[DAY +48] This morning my physio guy came by, and I was put through an assortment of exercises.  It was challenging, but definitely necessary.  His comment to me was "You are stronger today then you were when I saw you last.".  I have a long, long way to go to get to where I want to be physically, but getting stronger is good.

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I am very thankful that HSCT is available for MS patients, and that I was given the opportunity and the necessary support to obtain it.  The link below contains the story of Debbie Purdy.  She never had the opportunity to undergo HSCT for her MS.  I never got the chance to meet Debbie, but I salute her for taking control of her life when there was very little control available to her.  Rest in peace, Debbie.
http://www.bbc.com/news/uk-england-leeds-25741005

[DAY +47] This morning's exercises:

(1) Marching - 3 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(2) Standing on one foot (while holding onto chair), write numbers with other foot - 3 x 10 per leg
(3) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(4) Seated toe raises (shin muscle) - 3 x 10 [right leg weaker]
(5) Calf raises (on stairs) - 3 x 10 [legs shake during this exercise]
(6) Lunge  - 3 x10 per leg
(7) Pushup (kneeling) - 2 x 10

It's getting easier to do lunges and pushups - my 'form' is much improved - so I must be getting stronger.  Onward and upward.

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To my knowledge there are three types of MS: (1) relapsing-remitting (most common) (2) secondary progressive (secondary, because the disease morphs into this after some initial timeframe as r-r MS), and (3) primary progressive (primary, because this is the initial diagnosis; this is what I was diagnosed with).  The question of whether all 3 types of MS are auto-immune diseases has been debated recently.  There has been discussion in scientific circles that progressive MS may not be auto-immune, and therefore it likely has a different 'driver' of the disease than r-r MS does.  It has been established that progressive forms of MS have more of a neurodegenerative (death of nerve cells) effect on the patient's central nervous system, and relapsing-remitting MS has more of a demyelination effect on the patient's CNS.  The reason I bring this up is that somebody in the HSCT forum I am part of asked about the r-r vs progressive debate, and the best explanation I have read to date was provided by one of the more knowledgeable forum members, George Goss:

Autoimmunity and neurodedegeneration are not mutually exclusive as both can exist simultaneously. I have heard many doctors claim that relapsing and progressive forms of MS are two different diseases. But what are such statements based upon? My own view is that such belief is false and based solely upon superficial manifestation with no supportable underlying scientific basis (i.e. based upon superficial observations and no in depth research). Although it is true that the underlying etiological cause of MS is still a mystery, it is not necessary to know what actually causes it to treat it because the pathological operating mechanism of MS is reasonably well understood; self intolerant (lymphocytic) autoimmunity. Relapsing MS 'manifests' as demyelination, and progressive MS 'manifests' as axonal dystrophy (neurodegeneration), but this doesn't mean that they are fundamentally different diseases. The most plausible and rational explanation that fits the facts is that they are indeed all the same disease but simply with differing antigen binding repertoires in which progressive MS has an expanded epitope compared to the episodic form. This is why RRMS most often transitions to SPMS in which evolution epitope spreading (diversity expansion) occurs. This explanation would also perfectly explain why HSCT is the MOST effectively demonstrated medical intervention for ALL forms of MS, both relapsing AND progressive. . . .http://media.wayne.edu/2011/02/22/wayne-state-university-researchers-publish-results-settling

My opinion (based on info I have read) was, and is, similar - MS is an auto-immune disease.  No matter the type. And therefore, my belief is that HSCT is a feasible treatment for all types of MS since they are all auto-immune diseases, and here's my basic analogy: If I have a disease due to my liver secreting stuff that attacks my intestines (I have no idea, nor do I care if this is even possible - but it works for my analogy), I would guess that Doctors would opt for a procedure that goes after the problematic parts of my liver.  Since my disease is due to my immune system attacking my central nervous system, I opted for a procedure (HSCT) that goes after the problematic parts of my immune system.

