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.

---------------------------------------------

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.

---------------------------

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.

------------------

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

------------------

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.

--------------------

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?

--------------------

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.

---------------------

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.

---------------------

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.

------------------

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.

---------------------

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.

--------------------

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.

--------------------

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.

--------------------

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.

----------------------

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.

--------------------

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.

--------------------------

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.

-----------------

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.

-----------------

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.

[DAY +66]  Saw my Haemotologist today.  He said that my neutrophil count (http://en.wikipedia.org/wiki/Neutrophil_granulocyte) is slightly lower than last time, but all else looks good.  And then he said "There is nothing in your blood test results that concerns me.  See you in a month.".  Sounds good to me.  He also said to get to a hospital if I get sick, tell them what I went through, and have the Doctor there give him a call if they want more info.

Tomorrow I am moving home permanently.  I will miss the easy life where my only jobs were to tell Diana what I want to eat, bathe myself, and exercise.  I lived like a King.  But it's time for a less moody (not guaranteed) and more hopeful me to go back to reality and my family.

--------------------------

I am feeling physically strong, but my ability to walk needs improvement.  Lots of it.  At home I will walk more around the house, and when the treadmill arrives in 2 weeks, I will use it to improve my walking ability and endurance.


Today's exercise:

(1) Step back Lunge  - 3 x 30 (15 per leg per set)
(2) Walk one foot directly in front of the other (like a sobriety test) - 4 loops
(3) Sidestep, leading with one leg crossing over in front of the other leg, then next step cross over behind the other leg.  Each leg was the leading leg for 4 loops.
(4) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause 5 seconds while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(5) Seated on ball, raise straight arms to the side, hold when fully extended- 2 x 20
(6) Pushups (kneeling) - 3 x 10
(7) Seated toe raises (shin muscle), pause when toes raised - 3 x 10
(8) Calf raises (on stairs) - 3 x 10

------------------------------

Yesterday's exercise:

(1) Step back Lunge  - 3 x 30 (15 per leg per set)
(2) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause 5 seconds while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10 (a great core exercise)
(3) Pushups (kneeling) - 3 x 10

-------------------------------

Wednesday's exercise:

(1) Step back Lunge  - 4 x 20 (10 per leg per set)
(2) Walk one foot directly in front of the other (like a sobriety test) - 4 loops
(3) Sidestep, leading with one leg crossing over in front of the other leg, then next step cross over behind the other leg.  Each leg was the leading leg for 4 loops.
(4) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause 5 seconds while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(5) Seated on ball, raise straight arms to the side, hold when fully extended- 2 x 20
(6) Seated on ball, upright row exercise with thera-band - 2 x 20
(7) Pushups (kneeling) - 3 x 10
(8) Seated toe raises (shin muscle), pause when toes raised - 3 x 10
(9) Calf raises (on stairs) - 3 x 10

[DAY+63] For the last week or so, I have had a return of one of my MS symptoms - noisy / warm / pain-in-the-ass / nuisance leg 'action'.  My guess of exactly what this 'action' is, is this: it probably has something to do with damaged nerve cells, because it feels like they (nerves) are going nuts (which makes my legs warm).  It's hard to put into words exactly what this leg action feels like.  It's not painful, just a pain-in-the-ass, and can be a big nuisance if you can't direct your head elsewhere.  My initial reaction to this was "Son of a bitch!  I thought you were gone forever.".  Then I remembered a few things: (1) with HSCT treatment, the goal / ideal outcome is to stop disease progression, and any healing is a bonus and is gonna take time; (2) that I am only 2 months post-HSCT, and there are likely to be many ups and downs during the first year following treatment (which can include temporary worsening of pre-existing MS symptoms - I can say that this symptom is not any worse than it used to be); (3) I was diagnosed with Progressive MS, so every symptom I had showed up and stayed permanently - none of them left, even temporarily.  Who knows why the leg symptom I mentioned above went away for a short time following HSCT?
Hopefully this will eventually go away, but there is no guarantee, so regardless, I will keep exercising and eating.

