Fri








Week 8
(+65)
Activities/Exercise Time Taken Feeling Afterward Recovery Time
Sat



Sun



Mon



Tue



Wed



Thu



Fri








Week 9 Activities/Exercise Time Taken Feeling Afterward Recovery Time
Sat



Sun



Mon



Tue



Wed



Thu



Fri



Friday, March 20, 2015

Day 25 - More Ups and Downs (+17)

Another day similar to the one that came before!   I was feeling sorry for myself when Sara reminded me that in all the blogs that she read there were numerous that had weeks three and four actually being the worst.   Ok.   I will stop feeling sorry for myself.

Recognizing that I need help getting back into some kind of shape...not that where I started from was that great...I do have an appointment with a physio.  

On a side note.  A while ago I participated in a trial of Tysabri, an MS disease modification drug, that is approved for Relapsing, but not Secondary or Primary Progressive MS.   I left the trial because I was having some side effects that convinced me that I was on the active compound and after 18 months I was seeing no change in the progression of my disease.  I am not sure, given the clarity of hindsight, and the fact that one of the side effects (severe itching) has stayed with me, that I was on the active or that I made the right decision.   In any case that is not why I rambled on to this topic.

The trial was in London at Charing Cross that the pharma company doing the trial paid for my taxi journey in to the city.   I had a regular driver and over the months spent driving in and out of the city we got to know each other pretty well.  

So, any way, finally to the point, I continue to use Jimmy (real name Zamir) for rides as he is great with me as a disabled passenger and over the months we have also become friends.   He had encouraged me to get some PT and when I told him that I was going to do so he mentioned that he had a neighbor that might be able to help.   Sure enough, his neighbor is not only a trained physio therapist, but she has a specialization in MS and works for the local MS society.   How is that for a coincidence?

Anyway, I have a consultation with her on Monday and then the first real working session the following week.   Am so looking forward to it.   NOT!   I am sure it is the right thing to do though!

Thursday, March 19, 2015

Day 24 - Ups and Downs (+16)

This is starting to get old.   I do feel as though I am improving but I hit patches where I feel like road kill.   Felt better in the morning once I had gotten out of bed and stretched out.   Felt pretty good through the morning.   Moved around the house on a single stick pretty much all morning.

Had lunch, and as usual once my digestive system cuts in to action, kind of crashed.  Back on two sticks and moving slow.  Interesting how my digestive system works.  It's like my body only has so much energy to go around and digesting food takes precedence?   If it is a hot meal the effect is amplified by the heat but even a cold lunch kicks me in the teeth.   This has been a factor for a while and not just since the treatment.   Just the threshold seems lower post treatment.

During the late afternoon I hit a patch of fatigue that had me just about asleep at my desk.  Got up and moved around and felt better if wobbly.

Anyway, have been struggling all evening as well.  Little bit of vision disturbance and hands tingling in addition to being wobbly.  If it were not for a feeling that on some dimensions I am improving I would be worried!

I have scheduled a PT session for Monday.   First session is an evaluation so am not expecting to get a work out.   Scheduled a followup session in a week or so to get rolling.

Day 24 - Disincentive for "Late" Sleeping (+16)

Waking up in the morning is generally a low point for how I feel.  This is actually not a statement related to the treatment but was the case before as well.   This morning was particularly bad.   Lying in bed I felt fine and was able to do some leg lifts and bends.   Felt pretty good until I tried to sit up.   It was murder.  It was also a relative sleep in for me as it was 6:30 not the 5:00 that I often am out of bed.

What I don't understand is that I had gotten up to go to the bathroom two hours previously and felt much better...as in it was not murder to get up!   Why would things be so much worse across that relatively small span of time?

I have been up for an hour now, and have had the obligatory cup of tea, and am still a little stiff but moving much better.  

Wednesday, March 18, 2015

Day 23 - Start Day Feeling Ok...... (+15)

Started the day feeling reasonably good.   Not back to before the treatment but reasonably good.  As in was able to move around on one stick trying to get some things done around the house.   Was industrious for a little while then hit a wall.

Fatigue has always brought out my symptoms (as it likely does for anyone with MS) and today is no exception.   I don't expect that will change but post the treatment the threshold is much lower.  No surprise, recuperation is not an overnight thing.

As I have said before, I do need to push myself to excercise in some form of a program.  To this end I am making contact with a physical therapist who knows something about MS and can help push me.   Not looking forward to it but I am doing it.  Honest!

