[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.

[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.

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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

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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.

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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.

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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