-----------------------

Today's morning exercise:

(1) Step back Lunge  - 4 x 20 (10 per leg per set)
(2) Walk one foot directly in front of the other (like a sobriety test) - 4 loops
(3) Sidestep, leading with one leg crossing over in front of the other leg, then next step cross over behind the other leg.  Each leg was the leading leg for 4 loops.
(4) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause 5 seconds while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(5) Seated on ball, raise straight arms to the side, hold when fully extended- 2 x 20
(6) Seated on ball, upright row exercise with thera-band - 2 x 20
(7) Seated toe raises (shin muscle), pause when toes raised - 3 x 10
(8) Calf raises (on stairs) - 3 x 10

-------------------------

Yesterday it was tough to get going.  I blame my choice to take three days off.  Lesson learned.  Here's what I did:

(1) Step back Lunge  - 2 x 20 (10 per leg per set)
(2) Marching - 2 x 10 per leg [2 pound ankle weight to each leg -held each rep for 5 sec: difficult]
(3) Walk one foot directly in front of the other (like a sobriety test) - 2 loops
(4) Sidestep, leading with one leg crossing over in front of the other leg, then next step cross over behind the other leg.  Each leg was the leading leg for 2 loops.
(5) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause 5 seconds while extended, roll ball back towards body, slowly drop to crouched position, repeat - 2 x10
(6) Seated on ball, raise straight arms to the side, hold when fully extended- 2 x 20
(7) Seated on ball, upright row exercise with thera-band - 2 x 20
(8) Seated toe raises (shin muscle), pause when toes raised - 2 x 10
(9) Calf raises (on stairs) - 2 x 10

-----------------------------

I need to stretch my legs muscles more, they are asking for it.

[DAY +61] I had a great time at home with Anne, Elaina, and Aly this weekend.  I still tire easily and my legs need lots of work to even be in the same time zone as 'normal'.  This makes me not very useful around the house, but I have enough energy and ability to play dolls & board games with Elaina and Aly for some of the day, so Anne can zip around to do the many things she has to do.  I did 10 minutes on the elliptical machine while at home, and I felt 'strong' while doing it - stronger than I used to feel while exercising on the ellipse.  That is good.   All the post-HSCT exercising and physio deserves the credit.

Exactly 2 months ago today on November 11, 2014, I had finished my conditioning and chemotherapy, and received my bone marrow / stem cells back.  It was Day 0, and recovery had started.  The treatment part of HSCT was over with.  I feel very lucky and privileged to be able to see HSCT treatment in my rearview mirror.  That could not be possible without the large amount of support I received from my family, friends, and many other folks whom I've met once or twice, and some never at all.  Life of Elaina and Aly appears to not have skipped a beat, and my own life has been pretty easy throughout and after the procedure.  Neither of those would be possible without the hard work of my immediate family.  And the HSCT treatment itself could not have happened without being accepted for treatment by Prof Slavin, and looked after for by the various medical personnel in Tel Aviv and Jerusalem.

I have no idea what the future holds for me in the health department.  But at least I have been given a chance. Before HSCT, all medical stats indicated that I had no chance, only a poor quality of life awaiting me.  Thank you everybody.  I am very grateful.  And very, very lucky.

[DAY +58] Morning exercises:

(1) Marching - 3 x 10 per leg [no weight, but held each rep for 5 sec.]
(2) Step-back Lunges  - 3 x 20 alternating each leg (10 per leg per set)
(3) Walk one foot directly in front of the other (like a sobriety test) - 2 loops
(4) Sidestep, leading with one leg crossing over in front of the other leg, then next step cross over behind the other leg.  Each leg was the leading leg for 2 loops.
(6) Calf raises (on stairs) - 3 x 10 [knees slightly bent reduces leg shake a lot, and feels like calves are doing more work]

Diana massaged my legs afterwards, which was very soothing.  I will make an appointment with my RMT after I move back home for some leg massages.

Afternoon exercises:
(1) Pedal machine - 5 mins forward, 5 mins backward [trembling included]
(2) Seated on ball, raise straight arms to the side, hold when fully extended - 2 x 20
(3) Seated on ball, upright row exercise with thera-band - 2 x 20
(4) Normal lunges - 3 x 10 per leg

Once my shoulder feels better I want to get back to doing pushups.  And then when I'm feeling really (really, really) good, maybe some burpees.

Plan on going home tomorrow for the weekend.  There will be lots of walking for me in the house with Elaina & Aly.  Good.

[DAY +57] I did physio this morning.  It consisted of various core strengthening, balance, and walking exercises.