Tuesday, March 17, 2015

Day 22 - Previous Title Still Applies (+14)

Endurance, that is, or the lack there of!  I have to call about some PT!  Keep putting it off thinking that if I feel like I have a little more endurance built up......... Hmmm.   Maybe I should just "Do It!".

Getting up in the morning is always hard as I wake up with my back and legs as stiff as boards.  This has been particularly true post the treatment.  Some mornings better than others.  This morning not so good.   Did loosen up through the day so moved around to get a little excercise.  Had lunch and a wave of absolute fatigue slammed me over the head.  Put my head on the desk for a few minutes but then forced myself to get up and felt better for it!   This has happened before the treatment and I am sure has to do with  medications for twitching and spasming.

It is 14 days now since the end of the treatment and I am ready to be back to what ever it was that I called normal.   Not there yet though.   I do feel like my nervous system might be getting there but my endurance and fatigue levels are a big old headwind.

Sunday, March 15, 2015

Day 20 - Endurance, Or the Lack Of It (+12)

Woke up feeling pretty good.   That is once I got out of bed a stretched a little bit.  Am hugely stiff in the morning and especially when I have slept in a little.  As in until 7:00am.

Then I got active with cleaning up the house as it was an absolute disaster.  Had not been touched since Sara left and it was not particularily neat at that point.  You would think that there would be only so much mess a guy could create in two days but I did a good job.

Don't confuse active with a normal kind of active, I mean my kind of active where I scurry around for 15 or 20 minutes and then have to take a break.   In any case by the time the house was neat I was shattered.   I have to figure out a way to build some endurance to fight the fatigue.

Have sent a note to a physio group but not heard back from them.

Day 20 - To Sleep, Perchance to Dream ... (+12)

... as one who is able bodied.  When I dream, I dream as I used to be not as I am now.  In my dreams I walk and even run, though I never ran much to be honest!  Last night, however, I dreamt of MS and I guess of my search for help.

I usually don't remember a dream beyond the context but I do remember being in a wheel chair with Sara pushing me but it was set in the current time and I had just had my treatment of two weeks ago.   I am not sure where the wheel chair came from.

We were having a discussion with some people, that I think I recall as being family from the States, about treatments.   Everyone was proposing ideas of something they read or saw on the Internet.  As anyone with MS knows there are a lot of these from Acupuncture to You Name It.  I may post about some of these later come to think about it.



In the dream I was taking the science based side and arguing that medical evidence did not support most if any of these "cures" but my family was quite adamant that I needed to do something!   That is about it for that dream.   More than I usually remember!

Saturday, March 14, 2015

Day 19 - Too Much to Say (+11)

I will warn you now that this post might be TOO MUCH INFORMATION.   High on the list of reasons for doing this blog is to record my experiences for someone else with MS that might be considering the same treatment.  So there might be a post where some bodily functions are discussed when proper folk avoid such topics.

Interesting side effect from the treatment. 

I take a drug called Fampyra (Ampyra in the US) which is sometimes called the "walking drug" as it can have the effect of significantly improving an MS patients ability to walk.   It acts by changing body chemistry a tad such that nerve impulses are transmitted and received better.   This helps when your nervous system is leaking transmissions from your mylin (insulation) being eroded from your nerves by your imune system.  I find that the Fampyra actually helps a little with all of my symptoms which is not to say that any single impact is profound.  Worth taking though.

Now the TMI part.  One of the common side effects of Fampyra, that I have been dealing with for years is constipation.   Resulting in hard little rabbit turds.  A diet high in fibre is absolutely essential.  The side effect from my treatment?   Relatively normal poop.  No idea why or for how long this will persist.

Friday, March 13, 2015

Day 18 - Not Much to Say (+10)

Not much to say today.  Feeling more tired that yesterday.  Tired of being tired.   I know, I know, the predicted recovery is for two to four weeks of unusally high levels of fatique.  It is almost two weeks so I should be just about done with it? 

Going to see about scheduling a Physio for next week to see if we can't work on building some endurance.   Not going to enjoy that but am sure it is the right thing to do!  Sara says so anyway. 

Got myself a haircut today.   Note to self.  Next time one decides to spend time in the hospital get a mega cut on the way in.

I am a bachelor this weekend.   Sara is off with University friends (and their young children).   Young children as in the kind that incubate germs!   Not the best thing for a weakened immune system!

Thursday, March 12, 2015

Day 18 - Almost Knocked Myself Over (+9)

Feeling a little better again today.   Scurrying around on my two sticks, and occasionally just one stick, trying to get things done around the house and I almost tipped myself over.   I think that I am recovered enough to be able to get up without help but it has been enough of a worry that I had been keeping my mobile in my pocket when I am up and about.

