January 9th, 2011
I. Introduction and Background
It has been 3 months since my stem cell treatment. For about a year before my treatment I had been searching on the internet for any application of stem cell research to humans and in particular ALS patients. All I could find were details of preliminary trials with rats but nothing about trials with humans. All this changed in the late summer of 2010 when I read about the work being done in Murcia, Spain. They were doing stem cell transplants on ALS patients, but I did not qualify as a candidate because of my age… I was 6months over the cut off date. Their work filled me with hope and led me to intensify my search for some other clinic doing similar work. Stem cell research and applications were definitely the new frontier in medicine though there was little application in ALS patients. I knew there were no guarantees and many felt that these experimental treatments with stem cells were bogus, but I had no other options and not a lot of time as I had taken a turn for the worse. Anyway, I have always felt that what we call impossible is simply what we haven’t seen yet. History is full of examples of impossible feats which later became successful and standard routines.
Formal diagnosis of ALS was given to me in September 2008 but detailed reconstructions of my symptoms by the doctor to whom I was referred for a second opinion built a time line going back one full year of ALS symptoms (cramps,falling, loss of fine motor function in my hand, loss of strength in my arms, difficulty climbing steps and getting up from chairs, etc) before final diagnosis. Multiple misdiagnoses led to a carpal tunnel operation and delay in ALS diagnosis.
So I had been living with ALS for three years when I applied for treatment. I have been extremely lucky in having relatively long periods of stability between periods of decline. I feel specially blessed that ALS has not affected my speech, breathing or eating.
II. FIRST TREATMENT
I was given an appointment immediately after I applied. I didn’t know exactly what my experience would be since the clinic was very clear that they had done relatively little work with ALS patients and could not yet show any real results. I felt like a pioneer… excited, hopeful, quite proud to be a ground breaker and willing to run the risks this entailed. I realized some of my loved ones and my own neurologist were a bit skeptical but they supported me nonetheless. My sons Francisco and Jorge were my #1 cheerleaders and unconditional supporters.
Saturday October 2, 2010.
By 3pm my sons had me ready for the airport. At 6pm Jorge and I left San Juan and arrived in Madrid 8 hours later. Unfortunately my bag did not arrive with us so our check in at the hotel was delayed. I was totally exhausted from the trip.
Monday October 4, 2010.
After breakfast at our beautiful Intercontinental Hotel we were picked up for the first time by our driver from the clinic. He was charming, efficient, helpful and always on time. The coordination with my appointments at the clinic was always perfect.
The drive to the clinic was through the center of the city, beautiful gardens and lovely residential districts so we arrived for our appointment in wonderful spirits.
Absolutely everyone at the clinic was caring, efficient and helpful. The clinic itself is modern, light and efficient in its design and furnishings. My son Jorge and I were impressed and reassured. Our subsequent interactions with doctors and supporting staff only intensified this first impression. We both felt we were at the right place at the right time.
On Monday we registered, paid, had an initial interview and all my blood work and then back to the hotel. I was still very tired from the trip and the day’s excursion to the clinic so I went straight to bed and Jorge went sight seeing.
Tuesday October 5, 2010.
Back to the clinic for the bone marrow collection. Everything I had read led me to believe this would be an uncomfortable procedure. Not true. For me it was quite painful. The doctor said she had successfully collected 20 tubes of bone marrow so it was worth it. No pain, no gain. And there were absolutely no after effects to the procedure. Back to the hotel to rest as I was very, very tired.
Wednesday October 6, 2010.
Today we were driven to the Diagnostic Center… everything was cutting edge technology. First there was a thorough physical examination and evaluation of what I could and could not do. Then came the MRI and the doctor’s evaluation and back to the hotel to rest from the exertion.
Thursday October 7, 2010.
The doctor gave me very good news. The harvested stem cells were processed and the solution he would inject contained more than 5,000,000 cells with 100% vitality. After local anesthesia the doctor implanted the solution via lumbar puncture. I felt a lot of uncomfortable pressure but no pain like in the bone marrow collection.
Then I lay flat on my back for an hour and a half and was told I could go back to the hotel. By the time I arrived I had a headache and general discomfort in my back and shoulders as well as in the lumbar region. I did not go out that night because I had been instructed to rest for 12 hours and the pain and nausea did not make it appealing anyway.
