Elephant Ride

This one is a little late, but about a week and a half ago five patients and their caretakers all went on an elephant ride :). We all piled into taxis, I think we had to take four to fit all the wheelchairs and everyone. My mom and I went in a car with another patient around my age and his dad as we were driving down the highway the driver suddenly pulled over to the edge of the road. Before we could say anything our driver started going in reverse on the highway into straight on traffic of motorcycles, rickshaws, and cars. On the side of the road were six elephants all lined up ready to go. We pulled into this itty bitty little driveway that could barely fit the car and got out. Somehow my mom and I got volunteered to go first so after everyone was out these guys started pointing at us telling us to "go go go." Next thing I know, I'm getting hoisted onto this elephant by five Indian men. I was still in shock that I was sitting on an elephant and that we were actually about to do this. My mom got on after me and I was told to hold onto the "Elephant man" who tells the elephant where to go. After tying us together my mom said she was ready to go. She had told me the elephant got up front feet first, then back. I think she forgot that because when the guy commanded the elephant to get up she screamed. Once the elephant was up we went along this trail and saw a couple little huts down in this super lush area. It was so pretty, I wish we had taken our camera out there instead of giving it to someone at the front to take our pictures. When we got back to where we had gotten on, the same five men helped me back off into my chair and we then waited for everyone else to go. I was definitely in shock the rest of the time that I had just ridden an elephant. After us a quadriplegic rode the elephant with a caretaker, which was amazing to watch how brave she was and trusting she was of everyone to do that. Then another person with Lyme induced ALS went with a caretaker. After he went the two mothers of them went and we got the funniest picture of their reaction as the elephant was rising. It sure was a fun day. I'm still kind of in shock that I actually rode an elephant in that sketchy of an area, but it was an experience that would probably only happen here in India.

HOPE

Hope is a wonderful thing. It pushes me forward to reach deep into my soul and find a purpose and new direction for the future. It is a guiding light and keeps me positive and optimistic. With hope your world is big; without hope it becomes very small. I always try to find hope in every situation. Therefore, it has made it possible for this journey to find healing for Monica. I ALWAYS knew that there was a person "out there in the world" that I HAD to find that could bring wellness to my daughter. I just knew deep to my core that if we found that right person it would all come together. That is why we spent every day "doctoring" pursing an answer. As you can tell from Monica's blogs our hopes and dreams are slowly becoming a reality. We came here hoping for one visible change.

So far in three weeks Monica has surpassed all of our expectations. Monica now sweats (I know how much we all hate to sweat and smell, but it is a critical function of our bodies and keeps us well) and she has not done this for about one and 1/2 years. Monica now sleeps an average of seven or eight hours per night (not jet lag, but real sleep) and has not done that for over 3 years. Monica now can stand up in physical therapy with calipers (metal braces) for a few minutes (but is very wobbily because her core and legs have atrophied) and has not stood for over seven months. Monica now can walk in physical therapy with calipers for a few minutes on the parallel bar ramp (yesterday she learned the moon walk) and again has not walked in over seven months. Her dismount is a crack up because she is in these full legged braces with several people helping her get back into her chair and then they take the calipers off. So you can see why HOPE makes all things possible. I also wear a couple of silver charms on a necklace that say: STRENGTH, LAUGH, FEAR LESS BREATHE MORE and HOPE.

Another reason for the title of this blog is that my brother's wife HOPE travelled with us to India to get us settled. Introducing Hope to the doctors and patients I always kinda joked that we are hopeful for the treatment and symbolically we even brought Hope with us. I am so fortunate that my brother married such an amazing woman! Before Monica got ill, I was lucky enough to work with the principal of my children's elementary school developing and implementing a character education program for each grade. I am always drawn to people by their character.

Hope has so many of the qualities and traits that form the individual nature I look for in a friend. She is responsible, patient, respectful, trustworthy, loyal, determined, optimistic, compassionate, dependable, adaptable, honest, has perseverance, displays gratitude and has a sense of peacefulness about her. She knew before I asked her to travel with us that it would be hard. Monica does not travel well - she has seizures, tremors and this time her hands froze into claws on the flight. Because of that I do not travel well and am so focused on making sure Monica is safe I get distracted easily. It was so comforting to know that she was a witness to our journey. It's amazing how much better I cope when I have a witness to my world and know that someone will be there if I fall. Getting supplies and just being a tourist is much easier with a third person. She made sure that I had all the comforts I needed before she left. I really wanted our room to be a cheerful, comfortable and welcoming room to be in. I wanted it to have a flavor of the country we now live in and make us feel like a "local" and not a visitor. We bought new towels and comforters and figured out how to decorate our walls. She helped me problem solve every situation to make sure that when she left we would be comfortable leaving our hospital and adventuring out in a wheelchair - honestly, as a visitor, the city looks like it has been bombed and they are rebuilding absolutely everything.

There is a slide show (that will be up soon) dedicated to her on the right hand side (future blogs will explain where we were and our experiences) and the sacrifices she made by staying with us and leaving her family (my nephews are six and ten years old). She really missed them, but stepped up and was present with us every moment. I am very grateful to have Hope in my life and as my friend. Thank you Hope for supporting us in this journey from the bottom of my heart.

