Three years ago, I flew home after HSCT at Pirogov Hospital in Moscow with high hopes and dreams. I still have high hopes and dreams but they are more realistic now. The struggle continues and I’m still fighting Primary Progressive Multiple Sclerosis. PPMS is an unrelenting bully, but I’m not giving up. I still experience overwhelming fatigue and I can’t walk very far without my legs giving out. My left hand is limp and mostly useless. I can’t help with household tasks unless my mind or organizational skills are needed. I joke that my mind is the only thing I have left, but it’s pretty much true. Life is so difficult, so extremely difficult. But, I’m still able to walk short distances, feed, bathe and dress myself. I don’t take anything for granted anymore. These could be the good old days I look back on. It’s hard to imagine, but it’s a reality I have to accept. I have dear friends who have continued to progress post HSCT and progression is sneaky and unrelenting. If and when I reach the next step in the progression of my disease, I’ll know I’ve done everything in my power to stop it. Right now, the worst thing that I can experience is stress. I do my best to stay calm & positive, and I don’t let small things bother me. However, stressful situations are sometimes forced upon us. My body reacts strongly and my walking deteriorates even further. My legs turn to jelly and won’t hold me up. I’ve always only wanted peace and hated conflict. Now I have a physical reason for wanting everyone around me to try their best to get along.
I had my last of 4 Rituximab infusions in February. It can take up to a year to know if my progression has stopped once again. Right now, I think it has stopped. I joined the HSCT Non-Responders Support group after my HSCT was initially successful, and then my disease started to progress. I’m hopeful that the combination of the extra Rituximab infusions and superior guidance from The MS Gym will be enough to stop my PPMS from progressing. Time will tell. The Non-Responders group is extremely supportive, but it is a sad group to need to join. It’s a group of people who have not responded to HSCT or have had their autoimmune disease progress after initially responding well to treatment. 20-25% of people treated with HSCT will benefit for a few years, before their disease begins to progress again. Some receive no initial benefit at all. Our group is eclectic and small. So far there are only 34 of us.
Somehow this summer, my right leg has been clearing stairs often and I can move my toes on both feet! It’s still surprising to me, but it has been fairly consistent. I’m not sure why. I exercise daily and I’m trying to correct both muscle imbalances and weakness. A friend told me about The MS Gym on Facebook. Trevor Wicken started The MS gym a few months ago and I joined when there were less than 300 members. Now it has over 3500 members! He is a talented and caring trainer from Denver, Colorado who has a lot of experience helping MS patients with various levels of disability, including those in wheelchairs. Trevor and his wife, Misty, are both extremely supportive and motivational. They’re filling a big void in the MS community. MS patients all over the world now have access to a knowledgeable trainer. If you know anyone with MS, please tell them to check out The MS Gym!
I made significant progress with my physical therapists when I was in Maryland. I practiced my balance and worked on improving my gait under their careful supervision. Much to my amazement, I successfully balanced and did mini squats on a Bosu. I moved from a cane to two trekking poles to help improve my thoracic rotation. I got to try an anti gravity treadmill a few times too.
I am back at the beach in Delaware this summer. For a few years, I’ve been saying this year could be my last. I’m looking into installing additional handrails, grab bars and maybe an elevator or a lift. I still use a beach wheelchair and push it to the beach. I also tried something new this year – trekking poles on the sand. Trekking poles on their own don’t have enough surface area for me. I had my son modify them by adding a piece of foam noodle to the tips. Success! It’s still very challenging, but it’s a good challenge.
modified trekking poles
Charlie was watching me :- )
Walking is more difficult as the sand gets softer.
It takes a lot of energy and concentration. BGB (butts, guts & blades) – The MS Gym
I purchased a beach wheelchair off of eBay last summer. I push it to the beach and back.
I practice walking with my trekking poles on the sand and exercise in an outdoor pool. My friends and neighbors at the beach are wonderfully supportive. I truly hope I can keep coming back to enjoy the ocean breeze and these special friendships.
I’m extremely grateful for my husband and son who help take care of me on a daily basis. God only knows where I’d be without them! Charlie, our sweet rescue pup, continues to delight us. Although he’s pretty much given up skateboarding, he’s learned to fetch and play with a ball! He’s the best therapy dog ever! I’m forever grateful to Dr. Denis Fedorenko, Anastasia Panchenko, & all the staff at Pirogov Hospital in Moscow for HSCT and for giving me hope. Unfortunately, HSCT is still not available in the US. Knowing what I know now, I would definitely do it again!
July 4th, 2014, I was getting preparing to go into isolation at Pirogov. July 4th this year, was spent celebrating with family, friends, neighbors & Charlie at the beach!
