One year from my New Life Birthday!

Summer is here! The weather is warm but life is still extremely challenging. I’m finally at the beach and so happy to be back! I stayed in Maryland longer than usual to successfully finish off my physical therapy.  My physical therapists were impressed with my progress. We’ve been working a lot on my brain-core connection. I’m improving much slower than I would like, but I am definitely stronger than I was before. I’m often asked if the treatment was successful. I believe my progression has stopped, which is the goal of HSCT. So, yes! It was successful; but unfortunately I started out with a high level of disability. That has not changed. I continue to struggle with my mobility, but my core is stronger and finally connecting with my brain! My therapists tell me my balance and dorsiflexion have improved and my movements are much more fluid. I have to continue exercising daily or one of my body parts feels left out. It’s a constant battle to do enough, but not too much. Too much knocks me out for a few days to a whole week. I’ve stopped pushing myself to exhaustion and I’m planning on starting poolates or my version of pilates in water.2015_07_02_23_16_11.pdf000

New Life Birthday card from my sister!

Today is the one year anniversary of my New Life Birthday in Moscow!  I’m so glad I was able to have HSCT when I did. The waiting lists continue to grow as more people with autoimmune diseases from all over the world learn about it.  There is a facility that has recently opened its doors to international patients. It’s in Puebla, Mexico. They’ve been treating patients for over 10 years, but the first group of international patients have recently come back home to their families! Moscow, Tel Aviv and Puebla all treat progressive MS patients. There are many more places that treat relapsing remitting multiple sclerosis. It’s really wonderful that PPMSers have more options available to them :- ) 

I wish I’d made more progress by now, but I’m glad that I’m not worse than I was a year ago. I still have time for further recovery.   I’m expecting more improvements during the next two years with continued physical therapy, exercise, good food and good mood! 

Sweet little Charlie has been a member of our family for 6 months and continues to be a devoted pup.  He’s come a long way from his early days and has stopped barking at every household noise. He’s always by my side and is a very good listener. He enjoys beach life, and many of the pups he encounters every day. 

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Charlie gets a kiss from his favorite snowball guy!

          Shopping at Home Depot                        

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Dancing for treats :- )

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15 Comments on “One year from my New Life Birthday!”

  1. Ben says:

    Hi Nancy very inspirational story of yours. Thanks so much for giving all of us with autoimmune disease. I am a CIDP patient diagnosed in 2015 Feb by Mayo. I mever got to a wheelchair bound hut got close to it.

    I tried ivig and it helped for a few months before I reached a plateau and then been taking steroids since April 2015. Started at 40mg and down now to 15 mg. I have improved but still cannot run, jump or fast walk and going up too many stairs can be tough. I know my neuro now wants to try me on immunosuppresants like cellcept but I refused for now. My next recent goal is hsct.

    My question to you is do I have to be pretty severe or wheelchair bound to be accepted as a patient in say Russia? How long was your wait? How do I apply for appointment? What kind of items for someone with my autoimmune disease would be considered? How did it work with payment? Credit card? No insurance coverage at all at least for some of the tests?

    I would appreciate the help. Thanks and bless

    Ben

    Like

    • Dear Ben, You don’t need to be in a wheelchair to apply. Apply as soon as possible. I know Moscow and Mexico both treat CIDP. I’m not sure what the acceptance criteria is for the HSCT trial at Northwestern in Chicago. My wait for Moscow wasn’t long at all. But the wait it is considerably longer now. The waiting list for Mexico should be much shorter. I paid by credit card, but I think they require a wire transfer now. Unfortunately, insurance will not help out of the US. Many people fundraise as I did. Follow this link to the general HSCT Facebook forum that provides contact information on all HSCT facilities around the world.

      https://www.facebook.com/groups/149103351840242/

      You will be able to connect with other CIPDers too. Let me know if I can help in any other way. Nancy

      >

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  2. Karen Roseman says:

    Thank you for sharing your journey Nancy, stay strong!

    Liked by 1 person

  3. Joan/Terry Rhoades says:

    Hey, Girl! happy to get the update…and so happy you are back at our happy place! THE BEACH!!!! I believe you will get better and better being there. You look BEAUTIFUL and you seemed so well and happier when we had lunch…inspiring is what you are…much love, Joan☺

    Liked by 1 person

    • Dearest Joan,
      It is a special place for sure. The sand, the smell and the air are so therapeutic. Have not gone in the ocean yet :- )
      Looking forward to your next visit. That was the first time I went out to eat since I went to Moscow!
      Nancy

      Like

  4. Andi says:

    Thanks for sharing, great to hear.Happy 4th.

    Liked by 1 person

  5. tom says:

    well done Nancy, I’m glad your doing well , Hatice is also doing great , take care
    Lots of Love
    Tom & Family

    Liked by 1 person

  6. Barbara G says:

    Glad you received my card!! Keep on keepin’ on…. Mom and I will talk to you tomorrow. Much love to you and all of your Moscow comrades.

    Liked by 1 person

  7. Aaron Grover says:

    Way to go, Nancy! Keep working and being positive, that’s all you can do. I am 8 months post, and my PPMS is about the same too. I also wish things were improving, and quickly, but I’ve read that is not typical. Do your best and see what happens. All the best to you.

    Liked by 1 person

    • Thanks for your encouragement, Aaron. I’m so glad we both had HSCT when we did. We would both have been so much worse off without it. Staying positive and strong is the key!
      xoxo
      Nancy

      Like


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