Different types of MS result in different damage to one's central nervous system (as stated above), therefore there will be different requirements for healing (re-myelination, and/or establishment of new nerve pathways since nerve cells are very slow to grow, and may not even grow at all) once the disease is halted.  Healing occurs at different rates for different people, and healing may not occur at all, since it is very patient-specific.

I need a sandwich.

[DAY +46] This morning I awoke feeling a little bit lethargic.  I was a bit put off by this until I spoke with Anne.  Her comment was, "Well, how do you feel compared to before you went to Israel?".  Good point.  This week some days have been more energetic than others, but compared to all of my pre-HSCT days, my worst day this month is light years better than any day before my trip.  I used to have to fight to stay awake all hours of the day.  I dreaded even the most easy and insignificant everyday tasks (e.g. the 'long trip' to the bathroom) because doing the task was exhausting, and I just wanted to lay down.  Yes, my legs remain very weak and stiff, but at least now I have the energy to do something about it.

This morning's exercises:

(1) Marching - 3 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(2) Standing on one foot (while holding onto chair), write numbers with other foot - 3 x 10 per leg
(3) Seated toe raises (shin muscle) - 3 x 10 [right leg weaker]
(4) Calf raises (on stairs) - 3 x 10 [legs shake during this exercise]
(5) Lunge  - 3 x10 per leg
(6) Pushup (kneeling) - 2 x 10

[DAY +45] The last two days were filled with family, friends, and eating.  And some more eating.  It was great.  But two days of inactivity made my tight and weak legs feel tighter and weaker.  So, this morning I exercised, and did an additional set of some exercises:

(1) Standing on one foot (while holding onto chair), write numbers with other foot - 2 x 10 per leg
(2) Marching - 2 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(3) Lying on stomach, hamstring curl - 3 x 10 per leg [right leg is more difficult]
(4) Lying on side, bent legged adductor (crab exercise) - 3 x 10 per leg
(5) Lying on side, straight legged adductor (leg raise) - 3 x 10 per leg
(6) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause while extended, roll ball back towards body, slowly drop to crouched position, repeat - 3 x10
(7) Seated on ball, shoulder press (no weights)- 2 x 10   [difficult for right shoulder]
(8) Seated on ball, lateral raise (no weights) - 2 x 10
(9) Seated on ball, row exercise using therapy bands - 2 x 10
(10) Lunge  - 3 x10 per leg
(11) Pushup (kneeling) - 2 x 10

Exercise #3 is definitely the most difficult for my right leg.  Its movements during that exercise are not very smooth, but that will improve when the leg gets stronger.

The remainder of the day will consist of stretching, resting, and eating.  And some more eating.

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*Update*

Did two more exercises this evening:
(12) Seated toe raises (shin muscle) - 3 x 10 [right leg weaker]
(13) Calf raises (on stairs) - 3 x 10

[DAY +42] This morning I exercised:

(1) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(2) Marching - 2 x 10 per leg [right leg is weak, it wants to lockout when I lift my left leg]
(3) Lying on side bent legged adductor (crab exercise) - 2 x 10 per leg
(4) Lying on side straight legged adductor (leg raise) - 2 x 10 per leg
(5) Lying on stomach hamstring curl - 2 x 10 per leg [right leg is more difficult]
(6) Kneeling in crouched position with ball in front of me, raise up to kneeling position, then roll ball away from body, pause while extended, roll ball back towards body, slowly drop to crouched position, repeat - 2 x10
(7) Seated on ball, shoulder press (no weights)- 2 x 10   [difficult for right shoulder]
(8) Seated on ball, lateral raise (no weights) - 2 x 10
(9) Seated on ball, row exercise using therapy bands - 2 x 10
(10) Lunge  - 2 x10 per leg
(11) Pushup (kneeling) - 2 x 10

Pleased that I was able to do that much exercise.  We'll see how I feel tomorrow, but I think I will feel alright, and not overtired.

The rest of the day will involve eating, resting, and stretching.