So, how did I almost fall over?  I have never been a paragon of grace and virtue.  Maybe virtue but certainly not grace.  Ok, not virtue either.   In any case, I am a bit of a klutz and this has NOT improved with my having MS.   I drop things all the time.  Often one or more of my sticks.

So today I go to lean stick one up against the wall while I plan on hobbling around on stick two.  For some reason though stick one decides that it does not want to lean against the wall but really wants to fall on the floor landing on my foot.   Now this would not be a big deal except that one of the feature that I get with my version of MS is a very heightened reflex reaction.  When a doctor tests my kick reflex I suggest they stand well to the side.   So, when the stick lands on my foot my leg spasms and I just about fall on my ass.  

That would have been embarrassing.   Luckily I was able to catch myself before I ended up in a heap on the floor.  Sara had suggested that some Physical Therapy might be a good idea.  I think she is right though I am going to hate it.

By the way, I just added a suffix to my posts to count up the number of days from the end of my treatment.

Wednesday, March 11, 2015

Day 17 - Another Day Another Nap! (+8)

I suspect that all diseases are the same in there are good days, less good days, and bad days.   Today fit the description of less good than yesterday though not really bad.

Slept in a real bed last night for the first time since returning home.   My concern was always how stiff I am in the morning and this morning was worse than usual!   Strange observation, and this is something that feeds my insomnia, but I can wake up at 4:00am in the morning having been asleep since 10:30pm and not be that stiff.   If I fall back to sleep and get up at a normal hour, ok say 6:00am, those last two hours seem to be overly contributing to how I feel when I do get up?

This morning I slept until 6:30am and woke up as stiff as a board.   Going down the stairs was a slow and excruciating process.  Like climbing Mount Everest in reverse.  Ok, maybe not that hard but I did not have a Sherpa to help either.

So, anyway, all day have felt a little more fatigued than yesterday.  Did do some light cleaning though. In an earlier post I talked about some electronic gizmo that could track my condition.  It might be easier to just log how long I can be active, as in hobbling around, before I absolutely have to sit down.   Do you know how long it takes to clean up a kitchen in 10-15 minute increments followed by a break?

Tuesday, March 10, 2015

Day 16 - One Day at a Time! (+7)

Was feeling quite good this morning.  Spry as spry could be.   Well, by that I mean, almost as spry as before I went into the hospital.   One slight problem.   My fatigue threshold has been reset to very low.   Was pretty active in the morning, had lunch, and WAMMO...time for a nap.

It is interesting how eating lunch or dinner always seems to cause my body to slow down, maybe while it processes what is in my tummy?   This one is particularly bad as lunch was a big cup of very hot soup.   Sara made a great soup this weekend and I had to have some.   Hot stuff really does not do my nervous system any favours!  In any case I have a delivery of a prescription that I have to wait for before I can close my eyes.

As Sara has said all along, echo'ed by my cousin Donna more recently, ya just gotta take it one day at a a time!

Monday, March 9, 2015

Day 15 - If I Ran the NHS (+6)

FIrst, I would be hugely frustrated by the pre-ponderance of negative press!   Obviously in an organization the size of the NHS there are going to be problems but there are also a lot of great people doing great things.  The real issue, in my opinion is that the NHS is a system where demand driven by an aging and fatter population is far out stripping any increases in funding in a time of government austerity.

So what can be done?   The same thing that private enterprise has had to do to stay competitive.  Cut down the costs associated with non-value added processes in favor of those that deliver value to the customer, or in this case, the patient.   I am sure the NHS is working on this, and I have no doubt how difficult this is to achieve in such a large organization, but as a patient I can not help but see opportunities.

An example that comes to mind is the appointments scheduling process.   Why is there no web based system for this process?.  The UK has 89% of its homes connected to the Internet.  Use snail mail for the 12% that do not (plus some % of Luddites) and you can cover the vast majority of the population with an Internet solution that would be a) easier for the patient, b) cheaper to administer for the NHS, and c) could dramatically reduce cancellations and their costs by having a confirmation loop in the process.

This is one example and it came to mind as I wait for an email response to a question that I posted to the NHS appointments scheduling service.   Two days later and no response so I will be forced to call.   Efficient use of email alone will save time over handling phone calls but the worst case is to have to handle both due to response times on an email not meeting their own service level!

