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.
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.
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.
Charlie gets a kiss from his favorite snowball guy!
Shopping at Home Depot
Dancing for treats :- )
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 : )
Lucy & Desi are at the beach with me and Adam. We love having them back. They are truly therapy dogs. They are SO much fun to have around and love the beach as much as we do! They are used to sleeping in my bed, but I’m following the ‘No dogs in the bed after HSCT’ rules. The pups have been fine with it much to my surprise. Lucy visits and leaves and Desi found a perfect spot under my bed to sleep.
Sweet Little Lucy knows she and Desi are an important part of my therapy!
I’ve been going to physical therapy for two months. My strength, balance and mobility have been improving. I had a major setback that was not related to the typical “roller coaster of recovery.” When I did standing hamstring curls for the first time post HSCT at PT, my calves and hamstrings went into a prolonged spasm for over two weeks. This made my foot drop worse and made walking much more challenging. It was a huge setback for me and I was really upset. My friends and family kept reminding me that I was still doing much better than before HSCT and I appreciated their honesty and encouragement. It’s difficult for me to stay positive all the time.
It gets better! I am 100% sure that the treatment was successful for me and confident that the progression of my PPMS has been halted!!! I was hesitant to make a public announcement until I was sure. There are so many things I can do now, that I have not been able to do for a long time. It makes me want to spread the word even more than before. Yes, HSCT works for young people with Relapsing Remitting MS, AND it also works for much older, much more disabled Primary Progressive MS patients!!! It is unfortunate that HSCT is only offered for PPMS patients in a few medically progressive countries. Thank goodness for Moscow and Israel!
I still walk mostly with a rollator, but have begun using a tru-motion cane when I feel up to it. I have even attempted walking on my own outside the house! A few weeks ago, there was a high tide from a huge storm that flattened out the sand. Even though my foot drop was problematic, I decided to see how I’d do walking on the sand without assistance. I walked with Desi on the leash and Lucy was having fun rolling in the sand behind me. Since then, I have started walking on the road in front of our house. The first time I walked unassisted on a hard surface was definitely more of a mental challenge than walking on the sand. In my mind, falling down on sand is a whole lot more forgiving than falling on gravel. I’ve NOT fallen since a month before I left for Moscow. As you can see in the video below, I wobbled from side to side on the sand and had to really concentrate on lifting my feet, but I did it!
There have been other positive changes as well. I used to not be able to stand for any length of time before HSCT. After a few minutes, I would need to sit and rest. Now, I have no problem standing for a half hour or more. I take a 20 minute walk most days. My stride has improved and I’m using less assistance, but I still get fatigued after about 20 minutes. On Saturday, I just used the cane and not the rollator for my walk. On Sunday, I tried walking with no assistance up and down my street. I didn’t want to be too far from my house in case I got too fatigued. I had to stay focused on the road in front of me and not turn my head to talk to my neighbors. I know they understood and were happy to see me trying something new : ) Today, I walked both pups. Previously, I’ve only done it with my rollator. I’ve started to use my spin bicycle too. I’m up to a half hour on the spin bike, but with very little resistance. I’m going for long slow duration (LSD) which should help improve my cardio.
These are videos of me walking today without assistance! I think it’s a much smoother walk than before. I take my recovery day by day. Tomorrow, I might need the rollator or the cane, but today was a good day : )
I really enjoyed my nieces wedding in New Jersey! One of my first questions for Dr. Fedorenko after he said I would definitely benefit from HSCT…Can I go a wedding in 3 months and NOT wear a mask? He told me that a mask was not necessary!!! I loved every minute of the whole weekend. I had not seen any of my relatives since I’d been home from Moscow. I also got to meet so many new people! Happy, Happy, Joy, Joy!!!
Michael Dote’s American Gothic photo of Hilary and Annie
Fred and his lovely bride
I’ll be at the beach in Delaware for another month or so. I’m staying until I run out of physical therapy visits. Then, I’ll rejoin my family in Maryland. As many of you know, my family moved while I was in Moscow. In my “Pollyanna” like mind, I thought my family would be able to handle the move, arranging the kitchen and furniture on their own. It was not the case. I went home for a few days to see what needed to be done and ended up staying for 15 days. There was LOTS to be done. I had help from many friends and even some family members. ***In case you have not heard of “Pollyanna”, it was a 1913 best selling book by Eleanor H. Porter about an unrealistically positive orphan. I read the book and saw the 1960’s Disney movie with Hayley Mills many times. For years, my son has heard me refer to people as Pollyannas but never understood the reference. He recently told me that NO ONE ever knows what I am referring to and have never heard of Pollyanna. Shocking indeed : )
Hayley Mills won an Oscar for her performance!
They even had it with Russian subtitles! Элинор Портер “Поллианна”
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.