Thursday 12 February 2015


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

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

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Exercise

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

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

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

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

Feb 12:
Physio

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

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

5 comments:

  1. Hang in there Aaron! I'm right there with you, trying to remind myself that THIS is the time to be strong, physically, but more so mentally.

    You've been so good with your exercise regime, inspiring really. :)

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  2. Don't forget even a mild illness will set you back, but only temporarily. The mental part afterwards sounds like by far the hardest part. Stick with it, but also remember this is a marathon not a sprint! A bloody hard marathon to boot.

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  3. i remember this day in sulyok's economics class when les asked me a question and i hadn't done my homework. you slid over yours to save me, and when i answered him correctly, sulyok says, "see, grover? you work hard like digiacomo here and you just might get somewhere." you didn't even flinch. that moment for me will always be quintessential grover. the nonchalance, the reluctance in the limelight, the expectation of greatness, sure, but the hard work and dedication you always put in that looks so effortless to those around you. you make it all seem so easy, even if it took you hours or years of sacrifice to make it appear that way. secretly, you've always been one of the hardest working guys i know. ain't nothing different here, brother, "and you can bind that to your heart with a hoop of steel." stay at it, groves. you were made to handle this.

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  4. That's right on Rob DiGiacomo. That's how I remember you too Grover, even if I never mooched off your homework.

    I'd like to offer you a few sessions of energy work to help you back on your feet. My treatment room is in a wellness center in Walkerville. If you've never experienced energy work you can check out www.healswithenergy.com for a bit of info. Then get in touch with me and we can work out the details. Wishing only the best for you and your family.
    Steph John ☀️

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  5. Hi Aaron, so glad I stumbled upon your blog. I am at the initial stages of this journey, I hope to take. I know if I don't do something, I am heading for a wheelchair. I am 58, I was diagnosed with PPMS in 2010. I am still able to manage with two canes or a rolling walker.As the disease progresses I try to stay ahead of it. For instance, when I couldn't ride my bike any more two tears ago because of balance issues, I bought a tricycle.i am seeing my neurologist next week, I do not except his support. I will have to find another way to get the pre tests done. Did someone stay with you at the hotel? Prism2468@aol.com.

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