March 13, 2014

c2ad239ddcb4b7f0b59e838419df2260I’m starting this blog so that throughout my HSCT treatment I can share my experiences and help others learn about this treatment option for themselves and their loved ones. Two days ago my family started fundraising.  I have been overwhelmed by everyone’s love, generous support, and fundraising suggestions.  I am so grateful for the prayers, encouraging words, and donations!  I’m really feeling the love.  Thank you.
Photo is the storm before the calm : )

Unnecessary details about me:

I’m 58 and was diagnosed with Primary Progressive Multiple Sclerosis in 2008.
I live in Maryland with my husband, Fred.  We have 3 children.  Jonathan is 30, Dana is 27, and Adam is 23.  Dana and Gregory (also 27) married in October.

At first, PPMS was just a diagnosis.  I had numbness in my feet for many years.  I got concerned when the numbness starting climbing up my legs.  I had lots of MRI’s – lumbar, thoracic, cervical, brain- blood work and a spinal tap.  I’m sure there were more tests that I don’t recall.

How do I deal with having a disease with no treatment and no cure?

Adam, my youngest child, was a senior in high school and was just chosen to be Thernadier in his high school’s performance of Les Mis.  I was asked to take charge of organizing the other parents to supply food and drinks for the cast and crew for the rehearsals.  I remember thinking it was probably a great idea to help distract me from my recent diagnosis.  Dana was still in college at UD and Jonathan had graduated from UD.

Back in 2008, I was a happy gym rat.  I loved the gym, Severna Park Raquetball and Fitness Club, and my friends at the gym.  I enjoyed spinning, weight training, yoga and pilates.  My husband, Fred, was also a regular at the gym.

Slowly my walking and balance deteriorated and I was easily fatigued.  I had a difficult time spinning and usually could not make it through an entire class.  I was fatigued from the stairs before the class ever started.  I got a medical leave of absence from the gym and started to go to physical therapy to try to improve my muscle imbalances.  My walking difficulties continued, and I started to get severe muscle spasms in my calves.

I told family and close friends that I had Primary Progressive MS.  It was no secret if you saw me.  I walked like I had enjoyed a few glasses of wine.  But, people who saw me would always say, “You look great.”  I felt pretty good too.  My husband and I traveled to Israel in 2010.  We traveled to China in 2011.  My husband held my arm the whole time.  He said, “No one knows you have MS.  They just think we’re in love.”

January 2012, I tripped in my house.  We had a house full of guests.  I dislocated my right shoulder and I was in extreme pain.  My fingers and hand were numb.  The ER doctor tried a few times to relocate my shoulder, but was not successful because my muscles were in a spasm.  We had to wait for the orthopedist on call to come to my rescue.  He was in a great mood because he came directly from a winning Ravens game.  He was able to relocate the shoulder, but the numbness continued.  Usually, as soon as a shoulder is relocated, the numbness subsides.  However, if you have MS, your nerves are easier to damage.  My neurologist put me on gabapentin – which I did not like.  It made me feel tipsy and drowsy all day long.  I had hand therapy for a year and a half.  My hand functions now, but my fine motor skills and strength are still not what they used to be.

Now, my favorite part of the day is first thing in the morning when I get up.  I think about all the things I want to accomplish during the day.  I stretch, check emails and Facebook, and think about what I want to accomplish during the day.  It’s not until I actually get out of bed and start walking like a wobbly toddler that I realize I probably wont accomplish everything on my list.

I have been very blessed to learn about HSCT thanks to the magic of Facebook.  I had never met another person with PPMS, now I’m able to connect with people who deal with my same daily struggle.  I have been able to follow several other MS patients on their journeys before and after their HSCT in Moscow.  I have been encouraged by the increased quality of life other PPMSers experience after treatment.  Most have improvements in walking, strength and balance.  After learning about the 70 – 80% success rates of halting PPMS progression, I contacted Dr. Fedorenko in Moscow.  I had not heard about HSCT until mid January.  I did not know it had been used as a treatment for cancer since the 1960’s and for past 15 years for MS.

Please share my blog with family and friends in case they know someone who might benefit from this treatment.  Thank you again.


6 Comments on “March 13, 2014”

  1. Joyce Cooper-Kahn says:

    I am sending hope and energy via express vibe. Resupplies will be sent daily. I wish I could help give you a break from the daily struggle, but I guess that’s what the HCST is all about! I will follow your progress via your blog. I have already shared some of the information with my bookkeeper, whose 28 year old daughter was diagnosed with MS last year. Your blog will help others. Virtual hugs, Joyce


  2. Stevie Holt says:

    Dear Nancy,
    Our experiences and family are the same and reading your blog brought tears to my eyes. This is such a wretched and wicked disease that touches not only us but everyone that loves us.
    I will start writing my blog today although I could copy and paste yours, just swapping our names.
    Really look forward to meeting you in Russia. Love Steve xx


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