[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.
------------------
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
Monday 29 December 2014
Sunday 28 December 2014
[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.
--------------
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.
(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.
--------------
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.
Saturday 27 December 2014
[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
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
Friday 26 December 2014
[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.
--------------------
*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
(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.
--------------------
*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
Tuesday 23 December 2014
[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.
(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.
Monday 22 December 2014
[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.
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.
Saturday 20 December 2014
[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.
----------------
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.
(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.
----------------
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.
Friday 19 December 2014
[DAY +38] This morning I did physio exercises. Not as many as Wednesday, but it was still challenging, and I was tired afterwards.
Exercises:
(1) Lying on side bent legged adductor (crab exercise) - 4 x 5 per leg
(2) Lying on side straight legged adductor (leg raise) - 4 x 5 per leg
(3) Lying on stomach hamstring curl - 4 x 5 per leg
(4) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(5) Marching - 2 x 10 per leg
(6) Seated on ball, row exercise using therapy bands - 2 x 10
-------------------------
In the afternoon I saw a Haematologist. He said:
(1) Blood counts are good, and moving in the right direction. Do another blood test today before you leave, and do one next time you come here to see me in one month
(2) I will provide you with a new prescription for Acyclovir & Septrin. No need to take allergy (Telfast) & stomach protection (Losec) meds anymore, since you are not bothered by either. (I will pick up the meds tomorrow and record the doses here)
(3) Go ahead and start taking supplements
(4) Go home when you feel physically strong enough. If somebody in the house gets sick, just be smart, stay away and don't kiss them
Very nice man, I will see him again in a month.
Exercises:
(1) Lying on side bent legged adductor (crab exercise) - 4 x 5 per leg
(2) Lying on side straight legged adductor (leg raise) - 4 x 5 per leg
(3) Lying on stomach hamstring curl - 4 x 5 per leg
(4) Standing on one foot (while holding onto chair) write numbers with other foot - 2 x 10 per leg
(5) Marching - 2 x 10 per leg
(6) Seated on ball, row exercise using therapy bands - 2 x 10
-------------------------
In the afternoon I saw a Haematologist. He said:
(1) Blood counts are good, and moving in the right direction. Do another blood test today before you leave, and do one next time you come here to see me in one month
(2) I will provide you with a new prescription for Acyclovir & Septrin. No need to take allergy (Telfast) & stomach protection (Losec) meds anymore, since you are not bothered by either. (I will pick up the meds tomorrow and record the doses here)
(3) Go ahead and start taking supplements
(4) Go home when you feel physically strong enough. If somebody in the house gets sick, just be smart, stay away and don't kiss them
Very nice man, I will see him again in a month.
Thursday 18 December 2014
[DAY +37] Today my muscles were sore, but I woke up wanting more. (It felt great to have sore muscles from exercise - it has been a long time.) I pushed myself just right yesterday. I guessed that if I pushed myself physically today, it probably would not be beneficial at all. So I did what I am best at: eat and rest.
Tomorrow I will get back on the horse, but slowly. I will do a few exercises, and see where that takes me. And tomorrow I will see a Hematologist. Things I will ask :
(1) Need prescriptions for the anti-viral, anti-fungal, stomach protection, and allergy pills I am taking
(2) Is it ok if I start taking Vitamin D, Omega-3, and EPO supplements starting immediately?
(3) Any additional blood testing required? Opinion of previous blood test results?
(4) When is the best time for me to move back home to Oshawa? Precautions I should take if anybody in the house gets sick?
Tomorrow I will get back on the horse, but slowly. I will do a few exercises, and see where that takes me. And tomorrow I will see a Hematologist. Things I will ask :
(1) Need prescriptions for the anti-viral, anti-fungal, stomach protection, and allergy pills I am taking
(2) Is it ok if I start taking Vitamin D, Omega-3, and EPO supplements starting immediately?
(3) Any additional blood testing required? Opinion of previous blood test results?
(4) When is the best time for me to move back home to Oshawa? Precautions I should take if anybody in the house gets sick?