One Step at a Time

One step at a time is what they all say. When Dr. Shroff heard that I stood up for the first time she wanted to jump right into the next step, walking. The morning of September 30th, 2009 I took my first step all by myself for the first time in 176 days. I was in metal and plastic braces that go about half way up my back for support because my legs are still too weak, but I did it all by myself. My physio, Jaya, was behind me making sure I wasn't going to fall, and Dr. Shroff was in front teaching me how to walk. She told me to put one hand forward, swing my hips opposite whatever hand I moved, and then pull my leg forward. Dr. Shroff dedicated about a half hour, no interruptions or anything, solely to get me to walk. If she wasn't there or wasn't willing to do that, I probably wouldn't have been able to walk for a couple more weeks. Everyone in the room was completely shocked that I was able to do it, I myself was even shocked. i can't put it into words how incredible it was to stand up straight and actually walk. A patient who was in the physio room when I happened to be walking, rolled over to me later and joked that I was going to be jogging up and down the streets in no time. Everyday since then that I've had physio we have been practicing and each day I seem to be getting better. Hopefully by the time I leave Nu Tech I will be walking without braces.



Sorry it has been so difficult to keep this blog updated, but starting tomorrow there should be a new post everyday. We have been so busy lately that we haven't had time to keep the blog up to date, but we will catch you up on everything that has happened.

Procedure!

Caudal Procedures... Not fun. The night before I did my first procedure the doctor casually told me while I was in a group of about fifteen people that I'd be doing a procedure tomorrow. I looked at him like "Wait, what EXPLAIN!" He told me that I would go upstairs for about 20 minutes get stem cell shots in my back then lay in bed for a couple hours. I had no idea what that meant exactly, but I knew to trust him so I said okay. Even though I'm numb I still want to know if something should hurt and if it should how painful should it be. Everyone was giving me different answers about it, saying well it hurts, but not that bad or along those lines. One person kept repeating over and over again that it was the most painful thing they have ever experienced. The rest of that night went fine, and I was supposed to start my procedure at 10 in the morning. I ended up going around 11:15ish. They hoisted me onto a table and the table was then lowered so my head was towards the ground, I felt like I was going to slide right off. Two nurses had to hold my legs down so I didn't slide around. The doctor then took a needle and went to the very bottom of my spinal cord and shoved the needle right on in. He then injected three doses of the stem cells in through that needle. It took about twenty minutes to do the whole thing, roll me in, get me on the bed, do the shots, and get me back off the bed and into my own room. I had to lay flat on my back and the elevator here isn't big enough to hold a stretcher so two men had to hold each end and carry me down the stairs that way. That was so scary I could have sworn I was starting to tip. They got me into my room and transferred me back in my bed. Then came the best part of all of it. They lifted the bottom of my bed up and stuck two bricks under each leg to keep me at an angle. Nobody really told me how long I was supposed to lay on my back for, but my nurse said five hours (others have said four.) I tried to rest for about an hour or two, but then I "woke up" and wanted to move and do something. I then watched old episodes of Melrose place for two hours, and after that got SUPER bored and restless. After finally being told I could move I got out of the room so fast and went down to the lobby to just hang out. The worst part of the Caudal Procedure was that I psyched myself out when they were giving me the injections all because I was imaging what that one person was saying about how it was the most painful thing. I was freaking out because the last thing I wanted was to suddenly feel the most pain ever, and I didn't stop to think about all of it. That one little thought wouldn't leave my mind and I was suddenly getting flashbacks of all the pain I have experienced and that is the last thing I would ever want, to have all that pain again. I've learned from that one experience that no matter how much pain it will take, I am going to do it to get myself well. I'd do anything to be healthy again so pain I guess isn't that much of a deal. I will never fully understand why I freaked out so much, but now I know.

Ruins Bring Good News?

We had been wandering around Haus Khaz Village for about an hour or so when we reached the end of a road and found some Ruins. They were built in 1354 and are so gorgeous. It's amazing how people are allowed to just wander and walk all over these ruins when back home everything would be fenced off and you wouldn't be allowed near really. There was this one wall that I transferred out of my chair to get onto to take pictures. The wall I was sitting on overlooked a man-made lake and you could see all of the ruins from where I was. It was right there, on September 18Th around 1 PM, we discovered something absolutely amazing. I sweat. We didn't quite know how to react, three or four little strips of sweat on my lower back. I thought I had sweat the day before, but we didn't know for sure because I took my shirt in with me when I showered and the shower goes EVERYWHERE in the bathroom so my mom, my aunt, and I just thought I got it wet from the shower. At those ruins it was confirmed, it was truly sweat. Since going numb I quit sweating, it's been a little over a year and a half that I last sweat and suddenly sitting on this wall overlooking these beautiful ruins we discover I've sweat. It's a moment I will never forget. The most ironic part of it though is, I absolutely hate sweat, I think it is the MOST disgusting thing ever and to think it's the first change I have is pretty funny to me. That change came on my third shot into treatment. As soon as we got back we ran into the doctor's office and told him and he was SOOOO happy. He looked me straight in the eye and said wow, it really is sweat. Then he went on to say they had NO IDEA what my first symptom to come back would be. He didn't really know what else to say. He truly believes this is the treatment, and you can tell he means it. This is it, from here you can only get better especially with your attitude and your support system he said. From talking to him I knew I was in for the ride of my life while being here, and I will survive and beat whatever has taken over my body. I will become me again, just from that one little thing everything made sense. Each day since then I've sweat a little bit more and in more places. Now a part of my face sweats, my chest sweats, and my back does :)

