November 11, 2015 was my one year anniversary of Day 0.  It was definitely a very up-and-down year.  I have received a great deal of emotional support from many people over the last year, and I am very grateful for it.  So thank you.  I have zero regrets about receiving the treatment (only wish I had done it sooner), so a big thank you to all who helped make HSCT for MS a reality for me.

How am I doing, MS-wise?  Overall, just before I got sick a few weeks ago, I was about the same as I was before treatment, which is a good thing.  My annual Neurologist check up in September produced similar results: after my Doctor's battery of tests, his conclusion was that I am about the same as I was in September 2014, with my right hand slightly weaker (I'll take it).  I am definitely worse now, but I attribute that to being sick, and I hope it is temporary.  Here is some info (and a video) about recovery from one of the more HSCT for MS knowledgable people, Mr. George Goss:

"...The biggest difficulty following HSCT treatment is being able to be patient. Realistically, no one should expect improvements before +1 year following transplantation. Improvemts materialize after that and the maximal benefit is seen 2-3 years as described by Dr. Burt in the first 45 seconds of the following video....

https://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel"

Exercising proved very beneficial for me the last 6 months when I was consistent.  Consistency is something that requires improvement on my part, or else use of my legs can quickly fade away.  I have not been consistent this whole month of November because I have been sick with a variety of maladies. This has zapped my energy, my appetite, and my ability to do basically anything.  Constantly lying around caused my back to stiffen up, and the combination of inactivity and a stiff back has not been good for my ability to be mobile.  Thank goodness for my rollator / Cadillac.  I believe the end to my sicknesses is in sight, and I am looking forward to feeling alright again.

Transitioning from M/T/Th/F to full-time M-F work hours was harder than I thought, and made me tired, but I made the switch to 5 days a week in September and haven't looked back (partly because I'm too tired to turn my head - but I believe consistent exercise will help minimize my tiredness).  The hardest thing for me to do is keep a positive attitude no matter what.  I realize that I gotta be patient, and my ability to do things and improve depends almost entirely on me pushing through and capitalizing on each day, but some days I just don't have it.  Those are the days I must channel my inner Rafael Nadal (or even King Robert the Bruce after he saw the spider).  Rafa always fights, and never quits, no matter what - two traits that I need to permanently adopt.  The alternative is not inviting.

My goals for 2016 are to exercise more and have a better attitude.  Talk to you in 6 months.

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Rest in peace Jonah Lomu.

My 6th month HSCT anniversary recently passed.  Again, I am very happy that I was able to receive the treatment, and the only regret I have is not doing the treatment sooner.  I have read many HSCT for MS articles, and they all say that the goal of the treatment is to stop progression, and any healing is a bonus.   If healing occurs it won't be for at least a year, and since the legs are the longest limbs (and therefore have the longest neural pathways), they will likely take the longest (longer than a year) to see improvements, if they see any at all.  My biggest MS induced problem is leg muscle spasticity and weakness.  My legs are currently unchanged from their pre-HSCT condition (but they do have their good days), and I am working to get my legs stronger and more flexible, with the goal of improving my walking ability.  The treadmill we have is helpful - I set it to a very slow speed and attempt to walk slowly, deliberately, and properly.  I will do that daily for the next few months and see where it takes me.

Other symptoms I have, either have not changed, or are improved one day and not-so-much the next.  Fatigue is reduced, but there are days that I am very tired.  Bladder urgency is greatly reduced, but I have had a couple days where my bladder urgency was like it was pre-HSCT.   My right index finger seems to be very slowly improving, but it's very slow.  And if I am tired, it is 'dead', just like old times.  My strength of voice seems to have improved too - some days are like old times, but most days my voice is stronger.

My moodiness, not an MS symptom but definitely a byproduct of having symptoms that make me feel shitty, is alive and well - just ask Anne.  But I believe that my mood is my choice, regardless of how I feel, so I will make better choices going forward.

