July 2017 – 3 years post HSCTPosted: August 1, 2017
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.