This afternoon I used my pedal machine for 10 minutes - 5 mins pedalling forward and 5 minutes pedalling backwards.  Then I did lunges (3 x 10 per leg).  There was lots of trembling in my legs during pedalling (think of it like a wet dog trying to shake itself dry), especially the right leg.  When the trembling occurred, I would say to myself, trying to speak to my legs, "Take it easy, everything is alright, no need to tremble.".  This worked decently for my left leg, but my right leg wasn't listening very well.  I eventually got angry at my right leg, so would I stop pedalling, grab my right leg and yell "Easy!" at it.  That worked some of the time, which is better than none of the time.

----------------------

I've read a lot about HSCT in the last year, and what I've learned is this: stopping MS progression is the intent / ideal outcome of the treatment; healing of any damage to your body due to MS is a bonus, and doesn't happen magically overnight.  Patience is hugely important.

Right, I almost forgot.

Well then, I will get as strong as I can and see what happens.  Patiently.

[DAY +56] This morning I felt very tired.  My muscles were not tired, but I just felt like you do when you don't get enough sleep - even though I did.  Regardless, I did some morning exercises:

(1) Marching - 3 x 10 per leg [2 pound ankle weight on each leg]
(2) Step-back Lunges  - 2 x 20 alternating each leg, had a chair in front of me for stability - this is a good one, lots of different muscles required to do it
(3) Seated on ball, raise straight arms to the side, hold when fully extended- 2 x 10
(4) Seated on ball, upright row exercise with thera-band - 2 x 10
(5) Seated toe raises (shin muscle), pause when toes raised - 3 x 10
(6) Calf raises (on stairs) - 3 x 10 [legs shake during this exercise]

Had a midday nap, then more exercise:

(1) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause 5 seconds while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(2) Used my stationary pedal machine / bike for 10 minutes on the lowest resistance.  My right leg 'trembled' for the whole 10 minutes, my left leg for about 2/3 of the time.  I believe that is a result of damage done by MS - it has happened before when I attempted to ride a stationary bike.  We'll see if that changes in the coming months.

--------------------

An important thing for me to focus on is to keep lifting my feet (especially the right one) when I walk.  Really emphasize it, march like a soldier if I have to.

Old habits are hard to break.

[DAY +55] My physio appointment today was moved to this afternoon, so I did some exercise this morning:

(1) Marching - 3 x 10 per leg [added 2 pound ankle weight to each leg]
(2) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause 5 seconds while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(3) Seated on ball, raise straight arms to the side, hold when fully extended- 2 x 10
(4) Seated on ball, upright row exercise with thera-band - 2 x 10
(5) Seated toe raises (shin muscle), pause when toes raised - 3 x 10
(6) Calf raises (on stairs) - 3 x 10 [legs shake during this exercise]
(7) Lunge  - 3 x10 per leg

This afternoon I did physio.  It was tough, mostly because I was physically tired.  I am not used to doing anything in the afternoon when I exercise in the morning.  But, it was good for me to push myself, and I need to build more stamina, so I will continue to do exercise (or some activity) both in the morning and in the afternoon from now on.

-------------------

Yesterday, Anne took the girls to see a 'Frozen' stage performance.  Here's a photo of Aly & Elaina with their friends Dahlia, Elsa, and Anna:

[DAY +53] I have been at home with my family since December 30th, and loving every minute of it. Both Elaina and Aly have been sick, each more than once, at various times throughout the Christmas Break.  Their sickness prevented me from coming home for a visit on Christmas Eve.  I am very happy that I got to see Anne and the girls.  I didn't do my exercise routine each day, I preferred to spend my time playing dollhouse or Operation, but I did do lunges every day.  And Anne bought me a pedometer for Christmas, so I am counting my steps each day, and there have been lots (thanks Elaina and Aly!).  When I am walking,  Anne quickly points out my poor form due to bad habits I developed over the last few years (e.g. dragging my right foot), so I'm now always thinking about correct walking form instead of only going for quantity/distance walked.  Tomorrow, I am going back to Dad's house.  I am sad to leave home again, but I will take advantage of my zero responsibility lifestyle at Dad's by exercising as much as I can.  There is no reason not to, and it's only going to help.  I have an appointment with my Haematologist January 16; if he tells me that all is good, then I will be moving home permanently that weekend.

----------------

There are a few clinical trials of HSCT for MS going on right now.  This link has details of a study that has data from patients that are three years post-HSCT.  Results are promising.  Hopefully, with more clinical trial data published in the future, HSCT will be a viable treatment option for anybody with MS, or any other auto-immune disease. http://www.sciencedaily.com/releases/2014/12/141229164854.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fmultiple_sclerosis+%28Multiple+Sclerosis+Research+News+--+ScienceDaily%29