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.
Happy New Year to all!
Yes, I know 2015 is well under way, but I’m still slow at most everything I do. However, I’m still moving forward. I got sick for the first time since HSCT. I had the flu a few weeks ago and have recovered from the illness, but my recovery from HSCT took a sharp nosedive. Although I know this kind of setback is not unusual after an illness, it is still very discouraging. So many others have gotten sick, been hospitalized, fallen or had other setbacks after HSCT – I’ve considered myself very lucky. I also had not fallen since April, and was pretty damn proud of that too. I fell while I was sick, but it wasn’t a “bad” fall. I’m lucky I did not get hurt. Collapsing in a heap on the floor is much easier on the body than taking the full brunt of a fall. My strength, ability to walk unassisted and my balance suddenly disappeared. I had no idea how long it would take to start regaining some of what I had lost. So many fears crossed my mind. What if I haven’t been doing enough? What if I’ve been doing too much? What if my old symptoms improve, but I get new symptoms? My mind was going all over the place with ‘what ifs.’ These thoughts are also not unusual for any post HSCT patients. I just try to keep reminding myself – Full recovery can take up to two years!
It’s been an incredibly rough week, but a few days ago I started to feel a bit stronger. I took a 10 minute walk in the snow in our backyard. I had an arm to hold onto the whole time and I lifted my legs as high as I could. It felt wonderful and exhilarating – until it didn’t. I have terrible, old snow boots and those boots were not made for walking. I still had a good feeling about pushing myself a bit and tonight I was able to walk on my own again! I’m slowly getting back what I lost. Thank you Sari and Adam for your unending support and encouragement!
I’m expecting to be back on track gaining strength, increasing my mobility, balance and working hard with my dedicated physical therapists and occupational therapist. Thank you to all the love and inspiration from our large and always growing post HSCT family.
Soon we will be visiting my sister, Marian, and my brother-in-law, Robert, in the Poconos. I’m excited to see them and have them see how I’ve progressed. We were supposed to go visit a few weeks ago, but that’s when I got sick. They both accompanied me to Moscow and stayed a few days while I underwent the testing and was accepted for HSCT treatment by Dr. Fedorenko. They were really happy to have met Dr. Fedorenko, Anastasia and the other patients. Then they flew home and went back to their family and jobs. They returned to Moscow a few days before my departure to help me safely get back home. I’ve only seen them once since then, and that was that their daughters wedding.
Yesterday, I had an MRI of my brain, cervical and thoracic spine with and without gadolinium. I was delighted to hear that I have no new lesions and my previous lesions had not changed at all. My MRI was compared to the MRI I had in Moscow and the last MRI I had before Moscow. I will share the report from my radiologist with Dr. Fedorenko as soon as I get a copy!
Other exciting news is our adoption of Charlie. We got him the end of December. He’d been found running on a highway in October and had been ‘on his own’ for a long time.
He was brought to our local animal control, cleaned up and groomed. He stayed with the family who found him for 4 months and they brought him back. We read about him and went to animal control to see him. We arrived just as he was leaving in the arms of one of the volunteers. He was so frightened, he was shaking. We met him the following day and decided we wanted to adopt him. We visited him again with our other rescue pups, Lucy and Desi. Desi likes everyone, but Lucy is definitely picky about who she likes. Charlie growled at both of them while wagging his tail. Lucy and Desi both liked him anyway. He’s been with us for almost two months and he is so sweet and smart. He’s gotten over a lot of his fears. We’ve been training him and he’s doing really well. He still growls at Lucy and Desi, but it’s definitely less. He loves to run in the backyard with Desi! This is Charlie now.
Learning to shake!
His first trip shopping.
Charlie’s first photo shoot!
We all adore him and are forever grateful to everyone who has helped Charlie along the way.
It’s been five months since my stem cell transplant, my HSCT birthday and the beginning of my new life. I’m amazed at the variety of changes that I’ve experienced. When deciding to go for HSCT, we are often reminded that our goal must be to stop the progression of our disease. Any improvement is a bonus. Well, we are all hoping for that sweet bonus.
I’m still hovering at about $80% of what I was hoping to raise for my treatment and related expenses.
I recently got 3 more donations and I want to thank everyone again for their support.
I’m happy to report some improvements due to HSCT since my last update. I walked up a sandy slope without assistance or holding onto anything (except a dog leash!) I walked up three flights of stairs without holding on to the bannister. I usually hold on for balance or actually use my arms to pull myself up. I’ve been able to walk up stairs without using the bannister a bunch of times, but I can’t do it every day. I’m still excited that I could do it at all! My foot drop is less pronounced than before as well. It was always the main cause of my trips and falls. I’ve not fallen since before I left for Moscow! Before HSCT, I was not able turn my head and change the direction I was facing, or pivot from my hips without holding on to something or someone. It might seem insignificant to most of you, but it has made a difference in my daily life. I’m trying to use the rollator less inside the house. I use it if I’m feeling wobbly or if I have to transport something from one place to another. I’ve just completed a 30 day core workout challenge through Custom Strength Physical Fitness in Ottawa, Ontario on Facebook and learned a few new core exercises that I’ve never tried before.