Wednesday 17 December 2014
[DAY +35, +36] Yesterday I got back to walking on the street and doing lunges. One of the reasons for that was that I thought doing so would make the following come true, "I will hit the ground running during physio tomorrow!". Nope. Not even close. After physio today I am lucky I didn't hit the ground with my face. I was exhausted. My legs were shaking. Did I push myself too far? Not enough? Just right? My gut feel is that I pushed myself just right, because today was my first physio session, and I haven't done anything exercise related for a few years. I should be worn out from it. We will find out for sure tomorrow. If I can't move, then it was probably too much.
------------------
Yesterday's exercise:
(1) walked to street corner and back
(2) 7 x 10 lunges
Today's exercise:
(1)Various physio exercises
-----------------
Saw my Doctor today. My blood counts (some of them: white blood cells = 4.0, haemoglobin = 12.7) are still low, but they are moving in the right direction. I am pleased with that. My next blood test is in 2 weeks (unless Hematologist wants something sooner), and I am hopeful it will produce more positive results. I have my initial appointment with a Hematologist on Friday. We will see how that goes.
Monday 15 December 2014
[DAY +33, +34] Yesterday was another day of rest and stretching for me. The rest did my muscles good, perfect timing for me first physio session today.
My physio person came to the house this morning. I did a balance test (Berg Balance Scale), we talked about the physical issues I am looking to improve, and at the end we discussed my plan going forward. My balance is decent - test score indicates I do not need walking assistance - but there is room for improvement, and there will be improvement. He will come on Monday and Wednesday to help me complete the balance exercises correctly. Also, he will email me an exercise, strengthening, and stretching plan that I can complete myself, as often as I can without hurting myself. I will purchase a stability ball and some light weights since I will need them for my exercise program.
Based on my balance test results, I am starting from a good spot - my balance is good enough currently that improvement is likely. As long as I work hard. One of the most difficult parts of the test for me was standing with one foot directly in front of the other - toes of one foot touching the heels of the other - for 30 seconds. The most I could do was 5 seconds.
----------------------
I did a comprehensive blood test this morning. Should get the results later in the week. Or, I may not get any results at all, since my doctor said, "If you don't here from me, then everything is as expected.".
My physio person came to the house this morning. I did a balance test (Berg Balance Scale), we talked about the physical issues I am looking to improve, and at the end we discussed my plan going forward. My balance is decent - test score indicates I do not need walking assistance - but there is room for improvement, and there will be improvement. He will come on Monday and Wednesday to help me complete the balance exercises correctly. Also, he will email me an exercise, strengthening, and stretching plan that I can complete myself, as often as I can without hurting myself. I will purchase a stability ball and some light weights since I will need them for my exercise program.
Based on my balance test results, I am starting from a good spot - my balance is good enough currently that improvement is likely. As long as I work hard. One of the most difficult parts of the test for me was standing with one foot directly in front of the other - toes of one foot touching the heels of the other - for 30 seconds. The most I could do was 5 seconds.
----------------------
I did a comprehensive blood test this morning. Should get the results later in the week. Or, I may not get any results at all, since my doctor said, "If you don't here from me, then everything is as expected.".
Saturday 13 December 2014
[DAY +32] Today my body gave me a giant middle finger, which I interpreted as it telling me "slow down, take it easy, I'm tired.". My leg muscles were tired, almost ached, and I could feel it. So today, I rested. I have decided that I will do less total exercise tomorrow, but do it more intensely, more slowly. We'll see how that goes.
Other than that, I am still feeling pretty good. I am eating what I want, when I want, and loving it. I am not overly tired. My muscles do tire quickly and I am still fairly weak - both effects of HSCT according to Dr Nadir.
Other than that, I am still feeling pretty good. I am eating what I want, when I want, and loving it. I am not overly tired. My muscles do tire quickly and I am still fairly weak - both effects of HSCT according to Dr Nadir.
Friday 12 December 2014
[DAY +31] The last words from Anne this morning were "Buy a LottoMax ticket, the jackpot is big.". Actually those are the words from a previous conversation we had. Today's last words were "Push yourself.". Good idea. So I did.
---------------
Today's exercise:
(1) Marching 3 x 8 each leg. Before I sit at the tablet eat a meal, I 'march' behind the chair - alternately lifting each leg as high as I can. Lifting my left leg causes my right leg to 'lock out', because it is weak and has difficulty supporting my weight, but it will get stronger.
(2) 8 x 10 lunges per leg (4 in a.m., 4 in p.m)
(3) 6 x 7 pushups (knees on the ground) (3 in a.m., 3 in p.m.)
