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:

Did my first 'consecutive days of physio' last week.  Second day (Friday) was tough since I was worn out, but I need to push myself if I want more strength gains.  Friday night, coincidentally or not, I was very tired.  Starting Monday, I will be doing physio 5 days in a row until I go back to work in mid-to-late April.

My PT remarked that he would have like to have seen my walking before the treatment.  I found the video that Anne took and showed him.  I posted it here on October 30, 2014, but here it is again:

Below is a video of me walking today, about 4 months after treatment, and after about 2.5 months of physical therapy.  There is no doubt that physio, and maybe the ice cream as well, is making me stronger, which is translating into better walking ability.  I still desire a lot more walking improvement, and I still have major strength and flexibility issues (especially with my right leg), so there is lots more physio to do, and lots more walking practice required.

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My most recent MRI was done in March 2014.  I got a copy of the MRI and its associated report to bring with me to Israel.  I read the report for interest's sake.  The one thing from that report that is burned into my memory is the comment "...serious disease burden..." written in the section where the Radiologist is remarking about my spinal cord.  For me, this is qualitative evidence that MS has impacted my legs a lot.  Given this, and the very slow (if at all) healing ability of the nervous system and its components, I cannot realistically expect my legs to ever be what they once were.  I will be very happy if I can one day walk with a 'normal' gait, but I realize that my current walking ability may be as good as it gets.  Anecdotally, my legs have always felt like the part of my body that has been most impacted by MS.  I plan to make them as strong and as flexible as I possibly can, and see how it all plays out.

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There was a fairy concert at our house today.  The special guests were Tinkerbell and Periwinkle:

One of Aesop's fables is The Tortoise and the Hare.  The main message of that story is that slow and steady wins the race.  Another message is that if you don't take things seriously and do your best no matter how confident you are, you might lose, just like the Hare did.  For me, this story very closely relates to my post-HSCT journey.  Slow and steady, don't give up, and take it seriously.  I tried to move quickly when I got back to Canada after receiving treatment, and I expected results (i.e. improvements in my legs) to show up as just as quickly.  When they did not, it nearly broke me.  But thankfully, it did not, and it slowed me down some, which was very beneficial, and very necessary.  Slow and steady it is, and slow and steady it has to be.

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I am continuing to do physical therapy, and have inquired about having a therapist come to my home 5 days a week.  I am inherently lazy, and having somebody here every weekday will force me to complete my exercise routine no matter how I am feeling, instead of making excuses not to.

The biggest challenge to my mobility these days is my right leg.  It is getting stronger (still weaker than my left leg), but my hamstring and calf muscles in my right leg are extremely tight.  Extremely.  This does not allow the leg to move properly and fluidly which throws off my balance.  One stretch I am doing a couple times a day is lying on the floor with my right leg up on the wall.  This stretch works well because I can just lie there (appealing to my laziness) for a long time, allowing my leg to get a good stretch.

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In September 2013, my Neurologist prescribed me the drug Fampyra.  He said that is it not a disease modifying drug (DMD) - there are not any DMD's for primary progressive multiple sclerosis - but alternatively, it is a symptom management drug that may improve my ability to walk.  Initially, it did, but after almost a year of using the drug, its benefit dropped off to almost nothing.  Whether my body got used to it and adjusted accordingly, my disease progressed to a point where the drug was not beneficial to me, some combination of the two, or for some other reason(s), I was not sure, and I did not care.  By that time I had been accepted for HSCT and been given a treatment date.  I decided that I wanted to stop taking Fampyra about 1 month before HSCT, so I stopped taking it September 2014.  I wanted to get the treatment 'clean'; I wanted to see how my body responded to the treatment without any outside influence.  It's too early for me to say if the treatment has stopped MS progression, but my gut feel is that it has.  I will know for sure in the coming years.