I also helped a friend get the information he needs to apply for HSCT. I’m thrilled that I was able to help him. Unfortunately, he does not qualify for Dr. Burt’s clinical trial in the US. His latest MRI has no new lesions. To qualify for the clinical trial, you must have new lesions. Is it crazy that we were both hoping he would have new lesions!?!? Anyway, I wish him the best and hope he gets accepted somewhere soon.
I was the 45th international patient to be treated in Moscow for HSCT by Dr. Fedorenko. By now, there must be close to 100 international patients that have been treated. Patients who get accepted are now given treatment dates in 2017. There are hospitals in other countries with much shorter waiting lists. Please contact me if you or a loved one has an autoimmune disease and are interested in getting more information about HSCT.
There have been many amazing improvements in walking, hiking, jogging and jumping in patients that have had HSCT. We can not compare our improvements with others. We all start out with various levels of disability and all recover differently. But, it sure is encouraging to see the before and after videos!
There have been a few bumps in the road of my HSCT recovery. I do best when my surroundings are clean and tidy. As some of you know, my family moved to a much smaller home while I was in Moscow. I’ve been there only a few times to help clean and get it organized. It was important to my recovery and mental health to be in a comfortable and clean environment when I came back from Moscow. The ocean air and beautiful breeze was also a major factor in my decision to start my recovery and PT at the beach. Getting the ‘new’ home clean and ready for me to be comfortable to live in has been a challenge for me. My husband, who had a heart attack last year after Thanksgiving, was having more symptoms recently. He needed two more stents inserted for his heart to work efficiently. I’m was home for his hospitalizations and for Thanksgiving with my family. He’s doing really well now and I’m back in Bethany to continue my physical therapy. I’ll be moving ‘home’ for good soon. I’m struggling to quickly get the house in reasonable shape so I can concentrate on my recovery and not excess clutter that needs to be donated! Clutter causes me stress and I’m trying to minimize stress and maximize my ability to heal. Lucy and Desi continue to be wonderful loving companions that always brighten my day. Tomorrow I’m going to finally meet Brenda Lou!!! She had HSCT in Chicago over a year ago and she’s at the beach visiting with a friend : )
One of the last warm and sunny days on the beach.
Sari found this treasure!
My new favorite of Lucy. She was looking for a new friend : )
Desi on look out!
I was delighted to meet Brenda Lou at her friend’s home in Fenwick!!!
She had HSCT 14 months ago for CIPD in Chicago : )
I officially started my therapy. I’ll be going twice a week for one & a half hour of hand therapy with an occupational therapist and one & a half hour with a physical therapist back to back. I was really fatigued after my first two appointments. The first time it took me two days to recover. It was such a long day for me. I didn’t get to take a walk around my neighborhood or go to the beach or the pool. I could barely move. My second session knocked me out too! But after a few hours of just resting and deleting old emails, I went to the pool with Adam. Exercising in the pool seems to rejuvenate me while I’m in the water. I can only walk for 10 to 15 minutes now and my legs feel heavy the whole time. That is half of what I had been doing prior to starting therapy : (
Recovery is much more difficult than anything I’ve experienced before. I am hopeful that I will get a bit stronger in a few weeks and be able to walk for a longer period of time.
This photo is of me with Trish and Heather. This was the first time we were all together this summer!
This photo was taken the same day. My dear friend Jeff from high school joined us on the beach!
Adam took this picture of my alien head from the back : )
On a much more positive note, Sari and Jonathan were with us this past weekend. I’ve not seen Sari for one month. She said she can see improvements in my walking…even if it’s not apparent to me : )
EBD&G= everyone but Dana and Greg
I’ve been home from Moscow for four weeks. Although I’m not overflowing with energy, I haven’t had severe fatigue. I’ve been told that approximately one month after coming home the steroids would totally be out of my body. I should expect to be really exhausted and may not may not be able to make it out of bed for a few days. I keep waiting but it hasn’t happened yet. Mornings are harder for me, but once I’ve been up for a while and stretch, I’m able to move better.
I’m also prepared to expect a roller coaster ride for my recovery. My old MS symptoms can leave and come back again. It is unpredictable, and there’s nothing that I can do to change this. I need to make sure I get plenty of rest and stay as stress-free as possible. It is definitely easier said than done, but I’m doing my best. So far, I’ve been less fatigued and I’m walking better (not good, but better) than before the treatment. But the spasticity (tight, tight muscles) is back in my calves, and stretching doesn’t have an effect on it.
Since my immune system is still not very strong, my whole family is taking infection control very seriously. We have a bottle of Purell at the bottom of the entrance stairs and at the top of the stairs. Everyone who comes uses it. I wash my hands frequently, carry hand sanitizer with me everywhere I go and wipe down the kitchen counters with Clorox wipes often.