As I said, one example, but where there is one there are bound to be more.  Reduce the number of back office staff handling appointments and increase the number of nurses and doctors.  Alternatively use some savings to attack the next opportunity creating a self funding improvement program.

Day 15 - Two Weeks! (+6)

Two weeks ago at this time I was getting a first blood test to verify that the first of five days of treatment could proceed.   Nine days later that five day treatment regime was completed.  

Sara keeps reminding me that I have been out of the hospital for only a week and that I should be patient about how long it will take to regain my strength and get out from under the expected side effects of the treatment.   Naturally, being a person of near legendary patience, I am taking this all in stride.  NOT NOT NOT!   Note that I am not expecting to be better off than when I entered treatment but I do want to get back to where I was, as bad as that might have been, as soon as possible!

In any case I am still bouncing back a little at a time.  I have even been able to get around the house a little with only one stick!   This is important as it is difficult to do just about anything on crutches and the scooter helps but is cumbersome around the house.   I know that I am likely to end up in a wheelchair at some point but I am fighting that eventuality.

I would note that after dinner last night my body crashed and I was struggling even on the two sticks but this is to be expected.   The side effects listed for the treatment suggested that fatigue was to be expected for the coming weeks.  One day at a time.


Sunday, March 8, 2015

Day 14 - Saw the Upstairs! (+5)

George Mallory might have said "Because it is there" when asked why he wanted to climb Mount Everest but my reason for climbing the stairs was much more simple.   Because there is a shower up there!   Am still weak from the treatment but continue to improve.   Climbing the stairs was an effort but the reward was well worth it!  Of course the heat of the shower put me down for a 10 count but even that was ok as I was clean.

It was strange being upstairs after having left the bedroom almost two weeks ago to go to the hospital.  Am also thinking of abandoning the couch tonight for sleeping upstairs.   The issue is one of tomorrow morning.   I am generally very stiff in the morning and going down the stairs could be a challenge.  Will have to decide.

Saturday, March 7, 2015

Day 13 - Weekend at Home (+4)

My East Coast of the USA friends may not appreciate this picture.  As you can see it's sunny here!  Almost 60°F as well. Don't worry though the bad weather that you had is coming our way rain, rain, rain.
My recovery continues.   Every day I feel a little, sometimes, tiny, bit better.   Am trying to be as active as possible but fatigue is the issue.  Yesterday I cleaned up the kitchen.   In fifteen to twenty minute bursts with breaks in between.   Took hours!

I have regained much of the use my hands that I had lost though a little numbness continues to come and go.   At the worst during the height of the treatment I could not have typed.   I am still struggling with some fine aspect of touch but make up for it with patience.   I was always well known for my patience (NOT).

Tomorrow might be the day we conquer the north face...e.g. the stairs.   We will see.  TMI alert.  I am not sure I can handle another "bath" using wash cloths and a kitchen sink full of water.

Friday, March 6, 2015

Day 12 - Sunburn from the Alemtuzumab (+3)

After four days of treatment I developed a rash on my stomach and chest that was truly impressive.   This is not an unusual side effect though the normal case would have been for it to appear a little sooner.

At this point it had already been decided that I would not be getting the fifth treatment until Monday (and that I might go home for the weekend) so I had asked for the IV to be removed.   I got scolded by my nurse for this as another had to be put in ASAP so that I could be pumped full of Antihistamines.   It was a truly angry shade or red and looked like the worst possible sunburn that one could get.

The ward doctor, a nice young man that looked very young to be a doctor (I am getting old) used this as a moment to remind me why they had not let me go home.   I think that he thought that I had been questioning their decision earlier.   I may have been disappointed to not be going home but I absolutely did not question the decision!

Interestingly, a couple days later and my chest and stomach are peeling just as if it had been a sun burn!   Truly gross.   I could take a picture but will not!   It is also itchy.   Got up in the middle of the night to take an antihistamine and put on lotion.

The body is a strange thing.

Day 12 - Recovery from the Treatment (+3)

No one had sugar coated just how bad I might feel as a result of this treatment so I can not claim to be surprised...but still!   I guess I was hoping for the best while prepared for the worst!    I would basically say that all of the worst of any MS symptom that I have ever experienced I am now experiencing again but all at once.   This is getting better on a day by day basis but I am still incredibly weak which means that any amount of exertion brings those symptoms back to the forefront.   Something interesting about MS in that conduction of nerve impulses changes as fatigue (and body temperature) change your blood chemistry.   As the myelin that protects my nerves has eroded to a severe extent I am very susceptible to these changes.

