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.

On Feb. 13, my Hematologist said to me, "All your blood counts are in the low end of normal range and they are trending up.  You are out of the risk zone.  See you in 3 months; at that time we will also check to see if any of your vaccinations were affected by the treatment.".  Good stuff.  But I still don't want to get sick, because it really set me back last time, so I will be careful.

I bought a walker recently.  I was hesitant to buy it, since my initial (and typically stubborn) thought was that it would be a step backwards (moving from a cane to a walker).  But it is really very helpful. I barely rely on it (my grip is very loose), but it gives me confidence when I walk, knowing that if I lose my balance it will keep me upright.  This allows me to concentrate on walking using good form (accentuate lifting my feet, take slow and sure steps), without having to think about anything else, which increases my desire to walk more often.  Which is what I need to do.  Walk more often, and walk properly.  It is definitely a very beneficial piece of equipment for me. It's made of aluminum, the front two legs have wheels, and the back two legs have knobs on the end of them like a cane.  It looks something like this:

I am stretching more these days.  My hamstrings were actually a bit sore after the first day I stretched with purpose.  They are extremely tight, especially the right one.  Years of muscle spasticity without any stretching and minimal exercise has made them tight like ropes, and very likely shortened them as well.  I've also started to take magnesium (in powder form) daily, since I have read that it helps to relax muscles.

This week I am increasing my physiotherapy session frequency from 2 to 3 times per week.  And 95% of my sickness is gone.  I am feeling decent, so I will take advantage of it and do more exercise.

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February 15 was our youngest daughter Aly's 3rd birthday.  How time flies.

Not feeling very good physically these days which affects my mental well being (constantly thinking to myself: was HSCT worth it? is that all - two months feeling great, and now back to where I was?).  Legs are stiff, weak, and 'loud'.  Feeling tired.   I believe this is no more than the post-HSCT roller coaster I've read about, amplified by the sickness I got (a cold).   But that doesn't make it any easier to endure.  My advice to everybody post-HSCT: try to avoid getting sick.  It wasn't a severe sickness, since I was able to recover without having to go to the hospital - but it still made me feel very shitty, and I lost some strength gains and 2 weeks of exercising.   My physical therapist said that some of my strength is still there, but I sure did (and still do) feel rotten.  My legs are prone to "locking out"(when I walk) a lot these days, so the first order of business for me is to get them stronger to reduce, and possibly eliminate, the frequency of them locking-out.  That will improve my mobility, and walking confidence.

 I've been told that the first six months post-HSCT are the most difficult, and that any sustained improvement will likely not (if at all) take place until 18-24 months after HSCT.  I believed (and acted / expected as much) that if I just rested and ate, HSCT would quickly fix me like magic.  I finally accepted - after some good conversations with a few people close to me and with myself - that this is not true.  For me, HSCT was the easy part - I rested and let the drugs do the work.  Now, I have to do the work.  And there is lots to be done.  And, the science says that HSCT stops you from getting worse, and any healing is a bonus.  I need to reel in my expectations a little, keep thinking positively, and be patient.  And be patient.  And be patient.

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Exercise

Feb 6: treadmill walk 10 min; elliptical machine 10 mins
Feb 7: treadmill walk 10 min; elliptical machine 10 mins
Feb 8: treadmill walk 20 min

Feb 9:
(1) marching 3 x 10 each leg (hold for 2 sec. at top)          
(2) stepback lunge 3 x 20 (10 per leg)
(3) calve raises on stairs 3 x 10
(4) toe raises on stairs 3 x 10

Feb 10:
Morning
Physical therapy.  My legs were shaking & quivering like it was my first physio session
Afternoon
(1) calve & hamstring stretching
(2) toe raises on stairs - 4 x 10
(3) pedal machine 10 minutes

Feb 11 (3 months since Day 0):
Walked 1/2 mile on treadmill (1/4 in the morning, 1/4 in the afternoon - took 13 minutes each 1/4 mile at speed setting of 1.2)

Feb 12:
Physio

Tomorrow have an appointment with my Hematologist.  I am interested to find out what, if any, affect my cold had in the immune system indicators in my blood.

