2 Years Post HSCT for PPMS – Sept. 4, 2015

A little late, but here is my 2 year post HSCT update.

Just to recap, I’m PPMS, my EDSS had recently transitioned to 6 before HSCT, I’d say it’s now a 5. I was diagnosed with PPMS, May, 2012 and was admitted to the hospital in Moscow on August 19, 2013, it was my 47th Birthday. Treatment went very smoothly, and I returned home on September 25, 2013.

Year 2, post HSCT, has definitely been much better than year 1, considering my chemo joint pain finally ended, after 14 months, and has not returned. I feel very strong, and keep pushing myself to see what additional improvements I might have. I know “they” say that what you have a 2 years, is what you get, but I tend to try and prove “them” wrong. Shoot, many say that HSCT won’t work for PPMS, I proved that wrong. So, I’ll keep pushing the envelope and see what else I can do.

Physical fitness is still my main push, I workout almost every day. I work with a trainer in a semi-private class M/W/F. It’s a high intensity, fast paced, training session and I have to try and keep up with someone who doesn’t have PPMS, but I hold my own. Some modification have to be made on a few of the moves, like I can’t jump, and I’m not as strong as others, but I’m moving. This isn’t what you normally see a trainer in a gym do, no benches, or machines involved. This is a timed workout, and you go from exercise to exercise, with only 10 second breaks. It is a total body workout, and every exercise involves the core.  We use resistance bands, TRX, dumb bells, kettle bells, and our own body weight. This has really helped my balance.

Also I enjoy cycling, I ride a hybrid mountain bike, and ride one day during the weekend, and have added a Tuesday morning ride, with the other lady in my training class. I usually ride 15-17 miles, and I have a goal of 20 miles by the end of 2015. Last year my goal was 10 miles by the end of 2014, so to be able to double that would be amazing. Getting off the bike, after my ride, isn’t pretty or graceful. I have my riding partner go ahead of me and to be there on standby if I need help. I ride up to the back of my SUV, lean on the hatch back and physically have to lift my leg over the bike bar, and it’s a women’s bike, so not a high lift. My legs are totally spent for the rest of the day, and walking is more stubbly, but I recover. It used to take me several days to recover, now usually okay after a day.

Just finished up a ride. Summer 2015.

Just finished up a ride. Summer 2015.

Walking has seemed to have maxed out at 2.25 miles (3.62 km), that’s with hills. I’d love for that to improve, but it doesn’t seem to be happening. Even though I no longer use a trekking pole for my daily activities, I use two trekking poles when I do long walks, no way I’d be able to do that distance without them. Before HSCT .25 miles was pushing it, so this is a big improvement.

Here are my symptoms and how they are now.

I’d like to add, I think my symptoms listed below pretty much are the same as at the one year point, but that’s fine, they’ve not gotten worse, unless I’m really stressed, tired, or have overdone it. 

COGNITIVE:  “Chemo brain” is real, and finally seems to have cleared up. I’m still not as sharp mentally as I’d like, it is better than when I had chemo brain.  I still wright everything down, keep reminders in my phone, and keep a detailed calendar of what I am to do each day, but I am working on this. Hopefully with some memory training I can improve this too.

FATIGUE:  I still need a nap mid day to recharge. Usually an hour does it, and I’m good to go the rest of the day, but some days, like on days where I’ve gone on a bike ride, I may sleep up to 2 hours. To me this is a very annoying. I hate when people tell me they’d love to take a nap every day. I don’t nap because I want to, I nap because I have to, to function the second part of the day.

BLADDER URGENCY:  This has greatly improved, since before HSCT, but the same as a year ago.

SPASTICITY:  This has greatly improved, since before HSCT, but the same as post one year.  My legs are really stiff in the mornings, and I stretch to get moving. I still have spasticity at night, or when I’ve had to sit a long time, it can still be very painful. Usually a couple of Formula 303 do the job. (magnesium, valerian root natural supplement) I take 2 around 6-7 pm nightly.  I’ve tried Baclofen, but I hate the way it makes me feel the next day, and since it has to build up in your system you have to take it daily for it to be effective. I recently had my Neuro prescribe Valium, it works great on the nights that the Formula 303 isn’t enough. It was also great for our recent trip to France, I don’t think I could have been comfortable on the long flight without it.

LEG WEAKNESS:  They are still weak, and feel heavy, even with all the exercises I do, but they are better than before HSCT. It still feels as though I have ankle weights on, all the time.  So jumping, or running aren’t in my future. My calves, and hamstrings seemed to be improving more than my quads, so I’m still working on them to see if they will gain more strength.  When I’m tired, or have done a lot, they are much worse. I still use my trekking pole if I’m going on a long walk, traveling, or just having weaker leg day.