---------------
Today's exercise:
(1) Marching 3 x 8 each leg. Before I sit at the tablet eat a meal, I 'march' behind the chair - alternately lifting each leg as high as I can. Lifting my left leg causes my right leg to 'lock out', because it is weak and has difficulty supporting my weight, but it will get stronger.
(2) 8 x 10 lunges per leg (4 in a.m., 4 in p.m)
(3) 6 x 7 pushups (knees on the ground) (3 in a.m., 3 in p.m.)
Thursday 11 December 2014
[DAY +30] One month ago (Nov 11) was my Day 0. A big thank you to all those who have helped me get to where am today - there are hundreds. It is almost unbelievable that HSCT is already 1 month in the past.
Another immediate improvement which I forgot to mention is my strength of voice and speaking ability. Before HSCT, after a few minutes of talking to somebody, my ability to speak would go downhill fast. At this point, a lot of effort was required to speak, so in my mind I was cheering for the conversation to end so that I could rest. My voice would become soft, slow, weak, and sometimes I would start to slur words. I likened it to speaking like a drunk. I would attempt to make my sentences as short as possible, because I knew that the more words I spoke, the more difficult it was going to be. I am happy to say that this is not a problem for me anymore. My voice just feels stronger, and I definitely have more 'speaking endurance'. So if we are talking in the future, and I rudely cut the conversation short, you can be confident that it is because I am being an ass, and has nothing to do with my health.
----------------------
Today's exercise:
(1) 6 x 10 lunges (3 in a.m, 3 in p.m.)
(2) 6 x 5 pushups (knees on ground)
It snowed a lot today, so I decided that it would be best if I didn't walk outside. Yet.
Another immediate improvement which I forgot to mention is my strength of voice and speaking ability. Before HSCT, after a few minutes of talking to somebody, my ability to speak would go downhill fast. At this point, a lot of effort was required to speak, so in my mind I was cheering for the conversation to end so that I could rest. My voice would become soft, slow, weak, and sometimes I would start to slur words. I likened it to speaking like a drunk. I would attempt to make my sentences as short as possible, because I knew that the more words I spoke, the more difficult it was going to be. I am happy to say that this is not a problem for me anymore. My voice just feels stronger, and I definitely have more 'speaking endurance'. So if we are talking in the future, and I rudely cut the conversation short, you can be confident that it is because I am being an ass, and has nothing to do with my health.
----------------------
Today's exercise:
(1) 6 x 10 lunges (3 in a.m, 3 in p.m.)
(2) 6 x 5 pushups (knees on ground)
It snowed a lot today, so I decided that it would be best if I didn't walk outside. Yet.
Wednesday 10 December 2014
[DAY +29] Today I did a little bit more exercise then yesterday. I also went for a walk outside - boy was it cold - that made me yearn for the t-shirt weather of Tel Aviv. I continue to eat like a glutton, and am enjoying every minute of it.
Anne's friend Laura took the time to prepare me a personalized physiotherapy program. Thanks Laura! It was tough.
Today's exercise:
(1) Did a portion of Laura's physio program
(2) Walked to the street corner and back
(3) 6 x 10 lunges per leg (3 in a.m., 3 in p.m.)
(4) 6 x 5 pushups (knees on the ground)
Anne's friend Laura took the time to prepare me a personalized physiotherapy program. Thanks Laura! It was tough.
Today's exercise:
(1) Did a portion of Laura's physio program
(2) Walked to the street corner and back
(3) 6 x 10 lunges per leg (3 in a.m., 3 in p.m.)
(4) 6 x 5 pushups (knees on the ground)
Tuesday 9 December 2014
[DAY +28] Sadly for me, all the pomegranate seeds are gone. I have eaten them all, all 12 large pomegranates, and they were delicious!
I have been asked more than once if undergoing HSCT for my MS was worth it. It's very soon after HSCT, but I can already say that yes, it was definitely worth it. Here's why:
(1) My fatigue level is reduced. By a lot. Especially during/after eating.
(2) After the procedure I walked/exercised outside in the warm Tel Aviv air. I used to melt like butter in warm temperatures - I would be begging for the nearest air conditioned room with a couch. Exercise, or any activity that caused my body to heat up, made things worse.