[DAY +41] Yesterday was a day filled with rest, stretching. and t.v.  Today my physiotherapist came and I did many exercises.  My right arm and leg are definitely weaker than my left side (MS effects), and all my muscles need improved flexibility.  After I move back home, he said a good thing for me to do would be yoga - be it a class somewhere or a dvd at home - since it involves breathing, stretching, holding positions, and balance.  He also recommended a stationary bike / pedal machine to provide strengthening and range of motion capability for my legs.  I checked, and quality pedal machines go for <$200 on Amazon.  Should be here in 2 weeks or less.

I am a member of a very informative FaceBook Forum about HSCT.  Somebody asked about post-HSCT improvements.  Although there is no guarantee of improvement for any MS patient who undergoes HSCT, one of the more knowledgeable people in the forum, George Goss (who had HSCT 5 years ago for his Secondary Progressive MS and is currently doing very well), had this piece of good information to share on the topic of post-HSCT improvement:

"The three biggest factors that are predictive of post-transplantation outcome probability are #1) Morphology (beneficial outcome skewed towards relapsing cases vs progressive MS at time of transplantation), #2) EDSS (beneficial outcome skewed toward people that are ambulatory with lower EDSS at time of transplantation) and #3) Longevity (beneficial outcome skewed toward those hat have a shorter duration between disease onset and transplantation).  Additionally, symptomatic improvements do not typically materialize immediately following HSCT. Instead post-HSCT symptomatic improvements most often follow a temporal pattern that goes like this. . . . . People "notice" improvements at +12 months following HSCT, At +18 months the improvements become "obvious," and at +24 months the improvements become most "substantial." Dr. Burt describes this phenomenon in the first 45 seconds of the following video. . .https://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel.  
Cerebellar (dys)function(s) are usually the first/most complete symptoms to improve.Cerebellar functions are most non-motor functions (does not include muscle control) and includes things such as temperature (in)tolerance, visual disturbances, dysphagia (swallowing), dysarthria (speech), ataxia/vertigo, parasthesia, etc."

Thanks, George.

My strength of voice, heat intolerance, and overall fatigue level have already shown improvement (based on the above, I think these are 'cerebellar functions').  Other symptoms, like leg muscle strength and spasticity affecting my ability to walk will need more time and effort in order to improve.  At the time I underwent HSCT I had primary progressive MS, my EDSS score was 5.5 (0 - 10 scale), and I underwent the procedure 5 1/2 years after I was diagnosed.

We will see how much improvement I make.  Working hard for improvements will be required.

[DAY +39]  Started the day with some loops walked in the house followed by exercise:

(1) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(2) Marching - 2 x 10 per leg
(3) Lying on side bent legged adductor (crab exercise) - 2 x 10 per leg
(4) Lying on side straight legged adductor (leg raise) - 2 x 10 per leg
(5) Lying on stomach hamstring curl - 2 x 10per leg
(6) Seated on ball, lateral raise (no weights) - 2 x 10
(7) Seated on ball, row exercise using therapy bands - 2 x 10

While walking, I noticed that my leg muscles were very tight.  They loosened up a little bit by walking.  More walking and stretching is required.  Walking inside (since it's winter outside - not the best conditions for me and my Bambi-like walking ability) seems to be better for me than walking outside, because I do not use my walking stick inside and I can lean on a wall if I lose my balance.  This allows me to walk more 'freely' and take longer strides without fear of falling onto concrete or into the path of an oncoming car.  This loosens up my muscles some and is closer to the normal walking form.  I guess winter does have one good thing about it.

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Meds prescribed by my Hematologist, to supplement my immune system while it builds back up to full strength:
(1) Acyclovir (antiviral) 800mg - once daily
(2) Sulfatrim DS (antibacterial - combination of 2 antibiotics) 800/160mg - once daily on M/W/F

I can't say for certain, but based on the number of tablets and refills, I expect to be taking these meds for 9 months.