The biggest change involves my husband. Fred loves fruit. He especially loves serving it to other people. He is famous for bringing a huge bowl of cut up watermelon, no rind, to the beach and serving his family, friends, renters and people he’s not yet met his delicious watermelon. At home, he also likes to serve fruit in very large bowls. In the past, he encouraged everyone to use their fingers or toothpicks to get the fruit. He’s been serving fruit like this for many years. This year, he’s using smaller bowls and serving the fruit with plates and forks. I explained that I need to be very careful right now with everything I eat and touch.
This weekend, I saw Lucy and Desi (and Dana & Greg) for the first time since I left for Moscow! I was careful after touching the pups too : )
I’ve not gone out to eat at a restaurant since returning home. We typically don’t go out often.
When my friends Harriet and Joan visited, we had take out from Matts Fish Camp. It’s a wonderful restaurant in my neighborhood! I only wear a mask when I go out to a public place. Although I’m allowed to go out to eat at a restaurant, I can’t imagine wearing a mask and lifting it up to take bites of food. Continuing to enjoy Fred’s delicious home-cooked meals is my preference. I’ve also eaten at friends homes a few times and that was wonderful!
A few Sundays ago, my neighbors had a special surprise event at the beach for me. It had been raining for a few days and this was a beautiful clear night. There were 100 luminaries that were lit and sent up into the sky. It was a huge gathering of love and support with friends from my neighborhood. It was a magical night and everyone who was there loved it.
I want to thank everyone again who planned, contributed and came out to enjoy the evening with me, my family and friends!
Miles, one of my neighbors took most of these photos that captured the spirit of the evening.
It’s still mind boggling that the cost for the Stage 3 HSCT clinical trial at Northwestern is well over 3 times the cost of HSCT in Moscow. While I was not eligible for Northwestern’s clinical trial, I’m still glad that many people do qualify and are able to get treated in the US.
We are still fundraising to pay for the cost of my HSCT in Moscow. I’m trying to stay positive even though we have not reached our goal yet. I am grateful for all the contributions I’ve received so far. Thank you all for your support and prayers.
I was glad I practiced walking up over two flights of stairs on my last day in the hospital. It gave me confidence that it would not be a problem when I got home. We have a lot of stairs at home and I was really ecstatic that stairs were not a problem for me. I do hold onto the railing and I am not speedy!!!
I started walking outside the day after I arrived home as per Dr. Fedorenko’s suggestion. I walked slowly, but walked for a half hour in my neighborhood and my legs did not complain. Before HSCT, I had not gone for a walk for over 4 years. I walked where I had to walk. After 10 minutes, my legs would get heavy and I would get fatigued. This was a major change that was obvious to my family and close friends. Rehab won’t start until I’m home for a month, so any improvements that are noticeable now are pretty exciting for me.
These photos were actually taken the 2nd day I was walking. I decided after my walk that I would peek at the beach. I was not ready to walk on the sand yet. This is the view from the top of the walkway to the beach. I was happy just to see the water!
It was a windy day, & my hat looked very silly.
But, I was lucky to see my neighbors, Karen, Miles and Mallory heading home from the beach!
My son, Jonathan, knew I really enjoy the beach and sitting in a circle with my friends and neighbors. I call it a circle of love.
He made me a ‘beach wheelchair’ from old riding lawn mower parts and added a seat from a car. I was expecting PVC pipes, not heavy steel. Jonathan has a creative mechanical engineering mind and added things he thought were important. The cooler had it’s own spot and could be used to elevate my legs and of course, carry beer : )
Jonathan surprised me with his visit and with his beach wheelchair. It was not at all what I was expecting!
I was pushed, by Adam (on the left) and pulled by Jonathan (on the right) through the sand and although I held on really tight, I loved it!
Sari, Jonathan’s girlfriend visited me 3x during the first two weeks I was back from Moscow. Once she came with Jonathan, and twice she came by herself. She is always incredibly helpful when she comes and she knows I appreciate all her efforts!!!
I was expecting to have great difficulty walking on the sand. I thought I would need a strong man on both sides of me.
I was so surprised that I was able to walk better on the sand than last year. I still need an arm for balance, but my feet are able to lift higher and clear the sand much easier. I am not sure if my walking will regress if I get extremely fatigued. But for now, I do not need the festive beach wheelchair!
Adam and I were heading out to my next door neighbor’s for dinner and the Boarman/Priesters + Lucy were passing by.
I’m always so happy to see Katie, Lucy, Anne, Jane and Charlie!
An unexpected visit from Tom, Scott and Kamran, who rode their bicycles to come and see me : )
Michele and Susan took my daily walk with me and were impressed with the bottle tree. We have great soil for growing bottles in Bethany : )
A quick photo before they all headed back home to Maryland.
Another surprise visit! Eva said she would stop by, but did not mention she was bringing Annie, Niki and Sue!
I am so glad that I chose beautiful Bethany Beach for my place to recover and heal.
I love all my beach neighbors and my visitors!!! Let me know if you are in the area, I’d love to see you : )