Friday October 8, 2010.
In bed all day… uncomfortable and tired.
Saturday October 9, 2010
Our wonderful driver picked us up at 9 am for transport to the airport. It seemed a very long wait till the plane departed at 12:10pm. After a 2 ½ hour flight we arrived at Madrid, had a 2 hour layover and then the 8 hour flight to San Juan. I was totally exhausted and uncomfortable the whole way. It was good to be home.
I felt weak and very, very tired for almost a week but then it was time to start my physical therapy.
III. PHYSICAL THERAPY ROUTINE
Started Aqua-aerobics on October 13thwith half an hour in the pool, very few routines and repetitions but I was on my way. My assistant practically carried me into and out of the water but once I was in I was totally free to move unassisted. What a wonderful feeling! Back at the house I spent the rest of the day in bed totally exhausted but with a feeling of great achievement. By evening I started to feel my muscles aching. I felt that was good news because it could only hurt if I had some muscles left.
In the next three weeks I gradually added more routines always balancing muscle sets. Then I gradually added more repetitions where I felt I could. Many years before I had completed certification as an aqua-aerobic instructor so I felt quite capable of designing my routines and tracking my body’s reactions.
After three weeks I added one more day at the pool.
Little by little I noticed I had more energy during my workout and that I was working most areas of my body. Back home I went from totally exhausted to very, very tired and then “just” very tired. My therapy was my full time job. On the days I did not go to the pool I did slow motion exercises with my arms and legs and some isometric exercises. I also moved around using my walker whenever I was not too tired.
In December I added a 5thsession in the pool and it felt very good. Then my assistants went on Christmas vacation and I was left with my home therapy. But I discovered that the rest was very good for me. Less muscle fatigue led to more activity. When my helpers returned at the end of the year I chose to do only three sessions at the pool and intensify my exercise at home on the remaining days.
My therapist suggested infrared heat treatment and I figured it couldn’t hurt. I started on December 21st2010. On alternate days I spend half an hour under an electric infrared blanket that covers me from neck to toe. I don’t have a clue what effect it has had, if any, but it is a soothing half hour. With her I also practice meditation and visualization. We also explore and handle anything that might be holding me back in my emotional and spiritual dimension as it all affects me physically.
My most effective therapy continues to be the love, support and daily care of my sons, the joy of my grandchildren’s visits and the regular phone calls and prayers from my friends and family. My biggest blessing is my optimism, determination and never ending faith that all is fine and will be fine no matter what is happening in me and around me. I derive enormous satisfaction and new levels of confidence from each positive change in my condition no matter how small it might seem. I choose to see setbacks as temporary pauses in my recovery.
IV. CHANGES SINCE MY TREATMENT IN OCTOBER 2010
It is 3 months since my stem cell treatment and I regret not keeping a detailed diary but I’ve been very busy with therapies and resting and it is very hard for me to write on the computer. I will do a synopsis as best I remember though the chronology of events might not be exact. Nothing really happened suddenly. Typically one day I would notice that I had been doing or feeling something for a few days and it would be an on again off again situation until it stabilized into something new. Some small things have made a big difference in my daily quality of life.
The most noticeable improvement has been that the sharp decline in my health has stopped. I guess I noticed this after about one month and my caregivers have commented on my new stability.
1. I started standing up straighter when I moved with my walker and no longer felt off balance and fearful of falling with every step. After a while I felt confident enough to lift my feet a bit when walking instead of just shuffling along.
2. I noticed new strength during my pool therapy because I could add more repetitions and afterwards instead of resting all afternoon and evening I would feel better after 3 or 4 hours. Again I point out that this new strength is very relative to what I felt before. I am very tired after every new exertion but I rest for as long as my body tells me. I do not push beyond my strengths.
3. I can now stand up by myself from my power chair which enables me to use it more often when I am by myself. Being able to stand up allows me to turn switches on and off, get up and go to the bathroom, open the door if someone knocks, move from my chair to my bed and spend time out in my balcony enjoying the view.
4. I am finding it easier to get out of bed. When I pull myself up by the hand rail I feel I am helping myself with my abdominal muscles and can stabilize myself on the floor more securely. I feel more strength in my legs. Again, some days are easier than others.