This has effected most of my body but most noticeably in my legs and my need for two sticks to walk while staying up right (important for getting from point A to point B).   My arms are also impacted though to a lesser degree and manifested mostly in a lack of strength though dexterity remains reasonably high.   My eyesight, particularly my right eye, is also impacted with some vision disturbance coming and going.

Perhaps most frustrating has been my hands.   At the peak of the treatment I was experiencing quite a bit of tingling and numbness of both hands with my right worse than my left.   Again, I have experienced this before but this was at the worst level it had ever been.   At this point it would have been impossible to type as I am typing now though I was able to manipulate the key pad on my iPhone and iPad to post to this blog (though Siri actually took dictation for many entries!).  Day by day since my last treatment this has improved and while I still have a little impact they are coming back to normal.   Thankfully.

Hindsight is always 20-20 but I wish that I had thought about measuring the impact of the treatment before I went to hospital.   Over the past year I have been working pro-bono on a device for the NHS that is designed to measure the recovery of cardiac patients.   It measures the strength of a kick over a sustained one second period allowing for ten kicks with the best of those kicks being recorded.
It has not gone into production yet for a variety of reasons but I would have liked to have adapted it to measure a couple aspects of my condition.   I don't have a stress gauge like the one the NHS would use (expensive) but think I could have rigged something with a cheap distance sensor (maybe measuring the distance that I am able to raise my leg)?  Oh well.   Coulda done.

Thursday, March 5, 2015

Day 11 - Compliments for the NHS (again) (+2)

As I stated before I have had no complaints about the NHS.

The care from the nurses and doctors and even the porters at Charing Cross was great. My neurologist stopped in to check on me multiple times and has kept me in the loop via email.  There are a couple of other posts where I talk about the Charing Cross team.

Once I was home my GPs office helped me through a somewhat complicated process to arrange blood tests. And then tonight my GP called me to make sure that I knew the results of those blood tests and to ask if I needed anything else (the second test was up even more so she was pleased).  This was at 1900 in the evening so I suspect that she could have had other things to do!

I feel really lucky to have the socialized medicine of England here for me! 

Day 11 - Getting Around the House (+2)

I am getting stronger but still need two sticks to get around the house. Two sticks not only help with my walking, they are also handy for not tipping over.  Anyway use of two sticks creates a bit of a problem when trying to carry a cup of tea!

I just happen to have a little scooter. Is a little thing that falls into the size of a suitcase for transport. A very heavy suitcase. We bought it for things like going shopping or for trips and it has come in handy.  Not so much on the cobbled streets of Portugal though!

In any case I'm using it to get around the house. Not because I can't walk with my two sticks. But because of a cup of tea!  How English is that?  One slight wrinkle... There is a bump getting into the man cave that the scooter can't jump.  Damn!

Day 11 - GREAT NEWS! (+2)

I just talked to the team at Charing Cross and they were able to get access to my blood test results.   My platelets are behaving and in fact are up to 137 (from 85).   This is well and truly a good thing.  I am not sure if this was a factor but Sara read that fresh berries are a positive factor for platelet production.   I like fresh berries.  I ate a bunch of fresh berries.  I may have some for lunch for that matter...though my bloods have just been drawn so it wont exactly matter for that purpose!

Day 11 - Waiting for ANOTHER Blood Test! (+2)

Am number 57 and they are on 52 and moving fast.  In no time I will have yet another needle pushed into me!
So lets see.  I was in the hospital for nine days.   Each day there was a blood test.  There were also two lines put in for the IVs.   Nightly injects to help prevent DVT.   Two more blood tests after discharge.   The way I count that means I have had an extra couple dozen holes put in me over the past two weeks.

Day 11 - You Can Only Sleep So Much (+2)

Which, of course, is my way of rationalizing a post at 04:30 in the morning!  I still feel a little like there is a sword hanging over me with a) not knowing the results of yesterdays blood test and b) having to get another one today.   Until I know that my platelets are behaving I can not call the first part of this journey "done and dusted".   I am not completely stressed about it, as in that is not why I am posting at 04:30 in the morning, but it is hanging there!

In any case, by the time I woke up having to pee, got off the couch to do so, and hobbled to the bathroom, I was quite awake so here I am.  The challenge now was that I had a craving for a cup of fresh coffee.  Sara got me a pod coffee maker for Christmas and I have been enjoying it a lot.

Dolce Gusto Piccolo Coffee Machine

I wanted a cup now.   So to the rescue some cling film and my Man Bag.  I was really worried that I was going to get into the Man Cave and find a very wet Man Bag but the cling film did its thing admirably!