(3) My legs used to be a real nuisance. I like to say they were very "loud". It felt like they were on fire, and it was very uncomfortable. That is not the case anymore. There is still some discomfort, but there is much less. I am sure the majority of my remaining leg issues are a result of the damage done to the myelin on my spinal cord due to MS. This damage may or may not be repaired, but with me having completed HSCT, it is unlikely to get worse.
(4) I am able to lift my feet up each stair as I walk up. That used to be very difficult, almost impossible - there was a lot of dragging and stumbling. I walk up the stairs very slowly, but the ability to do so properly is priceless.
My legs are definitely weak, and I will not be entering a walking contest anytime soon, but I knew going into this that there would be a lot of work/ physical therapy required after HSCT. The only regret I have is that I did not undergo HSCT sooner. But I am still very happy I that was able to get it done - regardless of timing.
The next year is likely to be full of ups and down when it comes to me and my ability. But that is okay with me, and it is way better than just downs.
--------------------
Today's Exercise:
(1) Walked to street corner and back. Then walked a few houses in the other direction (all with walking stick).
(2) 4 x 10 lunges (each leg)
(3) 4 x 5 pushups (knees on ground)
I have been asked more than once if undergoing HSCT for my MS was worth it. It's very soon after HSCT, but I can already say that yes, it was definitely worth it. Here's why:
(1) My fatigue level is reduced. By a lot. Especially during/after eating.
(2) After the procedure I walked/exercised outside in the warm Tel Aviv air. I used to melt like butter in warm temperatures - I would be begging for the nearest air conditioned room with a couch. Exercise, or any activity that caused my body to heat up, made things worse.
(3) My legs used to be a real nuisance. I like to say they were very "loud". It felt like they were on fire, and it was very uncomfortable. That is not the case anymore. There is still some discomfort, but there is much less. I am sure the majority of my remaining leg issues are a result of the damage done to the myelin on my spinal cord due to MS. This damage may or may not be repaired, but with me having completed HSCT, it is unlikely to get worse.
(4) I am able to lift my feet up each stair as I walk up. That used to be very difficult, almost impossible - there was a lot of dragging and stumbling. I walk up the stairs very slowly, but the ability to do so properly is priceless.
My legs are definitely weak, and I will not be entering a walking contest anytime soon, but I knew going into this that there would be a lot of work/ physical therapy required after HSCT. The only regret I have is that I did not undergo HSCT sooner. But I am still very happy I that was able to get it done - regardless of timing.
The next year is likely to be full of ups and down when it comes to me and my ability. But that is okay with me, and it is way better than just downs.
--------------------
Today's Exercise:
(1) Walked to street corner and back. Then walked a few houses in the other direction (all with walking stick).
(2) 4 x 10 lunges (each leg)
(3) 4 x 5 pushups (knees on ground)
Monday 8 December 2014
[DAY+27] The usual EER today - Eat, Exercise, Rest. I got outside and walked to the street corner and back today with my cane (hiking 'stick'). I lifted my feet most of the way, some dragging occurred right as I finished. I will chalk that up to fatigue. It will get better.
I continue to eat like a king. Will weigh myself in the coming days.
Today's exercise:
(1) 4 x 10 lunges (per leg)
(2) 4 x 5 pushups (knees on ground)
(3) Walked to street corner and back
I continue to eat like a king. Will weigh myself in the coming days.
Today's exercise:
(1) 4 x 10 lunges (per leg)
(2) 4 x 5 pushups (knees on ground)
(3) Walked to street corner and back
Sunday 7 December 2014
[DAY +26] Another day of eating, resting, and some exercise. Anne suggested I add an upper body exercise to the mix, since my exercise focus thus far has been solely lower body. I had second thoughts about doing this, thinking my upper body had escaped any weakness effects from HSCT, so it was plenty strong. I was wrong, Anne was right. Those pushups were very difficult, so I will keep doing them.
Exercise today:
(1) Walked 4 loops inside the house (1 loop = front-to-back-to-front)
(2) 4 x 10 lunges (each leg)
(3) 2 x 5 pushups (with knees on the ground)
Exercise today:
(1) Walked 4 loops inside the house (1 loop = front-to-back-to-front)
(2) 4 x 10 lunges (each leg)
(3) 2 x 5 pushups (with knees on the ground)
Saturday 6 December 2014
[DAY +25] Today was filled with eating, resting, and a little bit of exercise. I couldn't find a good spot to do wall squats, so I did lunges instead. They are much more difficult for me than wall squats, so I will continue to do them.