5. I had become unable to push the shower handle down after I had been bathed because my hand trembled with the effort. So I was pushing it shut with my hip. About a month ago I noticed I was using my hand to push it shut… slowly and with a lot of effort but I could do it.
6. Last month I stood up from my chair, held on to the railing on my front porch and willed myself to let go and trust my balance and the strength of my legs (of course my assistant was standing next to me just in case). Letting go was scary and it required great determination and courage but I did it. Then I took 7 or 8 solo steps… I couldn’t believe what I was doing. I have practiced this exercise on a regular basis since then. My granddaughter Christina calls these my toddler steps.
Knowing I have managed these solo steps has given me the confidence to take a couple of steps holding on with just one hand for balance in two situations which occur regularly. When I go to the bathroom I can hold on to the wall and/or the door handle for balance and take the 8-9 steps towards the toilet and again to return to my chair.
Also when I get in and out of the car I can haltingly take the 4-5 steps to and from my chair holding on to the car door. For me these are two great achievements that add to my quality of life.
7. When I travelled in my car I felt very uncomfortable not being able to open the door because it made me feel trapped and I hated bothering anyone about hurrying up to open my door. Every single time I tried opening the door even though I had no success. A couple of weeks ago I guess I placed my knee in the perfect place because I was able to push the door almost halfway open. I then finished opening it with a push of my foot. I am sure this is a result of my daily exercise routine which has strengthened my muscles. It feels so good to know that while my assistant is getting my power chair I can open the door slowly, swivel and let myself out. I can then stand leaning against my seat and then get up, take the couple of steps to my chair and sit down. I am of course exhausted by this mini routine but totally elated. I can now do this routine every single time.
*** There is an exception to what I have detailed above. My hands and arms continue to lose strength and fine motor ability and I have not yet seen any improvement. I need to be bathed, fed and dressed. I get more tired than before when using the computer and have more noticeable weakness when trying to press buttons in remote controls and phones, brushing my teeth or when trying to lift my arms. I can no longer write.
The fingers of my right hand are curled in, the index finger is rigid and I have very little control over my fingers.
But all things in good time. My ALS first manifested itself in my right hand and this was the hand which was unfortunately operated on for supposed carpal tunnel in 2008. On October 2009 I fell and fractured my right arm just below the shoulder. It seems logical that the part of my body most affected and for the longest time should also take a longer time to show improvement.
V. DIARY STARTING ON 4TH MONTH
I will make entries only when something different occurs.
Jan 11th…8pm While in the bathroom my left toe got caught in the rug, I lost my balance, twisted my ankle and fell to the floor. Luckily I was holding on to the door handle and was able to control the fall. Thank God no damage except the sprained ankle and a bump on my right knee. My sons arrived, picked me up and stayed with me until we were all reassured that I was ok.
This was my first fall in 3 months. I apparently dragged my foot instead of lifting it. I must consciously concentrate on lifting my feet.
Jan 13… Returned to the pool and felt fine.
Jan 18… I am feeling very weak and tired today. Don’t know if it is related to the fall but my left foot is still tender. Every day I thank God for my strong bones and commit to being prudent in all my endeavors.
Jan 21… Today I feel recovered from my fall. I used my walker again and felt confident. I had been doing my exercises all along but had felt uncertain on my feet.
Jan 23… Oops again. Today I put a memory foam pad on my bed and it was wonderfully comfortable. Unfortunately it added two inches to my already high bed and when I pulled myself up to get out of bed I slipped down and did not land on the floor in an upright position. I landed a bit too far from the bed and could not push myself upright. I was hanging on to my bedrail to avoid falling and was able to adjust my feet enough to prop myself up… but not enough to stand up. I phoned my son and he rushed over and just in time lifted me back on to the bed.
I was amazed I could hold on for so long… adrenaline is a wonderful thing. I honestly think I managed this because my legs are much stronger. I could not straighten myself up but I was able to shift my feet and lock my leg muscles to hold myself up at the same time that I hung on to the bedrail.
Not surprisingly the next day my body reacted to this ordeal with general muscle fatigue and pain my shoulder and knees. All week I rested more than usual but did not suspend my aqua-aerobics. I’m prudently observing when I can return to business as usual.