BTW, I read somewhere that platelets don't like caffeine so I will be sparing in my use of the machine!

Wednesday, March 4, 2015

Day 10 - Blood Test Results (+1)

I am not 100% sure that the hospital has gotten my blood test results.   Tiny complaint about the NHS is that it is a huge organization with a lot of bureaucracy.   The treatment that I got was done at a specialist hospital in a Trust different from the home trust where my GP resides.   To get the blood test without going back into London I needed to get my GP to request it.  The GP office was great and made it easy to get the appropriate test.   The results, however, will not automatically go to Charing Cross as they were not the requestor.

No matter how hard I pleaded policy is against them giving the patient any results.   Not even one number.  Ok, probably the same in the States but it is my blood after all!?!?!

I left a message with the appropriate folks downtown but the primary nurse that was expecting the result was out sick.   I also sent an email to my neurologist but god only knows how many messages he gets a day.  I will find a way to make sure the loop has been closed tomorrow one way or t'other.  I feel fine and not really terribly concerned but all this effort to get a blood test today one would hope someone has seen it!!!

If I were the NHS I would make it easier for trusts to work across each other.  It is silly that my blood test could not have been requested by Charing Cross but done by a hospital in a trust next door!  It saved no one money and added a risk to my care.

I would also do something so that patients could have a closed loop communication via the Internet with their care providers.   There are plenty of software solutions that would provide this capability off the shelf.  Including ones that are open source (e.g. cost nothing to purchase).  

Day 10 - Bloodtest Done! (+1)

Scaled that rock face.   Got in and out of Sara's car without a forklift.   Used the clinic's wheel chair as my scooter decided to through a hissy fit in the parking lot and not start.  Got a little panicky because I thought I would be late for my appointment.   Sara made me wear a baseball cap because my hair looks like the Exxon Valdez parked on my head as I had not been able to clean up before going for the blood test (TMI).

In any case, I was actually moving better today than yesterday though this is not saying much.  Any little helps. 

Did have a little navigating to do of the NHS process around blood tests.  At my local GP they looked surprised that I would want the results before next Monday!  Luckily I was able to call the pathology lab and they indicated the results would be available this afternoon but only for a doctor to inquire.   Why can't I know my own results?   Note that this would likely be the case in the states as well.

Job done.

Day 10 - Bloodtest (+1)

Was able to get a 9:30 blood test at my local doctors office.   EEK!  That is only a little time from now and I am a mess.   Can not believe that I am going out in public like this but have no choice.

Day 10 - Woke up at HOME! (+1)

Great to wake up at home today!   Slept downstairs, and will likely be down here for a while, but at home, home, home!   Now sitting in my Man Cave surrounded by my technology and looking at this on my big old monitor instead of an iPad or iPhone.

Today's rock face to scale is a trip somewhere to get my blood tested.   I say somewhere because I am hoping to talk my local surgery into fitting me in to their schedule.  Second choice is a local private clinic and third is the local hospital in High Wycombe.   The height of the rock face is higher from left to right!

Tuesday, March 3, 2015

Day 9 - HOME!!!!!

Say no more!

Day 9 - Reflections

Sara brought me and some comfortable trousers to wear and I have them on now.  

When I was diagnosed with MS I decided to live the one life that I had to the fullest. In the years since my diagnosis I met my wife Sara, traveled all over the world, lived on a boat, bought a new boat to live on, bought beautiful place to live with Sara and finally moved to England to another beautiful home.   I have tried to enjoy things to the fullest and have few if any regrets.

Getting back to the trousers. One of the things that I used to do many years ago was to climb rocks.  The trousers reminded me of that and of the time shown in the picture below.  
The challenging climb that I am now looking forward to is to get up a flight of stairs in my house. Things have changed.  Must deal with it.

Day 9 - FINALLY

I have gotten my walking papers. Have to get blood test for the next two days at the local doctors office but not here. The bracelet comes off!

Day 9 - Home Today???

Well the last treatment is done. Bloods taken this morning. The question is: will I go home today?  Feeling really really really tired. Also a little bit nauseous. Could just be a stress!   Rash still looks pretty bad and ther are spots of red on my upper legs.   Not sure what is going on there but will ask the doctor.

Monday, March 2, 2015

Day 8 - Almost DONE!!!

Only 12 minutes to go on the 30 minute flush and I will be done!  Hopefully bloods are good tomorrow and then home!