The Best is Yet to Come…

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The Best is Yet to Come…

Happy New Year!!

It’s been a little over 1.5 years since my stem cell transplant and about four months since my last blog update, so, I thought it was time to pop in with a status update from one of the earlier groups of international patients to have been treated in Moscow.   I’m happy to say that there are now 100s of patients currently scheduled to receive HSCT in Moscow.  In large part, the increase in numbers can be attributed to a 60 Minutes story that aired in March, 2014, in Australia, as well as the many veterans since who have blogged their HSCT experiences to the world.  If you think that it would be difficult for one person to make a difference, imagine my surprise when I received my 2014 blog stats from WordPress.  The graphic below indicates that in 2014 my blog was viewed by people from 97 different countries.  The U.S. was #1 on the list with Australia and Norway following the lead.

blog stats map 2014

 

My 2014 Checklist – In Pictures

Below is a pictorial of tasks that I was able to accomplish during 2014, many of which I would not have been able to complete pre-transplant, or, if I could have, it would not have been without a struggle.

My Recovery Status

–  Still walking without a trekking pole 98% of the time.  Only required for rugged terrain or longer walks.

–  Still walking without a foot brace since July, 2014.  I do not foresee having to wear one again…ever.

–  By the grace of God, I have never suffered from MS-related cognitive issues.  My cerebral clarity remains untouched!!

– I do retain a degree of spasticity in my right arm, hand, fingers and foot.  See pic of right-handed spasticity below. My right hand no longer naturally extends.

hand spasticity

 

–  I still retain lack of sensation in my fingers (one thumb still intact), toes, right ear and portions of my midriff.

–  Intermittently, I will experience the MS Hug (rib cage spasticity).  I may have it for an entire week and, then, not for two months.  I may have it for a day, then, not for a week.  It’s important not to wear a tight bra or clingy shirt, as it can trigger my Hug.

–  I continue to experience a degree of imbalance that also varies, however, nothing as bad as it was pre-transplant.  I attribute a large part of my ability to walk without assistance to the improvement in balance.

–  I do continue to suffer from coldness in my right arm/hand/fingers.  It is not a 24/7 situation, but, once it gets cold, it takes hours to get warm again.

– I no longer have shooting electrical shocks running through my eyes.

– My most nagging remaining symptom is foot drop, which has decreased significantly, but worsens as they day goes on or the longer I walk.  I do my best to rest in between walking to reserve my foot strength and function.

– My three MRIs that I have had since I returned from Moscow have all been completely stable.  No MS progression (Thank you, Dr. Fedorenko).

My Outlook

My outlook and attitude will always remain positive.  That’s just my style!  On average, an HSCT patient will realize the majority of their improvements within the first 2 years following transplant, however, improvement has also been evidenced at 3-5 years.  My case was thrown a bit of a twist when it was recommended (immediately prior to beginning my HSCT) that, based on my history of failing to respond to every MS drug/treatment that I tried (Betaseron, Copaxone, Gilenya, Tysabri, Solumedrol, Ampyra), I have one year of followup chemo after my transplant.  Given that, I’m kind of the “odd man out” in that I have no other Moscow HSCT patients, nor patients from other HSCT facilities who have been pre-emptively prescribed followup chemo.

So, what’s a girl to do?  I’ll tell you.  Recovery is hard work.  I plan to continue stretching and strengthening every single day and will most likely have to do that for the rest of my life.  Fair enough.  I will continue to move…no excuses.  I will accept whatever neurologic shortcomings I have been dealt, knowing the symptoms that remain will be all I will ever have (no more guessing what MS will take next…party over, MS!).  I will continue to update via this blog as I progress with my recovery and life.  I will gently step away from the HSCT spotlight to relentlessly pursue my dreams in whatever form they may come. I will remain forever grateful for the gift of HSCT.

As always, peace and love from the Pennsylvania countryside.

Brooke

11 responses »

  1. Hi Brooke,

    I love your spontaneity, love of life and detail right through your blog.
    I contacted you some time ago about the age of people you may know who have had the transplant. I appreciated the information you gave me at the time and I have been following you and others from here in Australia, who have returned from Russia.
    I am still a little anxious because I am 65years of age and have had MS for 33years now. Knowledge is power (or ignorance is bliss?) depending on your outlook, I think. I shall continue to investigate and be inspired by so many people.
    My very best wishes to you for your continued recovery throughout 2015.

    Hugs and happiness,
    Helen Dell

    • Time is flying by, Helen!! I would at least apply, somewhere. You have nothing to lose and everything to gain. You seem to be very upbeat. It makes a huge difference when dealing with MS. All my best to you.

    • The best is yet to come for you, too, Nancy!! You’re still very early in your recovery. It is definitely a long and rocky road, but it seems so much smoother when you’re no longer running a race with MS progression. I love your blog posts. Keep up the good work.

  2. I am like Helen Dell & was still alittle apprehensive about HSCT but have decided to a apply this week! I too am older (55) & have had MS for 20+ yrs. I 1st heard of HSCT through the video I saw of you & the 3 other ladies.. I have been observing & following the HSCT FB site & from that and your inspirational story I have finally decided to just do it! Now I wish I had of applied earlier! Thank you Brooke xo

  3. Dear Brooke, I read with much interest your journey; my son found your site online and became very excited about HSCT. My question is: HOW, WHERE, WHEN DOES HE APPLY? WHAT IS COST? He is 50 years old. Diagnosed about 6 years ago. They took two years to make diagnosis. He has tried just about everything there is to try. His younger female cousin has MS also. In fact, this town (Santa Maria, CA) seems to have a more than “fair share” of MS! Before I retired, one of my fellow workers had MS, then ten years later, her nephew found out he had MS (age 13 or so). There are several cases of MS in this town and I have to wonder why ………….
    In any event, Brooke, any info you are able to send us will be much appreciated. It can’t hurt to be educated about HSCT, right?
    My best to you. Thank you for being an inspiration to so many who suffer from MS.
    Natalie

  4. Natalie, there are HSCT facilities all over the world, but, each one has specific guidelines regarding which types of MS patients it treats. The most important questions are, what type of MS your son has (RRMS, PPMS, SPMS, etc.) and, where he is on the EDSS scale (level of mobility). If you don’t know, his EDSS, here is a link:

    http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/10-2-3-29-EDSS_Form.pdf

    Once you are able to answer those questions, then you can move forward by finding out which facilities will treat him. If you could provide me with that information, I will be able to share with you links to the appropriate facilities. Also, are you on Facebook? If so, I will be able to give you links to HSCT Groups that can be beneficial to the process of educating yourself about all HSCT facilites, as well as give you an opportunity to access blogs of veterans.

    I hope you have found this helpful. I will assist in any way I can. 🙂

    Brooke

  5. Pingback: 16. Day 45: Plus Some Comments on CIDP, MS, HIV and Other Bad Stuff | nemalinetreatment

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