Monica's Health Last Week

Monica was a "normal," active, healthy girl before April 2006. Her only doctor appointments were for her checkups. During the past three and a half years Monica has seen over seventy-five doctors (Western and Alternative medicine) trying to diagnose or improve her condition. Her illness has been progressive and we have had very limited positive results with any treatments we have tried (temporary painful lower back feeling in Germany - doing the Bionic 880). A big part of the difficulty in treating her is that she is numb and does not have a feedback loop to tell us pain or improvements unless they are very obvious like regaining her vision or the ability to walk. We can only judge improvements based on lab results. Monica has received a diagnosis of Lyme with the co-infections of Bartonella, Babesia, Erlichia, Mycoplasma, and Sensory "Neuronopathy." However, no one has ever seen symptoms like hers before - Monica is completely numb from her head to her toes and cannot feel her muscles, bones, or internal organs. She has no sensation in her whole body: pressure, touch, temperature, or proprioception (where you are in space). Monica has to visually look at a body part to make it move. More than one doctor has stated, "No doctor will probably ever see a patient like this in their lifetime." Her condition is considered incurable and probably terminal based on her progression.

Current Discernible Symptoms

• Legs do not bear weight- cannot stand - in a wheelchair as of April
• Numbness - whole body inside and out - she has to see a body part to make it move. Progression started in February 2007 and ended in May 2008
• No taste
• No smell
• Vision is vertical in the left eye and blurry in both
• Loses hearing periodically throughout the day
• Cognitively: poor short term memory, unable to concentrate, difficulty thinking, difficulty reading (vision a factor), sequencing problems, disoriented sometimes, forgetfulness (cannot do school work)
• Does not sweat
• Muscle twitching / body tremors / seizures
• Insomnia - sleeps three or four hours
• Daily reflux - sometimes vomits
• Vocal sounds are weaker
• Goes to the bathroom on a schedule
• Eats and drinks on a schedule
• Feels detached / amputated from her body - her eyes are floating in space

Symptoms Monica displayed before going numb or losing ability to walk

• Pain: chest, ribs, migraines / headaches, right wrist, both knees, abdominal pain / spasms, lower back (all pain disappeared when she went numb)
• Right leg scissor gait
• Both knees hyper-extend
• Right foot drags
• Body temperature not regulating normally
• Balance off
• Hiccups turn into burps for 20 minute increments
• Gallbladder stones /sludge (antibiotic induced) - emergency room
• Constipation pain - emergency room
• Hips: Red stretch marks - currently white from Bartonella
• Leaky gut syndrome
• Nutritional deficiencies
• Toxic load: heavy metals, petrochemicals, food, water and medicine ingested
• What else . . . . . . . ?

Last visible change was when she lost her ability to walk in April.

In my next blog update I will let you know her amazing improvements already!

Ambulance Ride!

My first ambulance ride, and it sure was a crazy one. Two days after we got there I needed to do another test called a SPECT scan. We originally were going to take a taxi, but there was an emergency so they needed to push our appointment back until later that night, little did we know that would also mean going in an ambulance. From reading previous blogs and through talking to people we were told to put me in the front with a seat belt instead of on the stretcher. My mom was on the stretcher for the ride over and my Aunt was sitting next to here practically holding the wheelchair while I was in the front. The funniest part was I didn't even have a working seat belt in the front seat so it was kind of useless. In the states if you see an ambulance it's required by law I think to move to the right and let them pass, yeah that law doesn't apply here. We were treated just like a regular car is. About three or four doors up the street from the place I did my scan is just a community garbage dump, and the place we went to was nice. I waited about ten or twenty minutes for them to prepare the dye that was needed for the correct test results. It was a nuclear medicine that crosses the blood brain barrier to figure out how the blood flows through your brain. After the injection I was supposed to wait for about an hour to let the medicine flow through before they could start the test, I fell asleep within ten minutes of being put on the gurney. The test went by pretty fast and wasn't as loud as the MRI's, but I was pretty sleepy during the SPECT so I don't think I noticed as much. Once I was done, we got back into our ambulance and drove home. You could see the reflection in other cars and we could tell the siren light was on, but of course nobody moved or anything. The ride was pretty smooth, but it was such a different feel from ambulance rides (from what I've heard) in the states because nobody moves or anything for you. We got the results on Monday and they came back abnormal which my mom, my aunt, and I all celebrated about. Yeah I know that it's twisted, but we were very excited a test showed something is wrong with me.