A couple of positive things I have noticed:
(1) Eating used make me very tired. So much so, that I stopped eating big meals and hot items like soup. That is not the case anymore.
(2) Lying flat on my back and lifting my legs up one at a time used to be impossible. Not anymore.
(3) I am awake in the evenings, and effort to stay awake is not required.
It's early, but these are very promising things.
-----------------
Today's exercise:
(1) 4 x 10 lunges - each leg (2 in a.m., 2 in p.m.)
A couple of positive things I have noticed:
(1) Eating used make me very tired. So much so, that I stopped eating big meals and hot items like soup. That is not the case anymore.
(2) Lying flat on my back and lifting my legs up one at a time used to be impossible. Not anymore.
(3) I am awake in the evenings, and effort to stay awake is not required.
It's early, but these are very promising things.
-----------------
Today's exercise:
(1) 4 x 10 lunges - each leg (2 in a.m., 2 in p.m.)
Friday 5 December 2014
[DAY+24] My first full day home started at my Doctor's office. He read my CTCI discharge letter and blood test info, I gave him the contact info for the Hematologist referral, and before I left he told me that for any fever 38.0C or above, I must immediately report to an urgent care centre or hospital. I also asked his thoughts about me living back at home with Anne, Elaina, & Aly by late January / early February. He said by that time my immune system will be stronger, and cold/flu season will be winding down, and therefore doing so would be fine. Great stuff.
Next, Dad and I went to my house where Anne and Baba left lots of treasures in the garage (pomegranates, lasagne, groceries, clothes, and plenty more). We could not go inside because Aly is sick with a throat infection, but we got to see them through the upstairs window. The stunned looked on Aly's face was priceless. I felt a bit sad not to be able to go inside and see her in person, but just seeing Aly's face and waving hand through the window made me very happy, and easily crushed any feelings of sadness.
Then we came back here to Dad's place and I ate like it was my last meal ever. And then I slept. And then I ate again.
Next, Dad and I went to my house where Anne and Baba left lots of treasures in the garage (pomegranates, lasagne, groceries, clothes, and plenty more). We could not go inside because Aly is sick with a throat infection, but we got to see them through the upstairs window. The stunned looked on Aly's face was priceless. I felt a bit sad not to be able to go inside and see her in person, but just seeing Aly's face and waving hand through the window made me very happy, and easily crushed any feelings of sadness.
Then we came back here to Dad's place and I ate like it was my last meal ever. And then I slept. And then I ate again.
Thursday 4 December 2014
[DAY +23] Made it back to Toronto. Not as warm here as Tel Aviv, but I am very glad to be back. Tomorrow I will see my family physician, have him refer me to a specialist for follow-up care, and get back to doing exercise. I will be staying at my Dad's in Toronto for a little bit, until I am strong enough to go home and not be a burden. When I see the specialist, I will ask his opinion on how best to protect myself from getting sick when Elaina or Aly or Anne get sick, and what I should do if I get sick.
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Just finished a bowl of iced cream. Every bit as delicious as I thought it would be.
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Just finished a bowl of iced cream. Every bit as delicious as I thought it would be.
Wednesday 3 December 2014
[DAY +22] I cannot say enough good things about the quality of care I received while I was here. Thank you Nurses Samira, Ashraf, Hussein, Ibrahim, Sami, Mohammed; Dr Nadir, Prof Slavin, and anybody else on the CTCI medical team that I may have forgotten. And thank you Ruth Grunbaum, CTCI's patient co-ordinator, who answered all the questions I had before coming here, and completed all the necessary paperwork to get me here. And, of course, thank you to my personal caregivers Dad & Diana - they are the unsung heroes of this trip. I cannot emphasize enough that when you undergo HSCT treatment here, a personal caregiver is very necessary.
-------------------
I received one last Neupogen shot today to boost my white blood cell count (1) for the flight home and (2) to help protect against any environmental hazards that are prevalent in Toronto, but not in Tel Aviv. Total Neupogen shots I received is 7. As recommended by Dr Nadir, I will wear mask on the flight home.
The duration of my stay here is Israel was exactly 5 weeks.