TOE DROP:  Greatly improved, since before HSCT. I’m no longer wearing through the toes of my shoes. I still can’t wear flip flops, sandals, or many “cute” shoes, but I’m walking.  My gait has really improved, from before HSCT. When I’m tired, had a long walk or bike ride, it comes back, so I have to be very careful not to trip.

SWALLOWING:  Totally improved after HSCT.  I’d gotten where I could choke on almost anything. This doesn’t seem to be an issue at all anymore.

SPEECH:  I really didn’t notice this symptom too much before HSCT, but I don’t consider it a new symptom, just one that didn’t bother me as much as all the others.  I do have a slight hesitation in my speech at times, and it can me much worse when I’m tired.

COLD INTOLERANCE:  This was one of the first symptoms I noticed improvement after HSCT.  I’d say it’s almost totally gone.  It does take longer to warm up my muscles when it’s cold, but at least I can walk. Before I could barely walk when it was even chilly. Moving from Florida to Arkansas just before HSCT, this was a huge concern of mine. Last December I met my goal of riding 10 miles on my bike before the end of the year, it was 41 degrees Fahrenheit (5 Celsius). This would have been impossible before HSCT, my legs wouldn’t have moved.

Just as a side note: 

Traveling is something we love to do, and before HSCT I thought traveling abroad would no longer be an option. Well, we just returned from a wonderful vacation in France, and I was amazed what I was able to do.  (NOTE: I do use my trekking pole when I travel)

Mont Saint-Michel France

Mont Saint Michel – France

Had to climb these steps to get to the view.

Had to climb these steps to get to the view.

Now enjoying the view.

Now enjoying the view.

 

Dune of Pilat - France

Dune of Pilat – France I had to walk up these steps to get to the top for the view.

Made it!!

Made it!!

Now walking down in the sand.

Now walking down in the sand.

I’ll keep pushing and hopefully I’ll experience additional improvements, but if this is as good as it gets, it’s more than I ever expected. I’m so much better than I was before HSCT.  I now focus on reducing stress, exercise, and eating a very healthy diet. Oh… and living life to the fullest.

Thank you Dr. Fedorenko and your wonderful staff, you gave me hope when no one else would.

VW

15 Comments (+add yours?)

  1. HSCTWARRIOR
    Sep 17, 2015 @ 11:56:27

    So great to hear, so encouraging, so honest.can’t wait to be a HSCT warrior.

    Reply

  2. judisjourney
    Sep 17, 2015 @ 17:33:05

    Vicki, I am so happy for you and for your husband that you’ve reclaimed your life.

    Reply

  3. Erika grant
    Sep 17, 2015 @ 21:02:12

    You are my inspiration, thank you!!

    Reply

  4. Roger
    Sep 21, 2015 @ 19:32:21

    Fantastic Vicki!!! So happy to hear of the amazing progress! What a
    warrior and inspiration! What a feeling to beat back your symptoms!
    This will be a great script for others to follow!
    Love from Roger & Diane in Amarillo

    Reply

  5. Synøve
    Sep 22, 2015 @ 07:13:57

    Reading your store I was almost crying, very touching and I feel there is hope for my husband, he has PPMS. He is promising coming to Moscow in 2017.

    Reply

  6. Ayse Ali
    Nov 16, 2015 @ 01:22:47

    Hi Vicki

    Great hear about your journey. I didn’t have anybody to compare my self with after my hsct treatment in Singapore. It’s now been 7 months since my treatment. I’m currently doing physio and Pilates weekly to build up strength in my legs.
    Can I ask you Vicki how you where at 7 months.
    If you can reply would greatly be appreciated.

    Regards

    Ayse

    Reply

  7. Ayse
    Nov 18, 2015 @ 17:52:00

    Thank you for your repling to my email Vicky. It has reassured me so much.

    Many thanks

    Ayse

    😊

    Reply

  8. Jim
    Nov 23, 2015 @ 11:41:31

    Hi Vicki – I also have PPMS and am interested in the HSCT treatement – which protocols was used on you – the myeloablative or non-myeloablative? thanks

    Reply

  9. Tania
    Jul 10, 2016 @ 11:14:38

    It’s great to read your encouraging news and to feel hope! By th way, I found your post showing your walking pre-treatment and now I cannot find it. Please help!

    Reply

  10. Caroline
    Aug 01, 2016 @ 11:55:50

    Really inspired by your story and your courage. Am hoping to have HSCT in the UK soon for RRMS, and you’ve given me hope! Thank you.

    Reply

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