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My life has been a series of very fortunate events and lucky bounces.  I have a great wife, great children, great friends, and a good job, which together provide a solid foundation for a great (and steady) life.  When bad or unlucky bounces happen what I usually do is shrug them off and just say to myself "I guess it wasn't meant to be", or "Don't worry about it, it will all work out in the end (even Steven!)" or "It will turn up somewhere, don't sweat it".   And every time, things just seem to work out okay.  I've never really had to work hard for anything, I have just kind of 'fallen' into good things.  This HSCT for MS thing is entirely different.  Yes, I am very lucky to have been able to have HSCT, but now the proverbial ball is in my court, and I can't do what I usually do and just let the chips fall where they may.  I have to do something about it (i.e. put in the necessary work), or all the time and money invested in HSCT will have been wasted.  This is new for me, and is providing a significant challenge mentally.  But at least I have finally realized it.

Somebody in the HSCT for MS and other Autoimmune Diseases Facebook group that I am a member of made this picture to describe the HSCT treatment and recovery process timeline.  As the saying goes, a picture is worth a thousand words:

I was sick with a cold the last couple of weeks (Jan 22 - Feb 5), so I did not exercise at all.  I definitely was on a low elevation on the HSCT Treatment & Recovery roller coaster ride.  My legs hadn't felt that shitty since before I left for Israel.  But I am lucky, and thankful, because I had a place to go (Dad's) with round-the-clock care on demand.  And I am thankful that Anne's parents were able to come to our place for 2 weeks and help out.  And I am thankful it was likely only a 'minor virus' (said my Doctor when he checked me out).  And I am thankful I didn't require hospitalization (fever was close to, but never reached 38.0C).  And I feel better now.  Not entirely rid of the cold, but close.  It ain't gonna be peaches 'n cream all the time (thanks Damian Lillard), but I am very glad this sickness is behind me.  Back to exercising.  And stretching.  And home.

[DAY +78]  Aly has been coughing for a few days, so Anne took her to the Doctor on Monday.  He said Aly had a cold and would get over it in a couple days.  He also said that I should get away from her if possible.  So Dad picked me up Tuesday morning, and I have returned to my kingdom, aka Dad & Diana's home.  Anne's mom also drove to our place yesterday to help out around the house.  Having her there lets Aly stay home as long as she needs to get healthy, and will allow Elaina to do the same if she gets sick too.   And having another useful person around the house just makes things better.

Yesterday (Tuesday) night I had a slight fever and a sore throat.  My fever never reached the magic number of 38.0C, so I did not go to the hospital.  I woke up this morning with a throat that is slightly less sore, and I blew some yellow boogers into a kleenex.  Hopefully that means my immune system is getting stronger and is able to adequately deal with minor viruses.  I have no idea whether or not getting sick at this point in my HSCT recovery will affect my blood work (i.e. reduce some monitored parameters by some amount), but I will find out in a couple weeks when I see my Hematologist again.  There's really nothing I can do about that anyway, so I'm not gonna sweat it.  All I can do is get healthy, continue to get stronger, and improve my walking.

I am feeling lethargic today, so I will eat and rest lots today with the goal of getting healthy so I can get back on the exercise train.

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Another story about HSCT, this one is from Australia : https://www.youtube.com/watch?v=ozoKBN-6cNQ&feature=youtu.be

I hope HSCT will be a treatment option one day for all types of MS.  Everywhere.

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Nap time.

[Day +73] Being home is great.  I am trying to do more around the house since I believe it is good for me to try and move around some, and I know it is good to be helpful - I am trying to be a spouse again, and not another dependent for Anne.

I am definitely stronger overall than I used to be, but my walking is still pretty shitty.  So, I am changing my exercise to focus on (1) the small muscles that make up my hips, shins, and ankles; (2) my core; (3) my walking form and ability.  Our new treadmill has arrived and is ready for use, so I will walk on it - slowly and soldier-like - with the goal of becoming a better walker.  I also need to stretch more.  My leg muscles are very tight, making exercise and walking a little more challenging.

I am just over 10 weeks post-HSCT.  I have no new MS symptoms to report, no symptoms have gotten worse, and there has been small improvements is my strength of voice.  I am still tired - took a 3 hour nap today - but I've read that chemo can result in fatigue for months, even years after treatment.  I like to nap midday, but usually it's for an hour or less.  Three hours is an exception, not the norm.  My frame of mind is better too - this is because I know I've done all I can regarding medical treatment, now it is solely up to me to help myself.

I have no idea what the future holds.  If I did, I would gamble on sports and get very rich doing so.  I will keep exercising, keep myself moving, keep thinking positive, and see what happens.