-------------------
Awaiting me at home are the delicious seeds of 12 pomegranates - 3 hours of manual labour. Thanks Baba!
-------------------
I received one last Neupogen shot today to boost my white blood cell count (1) for the flight home and (2) to help protect against any environmental hazards that are prevalent in Toronto, but not in Tel Aviv. Total Neupogen shots I received is 7. As recommended by Dr Nadir, I will wear mask on the flight home.
The duration of my stay here is Israel was exactly 5 weeks.
-------------------
Awaiting me at home are the delicious seeds of 12 pomegranates - 3 hours of manual labour. Thanks Baba!
Tuesday 2 December 2014
[DAY +21] "I do not have any concerns. You are free to go.", said Dr Nadir today. It was nice to hear those words. When I saw Prof Slavin, I thanked him, then he smiled and replied, "We are just doing our job.".
The next direct flight from Tel Aviv to Toronto is Thursday, December 4th. Dad has called Air Canada, and has made the necessary changes, and we are now booked on that flight. Tomorrow, we will go up to the clinic to get a supply of meds, some paperwork, and say thank you & goodbye to whoever is there.
Upon my return to Canada, follow up care by a Doctor who is comfortable and knowledgeable in dealing with bone marrow transplant patients is very important. My neurologist at the St.Michael's Hospital MS clinic also stressed this point when I saw him this past September. I will make sure this happens.
-----------------
i have read a lot about HSCT recently. My understanding is that i will feel good and bad for the next year (it will be a roller coaster). After one year, my immune system should be at, or very near, full strength. Also after one year, the good/bad roller coaster will likely switch to only good, and upward I will go. This upward trend will likely include some symptomatic improvements. But without regular exercise / physiotherapy, all bets are off. And, of course, as somebody once said, "In medicine, there are no guarantees, only probabilities.".
------------------
*Update*
Today's exercise:
9 loops walked outside (5 in a.m., 4 in p.m.)
6 x 10 wall squats (3 in a.m., 3 in p.m.)
------------------
It's that time of year:
Aly's comment after taking the picture, "I like Santa.".
The next direct flight from Tel Aviv to Toronto is Thursday, December 4th. Dad has called Air Canada, and has made the necessary changes, and we are now booked on that flight. Tomorrow, we will go up to the clinic to get a supply of meds, some paperwork, and say thank you & goodbye to whoever is there.
Upon my return to Canada, follow up care by a Doctor who is comfortable and knowledgeable in dealing with bone marrow transplant patients is very important. My neurologist at the St.Michael's Hospital MS clinic also stressed this point when I saw him this past September. I will make sure this happens.
-----------------
i have read a lot about HSCT recently. My understanding is that i will feel good and bad for the next year (it will be a roller coaster). After one year, my immune system should be at, or very near, full strength. Also after one year, the good/bad roller coaster will likely switch to only good, and upward I will go. This upward trend will likely include some symptomatic improvements. But without regular exercise / physiotherapy, all bets are off. And, of course, as somebody once said, "In medicine, there are no guarantees, only probabilities.".
------------------
*Update*
Today's exercise:
9 loops walked outside (5 in a.m., 4 in p.m.)
6 x 10 wall squats (3 in a.m., 3 in p.m.)
------------------
It's that time of year:
Aly's comment after taking the picture, "I like Santa.".
Monday 1 December 2014
[DAY +20] Legs are a bit tired today from the exercise, but that is a good thing, and very necessary. Other than that, I am feeling alright. Must be the weather. It's 22C (72F) and sunny outside today. Hard to believe it's December 1st when I can walk outside in a t-shirt and be very comfortable. Tomorrow's forecast: 26C (79F) and sunny. I have had nothing but positive experiences here, but when I get the green light to go home, the only thing I am going to miss about Israel is the weather. It has been glorious throughout my stay.
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Morning exercise complete:
(1) 5 loops walked outside
(2) 3 x 10 wall squats
-------------------
Evening exercise:
(1) 4 loops walked outside
(2) 3 x 10 wall squats
------------------
Elaina & Aly went to the movies yesterday with some friends:
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Morning exercise complete:
(1) 5 loops walked outside
(2) 3 x 10 wall squats
-------------------
Evening exercise:
(1) 4 loops walked outside
(2) 3 x 10 wall squats
------------------
Elaina & Aly went to the movies yesterday with some friends:
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