That is it for now.  I will provide another update in November, when my one year HSCT anniversary has passed.

For anybody considering HSCT for MS, I have no regrets and would do it again.  After all my research, it is obvious to me after reading the medical research stats that HSCT is the only MS treatment with a better chance of stopping disease progression than not.  Nothing else comes close.

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King James was The King last night.  It is a pleasure to witness greatness.

I have returned to work.  I was exhausted come Friday, but on the whole, forcing my lazy ass to get up and go to work every day has been beneficial for me on many levels.  As my stamina builds and I get into a routine in the coming weeks, I'm betting my exhaustion will fade away.

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In the video below, the second lady, Nicole Correy, was diagnosed with the same type of MS (primary progressive - PPMS) as I was.  The stats say that PPMS is the type of MS least likely to show any improvement following HSCT, and the odds of the treatment stopping progression are also the lowest of any type of MS, but still pretty good (in the 60-70% range).  Judging by the video,  Nicole's disability was worse than mine at the time of HSCT.  Two years have passed since her treatment and she has improved.  Her walking ability isn't perfect,  and it may never be, but she's able to walk without aid, and live independently.  That is my goal.  "There is no Plan B" (stole that quote, and it is a good one).

https://www.youtube.com/watch?v=ozoKBN-6cNQ&feature=youtu.be

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I am a basketball fan, and the NBA playoffs are underway.  This year, I am down with the King - I think Cleveland will win.

Anne talked some sense into me (and my ego), and the result is that I will be taking my walker to work when I go back.  If I fall, it could result in me getting hurt, and it's very likely that I will end up taking a proverbial step back.  No, thank you.  The best way to prevent me from falling is to have a walker.  It just makes getting around easier, especially when I am tired.  The goal is to get my walking ability to good enough level where a walker is not required.

The ideal outcome of HSCT for MS is to stop disease progression (any healing depends on other factors, and is considered a bonus).  It will take some time to determine if that has happened for me or not.  I had privately (and unrealistically) hoped that I would have improved enough by now (about 5 months post-HSCT) that I would be walking without aid.  But that is not true, and if it were then that would be great, and I would be a statistical outlier.

This post-HSCT recovery roller coaster has been a real crazy ride for me.  Up for a few days, then down for a few days, and repeat.  The emotions of it all are something I didn't anticipate, and so I don't always deal that well with them.  Having my family (immediate and extended) to help talk some sense into me has been necessary and beneficial.  Unfortunately for me, my stubbornness has slowed down my acceptance of their important and correct advice.  But, as the saying goes, better late then never.  The hardest thing for me to accept is how shitty my legs are feeling these days - no worse then they were before HSCT (maybe even slightly better) - but still shitty.  One thing that has (slowly) helped me accept is knowing that I had many lesions (or, as the Radiologist said, a "serious disease burden") on my spinal cord, which caused a lot of trouble with my legs.  HSCT does not heal lesions, its goal is to stop new one's from occurring (by killing MS), and allow your body to do its thing and heal if possible (that's right, healing is a bonus), depending on severity of damage done. the body's ability to heal, and some other things.  So, it seems to me (now) that it is foolish for me to expect immediate relief (and, even relief at any time is not guaranteed).  What I can do is be thankful, keep smiling, keep exercising, keep stretching, and whatever will be, will be.  But a positive mental attitude is paramount.

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Look out Gower Drive, there's a new sheriff in town, and her name is Aly:

I am very tired these days, and my legs are not co-operating either (they are stiff, 'noisy', wobbly, and generally uncomfortable), so I am stretching and sleeping a lot.  Could it be from pushing myself extra hard during my physio sessions?  Has my old friend MS returned?  Am I drinking enough?  Eating enough?  Is it temporary?  Permanent? Is my body fighting an infection resulting in symptomatic heightening?  Is this the result of permeant damage done to my body by MS?  Is this just part of the typical ride on the post-HSCT roller coaster?  I don't know the answer to any of these questions, so I just do what my body tells me and sleep (and stretch).  At least 8 hours a night, and 2 more during the day.  I will miss the daytime sleeps when I return to work in couple of weeks, but what you gonna do?