Today I was able to celebrate the 95th birthday of my next door neighbor, Muzzy!!! Last week, my great nephew, Arlo James, was born and I’m so excited to meet the little fellow! Congrats to his proud mamas, Annie & Hilary!!! I’m looking forward to more celebrations of life this year.
My last post was almost a year ago. It’s a whole lot easier to post positive, upbeat blog posts. It’s been a rough year, and I’ve done a lot of questioning throughout. Did HSCT halt my progression? Would additional treatments help?
When I started researching HSCT for PPMS, I connected with as many other PPMSers who had undergone HSCT as I could, but there were not many others who had gone before me. I was only the 45th international (non-Russian) patient treated in Moscow. At that time, only Moscow and Tel Aviv would treat primary progressive patients. The results for the PPMS patients were mixed, and it was still early in many of their recoveries. I made the decision to pursue HSCT and told my family and friends about my decision. I was thrilled that there was something I could finally do to try to alter the course of my disease.
Roughly two years later, PPMS patients can now be treated in Russia, Israel, Mexico and the Philippines. Russia has treated 255 international patients! The most exciting news is that there is also a PPMS patient currently being treated at Northwestern in Chicago, by Dr. Burt. I’m hoping she’s the first of many! Dr. Burt’s Phase III clinical trial, the final stage, will be competed this year. There will be a 5 year required patient follow up, ~1 year to write and publish a report for peer review, ~1 year to write an FDA submission, ~1 year of committee review. Hopefully by 2022 the FDA will finally recognize HSCT as an option for MS patients in the USA!
My first year post-HSCT was a practice in patience and I learned to expect the unexpected.
I had hope for a stable future, an end to my progression, and an increase in the quality of my life.
My second year was more difficult and I started to question if my progression had really been halted. I struggled with balance, walking, strength and overwhelming fatigue once again. Dr. Fedorenko sent out a post HSCT questionnaire in January 2016 which helped me clarify my concerns. In February 2016, I made the decision with Dr. Fedorenko’s help to pursue additional “booster” treatments to halt my progression.
The additional treatments to stop the progression are Rituximab infusions. Rituximab is a monoclonal antibody drug that is used to treat diseases with overactive or dysfunctional immune B-cells. It binds to the protein CD20 on the surface of B-cells, which helps other cells locate and eliminate the overactive B-cells. Rituximab was part of my initial treatment in Moscow. It’s not a big deal to get extra Rituximab infusions. However, it IS a big deal to convince insurance to pay for it. There are some insurance companies that will pay for it, but the process often involves a great deal of effort by the patient and their doctors.
I had my first “booster” Rituximab infusion last Thursday. Everything went well and I will have three more that will complete my HSCT consolidation therapy. I’m still hoping to definitively stop the progression of my disease.
I’ve been working with a new physical therapist for the past 3 months. As a neurological PT, she’s been able to explain to me a great deal about balance and gait that I never understood. She’s had me focus on exercises that all have practical applications for my movement. I had a little epiphany when I noticed that the way I was shifting my weight for a balance exercise mimicked the motion of a “normal” gait. She has me practicing walking with a Lite Gait, on a rubber mat with a cane, and around obstacles. I’ve learned how to safely use a cane for short distances and stairs. Yesterday, I walked 300 feet (less than 100 meters)with my cane! She also took the time to give me an exercise plan that breaks down what I should do each day. In the past, I’ve always felt frustrated that I was unable to complete all of the exercises that I thought I needed to accomplish daily. Now, I have a manageable plan.
PPMS is a horrible progressive disease can easily rob us of our dignity. My family members that live with me help me with daily activities, take care of 100’s of daily tasks that seem insignificant individually but add up to an enormous amount of time & effort and are my lifeline. I feel fortunate that my son, Adam, and my husband, Fred, are still available to help me. I continue to need their daily assistance.
I’ll be heading back to the beach soon. Every year, I wonder if it will be my last – if I’ll be able to continue using stairs and walking the 50 steps to the beach walkway. For those of you who have followed my HSCT journey, it’s important for me to reiterate that I have no regrets. I was incredibly fortunate to have received this treatment from the kind and devoted people working in Moscow’s Pirogov Hospital. I’m so grateful to have the support of other post-HSCTers around the world. We are a small group of individuals, but our numbers are growing.
I recently met a man with PPMS. He’s the only PPMSer I’ve met outside of Moscow – and he lives 15 minutes from my house! I hitched a ride with him and his lovely wife to my first informal MS gathering – a La Casa Internationale Del Pancakes.
Charlie is so smart and full of love. We are all grateful that this sweet pup is part of our family.
Charlie is so smart and full of love. We are all grateful that this sweet pup is part of our family.