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My doctor and I have agreed that I will start off working 2 days on, 1 day off, and 2 days on.  If it turns out that I can't handle it, then I will adjust it as needed.  We will see how it goes.

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Walked outside today (with my fancy outdoor walker) to the street corner and back.  Something which I will keep doing, tired or not.

I have been asked more than once if I regret doing the procedure.  My answer is always no.  My only regret is not doing it sooner, which would have given me a greater probability of reversing some (or all) of the damage to my body caused by MS,  How much sooner?  The day after I was diagnosed in 2009.

Clinical data indicates that some (approximately 20-30%, I think) patients with MS do not respond to HSCT treatment.  Comparing how I feel now versus how I felt prior to HSCT, I believe that I have responded to treatment.  However, I am not sure what the future holds for me regarding MS.  Has the disease been killed off entirely or only partially?  Will the benefits that I have seen remain for 6 months / 1 year / 5 years / the rest of my life, or will MS return at some point?

Options I have are (1) doing the treatment again, at a facility with a higher intensity chemotherapy regimen if possible (with the aim of killing off the disease entirely), (2) getting what is called a chemotherapy "top-up", and (3) continue to exercise and do not seek further treatment.  I have read that a patient should wait at least one year before deciding, since the first year after treatment is very up-and-down - MS symptoms can come and go, and may affect your body more so than they did prior to treatment (temporary worsening of symptoms).  Therefore, judgement if the procedure was successful in halting disease progression during that time is difficult.

I have read that there is no better clinically proven treatment option for primary progressive MS (and all other forms of MS) than HSCT.  After at least one year following treatment, I will consider how I am feeling, discuss everything with my family, and then decide if I will seek additional treatment or not.

"Hey man, slow down, slow down.  Idiot, slow down, slow down.".  These words were written by a musician a few years back.  And I keep repeating them to myself, because this HSCT recovery for me is slow, that's just how it is and there's nothing I can do about it.  And I can't stop pushing myself just because I get mad since I want recovery to move faster, or I risk losing any gains that I have made.

On Sunday, I made my first trip to the grocery store in a long time.  We parked near the grocery cart collection thing, so I could grab a cart as soon as I got out of the car and use it as a walker.  It was great to be out.  I got physically tired by the end of the trip, but I am not surprised.  Physical stamina is not currently a strong suit of mine.  It's also great to see the snow melting outside.  This encourages me to go outside and move around, which is good.

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The standard for measuring disability in MS patients is the Expanded Disability Status Scale (EDSS).  A great picture of the scale and what each number represents was posted on the HSCT Facebook Group that I am a member of.  Here it is:

The last time I was 'officially' measured was at my Neurologist's office in September 2013.  Part of the Fampyra prescription process was to have my EDSS score recorded.  The nurse told me at that time it was 5.0 (score is given in 0.5 point increments).  I would estimate that by the time I went to Israel it was 6.0, which is the EDSS upper limit for HSCT acceptance at many facilities.  My goal over the next few years is to keep my level of physical activity high.  If that results in a reduction of my EDSS to 4.0, then I will be thrilled.

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It has been established that HSCT for MS candidates with the highest probability of ideal treatment outcome (disease progression halted, some reversal of disability) are those patients diagnosed with relapsing-remitting MS who have minimal disability (the sooner, the better).  This may be why, regardless of a patient's level of disability, the majority of treatment facilities will not treat patients diagnosed with progressive forms of MS (like me).  One of the facilities that will accept patients with a progressive MS diagnosis is located in Moscow, Russia.  The treating physician there was involved in an HSCT study that included progressive MS patients.  Although this study's population is small, and it is only one study, its conclusion (posted below) is promising for all MS patients, regardless of their diagnosis: