Saturday, October 31, 2009

Green Park

We live in an area called Green Park. It is such a small area compared to the rest of Delhi. It takes us about 20 minutes to get to the heart of the city from the hospital depending upon the time of day with traffic. I have really liked living in Green Park. The hospital is on a very busy street but you have access to a shopping area (two blocks long with stores on just one side) that is about a five minute walk. You can walk to Deer Park which is again about ten minutes from here. This park is quiet (the first place I could actually hear birds chirping), green with plants and trees - no grass, and has a fenced in section of deer - they look like bambi with white dots, but many have antlers with their velvet still on. You can also walk to another area about ten minutes away that has a quaint feel to it with cobble stones and then end up at some spectacular ruins.

The hospital has an outdoor lift that takes patients out of the building. Once outside there is a small space for parking in front of the hospital. If we want to play cricket we have figured out how to get most of the cars moved out of our way. Green Park is located close to many other hospitals and laboratories. Just walking for five minutes to Green Park to shop is an experience in itself every single day. The vehicles drive on the opposite side of the road than in America. It is so hard to remember that when you are walking. You have to cross the street at two places to get on the side of the shops. You would think that is a breeze but in fact it is a challenge. The first few times you are scared, but after that you just become determined and hold your ground for the opportunity to just go and expect them to stop or swerve. You have to feel like you are a vehicle yourself to create the space and have a command of presence for them to believe you are NOT going to move. It is no problem now because I get it, but those first few steps were a challenge in courage.

On our walk to Green Park you see bicycles used for transporting everything under the sun - regular bikes and ones that pull a wooden small trailer. They transport blankets, trash, furniture, laundry, hospital supplies on a regular bike (three cases of 1 liter bottles of water, boxed milk and other supplies), pipes, bricks, sticks, wash machines, brooms, etc. You see women in their beautiful bright saris doing manual labor carrying bricks, grain, sand, groceries on their heads, or raking rocks and digging trenches. The saris are beautiful and look like splashes of butterflies along the brown roads. There is a man on one corner that irons clothes (coal irons) on the street under a tarp and another woman in the street next to the shops that does the same. There is a man that gives men a razor shave outside in front of a mirror tacked to a fence. There are several people that set up on the street to make food out of one bowl and coal burner.

The shops along that strip really can provide anything you need. They are about 20 feet by 40 feet with an aisle of merchandise in the middle. You can barely walk around and pick out what you want inside. The places are stuffed with merchandise and some times you need to ask the grocery "boys" (really men) to find what you want hidden away. Everyone is very helpful. There is an amazing amount of American food here just in Green Park if you look hard enough. Not your favorites or comfort food necessarily but many, many familiar labels. Everything is in English and they write in English, but Hindi is the language most speak. You can tell who has been educated because they speak perfect English. Some of the children talk to you and are so proud that they can converse with you in English. Education is very, very important and taken seriously. You can see the pride in the children's' faces when they realize they can speak to someone white. There is a toy store, 7 little grocery stores, three salons, two magazine stores, two health stores, several phone stores, a camera shop, two restaurants and two coffee shops - all of them very small stores. The only difficulty with the area is that they are not accessible. You need several people to help lift Monica up onto the area (18" curbs and steps) and then the pavement is all cracked. We do it, but it's just not easy. She cannot fit into any store either. It's not fun being left outside while I go in to shop for groceries or plastic containers at the toy store. I go now by myself unless I bribe her with ice cream and then she will make the trip.

Actually for the first time, I told her I'd get her ice cream if she wore her braces to get up the steps and see the ice cream to pick out. I pushed her in the chair and she stood up and moved straight legged in the calipers up the huge curb and stairs and then she waddled up three more stairs to be in the shop and look at the ice cream. She was mad as a hornet but did it. Bribery works wonders. She is NOT comfortable in her calipers unless she is in physio. She looks like she would be but without them her legs do not support her yet at all. Her confidence level with the braces hasn't caught up with what she is capable of doing. Her knees still don't support, but that should come in time. The rest of her body is remarkably strong.

I cannot begin to understand psychologically how difficult it must be, because you cannot feel anything, to just put yourself out there with confidence. She is incredibly stubborn and fearless which is why she is still alive. Monica continues to amaze me everyday with her spirit, joyfulness and the willingness to rise up to any occasion and try everything. She never takes advantage of her situation and wants to get the absolute most out of every day!

Monica is helping me put together a slide show of Green Park. It should be up in a couple of days.

Delhi

To get perspective of where we are living you need to understand Delhi a little better. The city is one of the oldest continually inhabited cities in the world with a history dating back to 1,000 BC. One of the earliest structures that exists is the 1,600 year old Iron Pillar at Qutb Minar (at the time we saw this we couldn't figure out why everyone was so excited to see a pole! The pole also has never rusted.). There is Very Old Delhi, Old Delhi, and New Delhi. The New Delhi was designed to house the British administration in 1931. There are close to 800 politicians in Delhi when Parliament is in session and India is the world's largest democracy. Delhi is the largest city in India with a population approaching 22 million. The country has over one billion people living in it.

A quarter of the world's destitute live in India. Over 380 million Indians live below the poverty line, subsisting on less than US1$ a day and almost 89% of the total population live on under US$2 a day. Conversely, as India's economy grows millionaires are being created at a record rate and there are now over 100,000. This is a 20% increase over last year. Bridging the gap between the 'two' India's is perhaps the greatest challenge facing the country today - and for a visitor to come to terms with. There is a rapidly developing middle class, but you have to be sensitive to the fact that wages are low and even a middle-class family is likely living on less than US$1,000 a month.

Just watching how the hospital operates I assume there are extremes in what wages are being paid to people. In general I know that the sisters (nurses) were brought in from another state to work here and are living in a hostel together, the ward boys are hard laborers and come from the mountains and do not have hot water where they live, and then our doctors and managers have drivers to take them around.
The influences of Hinduism and the tradition of the caste system have created a culture that emphasizes established hierarchical relationships. Indians are always conscious of social order and their status relative to other people, be they family, friends, or strangers. All relationships involve hierarchies. In schools, teachers are viewed as the source of all knowledge. The patriarch, usually the father, is considered the leader of the family. The boss is seen as the source of ultimate responsibility in business.

I can see this applied in my little time observing people in India. Dr. Shroff is absolutely the boss and takes precedence over everything. When she asks for something it is done immediately. People take her phone calls when they are in a meeting. Dr. Sudeep has a phone dedicated to just her. He has it with him at all times and will answer it always immediately no matter what is going on. Dr. Shroff and Dr. Ashish realized on Thursday that Monica was having cognitive issues and was an A+ student and in advanced classes before she dropped out of school (they have been very focused on getting her to walk and trying to get any type of sensory back and didn't fully realize how impacted her quality of life is with not going to school), that Dr. Shroff walked away from us, went into talk to the director of the children's department and she came back and told us that Monica would be starting that day meeting with him from 12:00pm to 12:40pm everyday. During his evaluation of Monica he answered his phone (of course I thought he was extremely rude, as I have every time someone answers their phone in front of me mid-conversation) and started talking to Dr. Shroff. After he evaluated Monica (he stated that she was extremely intelligent and has a superb working memory (short term memory), but she has an information processing deficit. He now not only sees her alone daily, but is dedicating extra time to her throughout the day and asked her to come to his department whenever she has free time.

I continue to be amazed at the support system provided to us if the doctor believes we need additional support. They will provide you the resources if they believe your body needs them - never before. They really pay attention to what the patient's body is saying and what they observe collectively. They scientifically make their decisions and are constantly weighing the trade offs. I wanted more occupational therapy for Monica and couldn't understand why I couldn't hire our therapist outside the hospital time. Well, they just didn't believe that Monica needed more than two days a week. There was not enough proof that it was worth the investment. It is important and critical to do, but not everyday. I love that they are very clear cut in priorities. It is such a pleasure working with people that are decisive and invested in the outcome - my girl's quality of life!

The Garden of Five Senses
















Marg had heard about this garden from a previous patient and they spoke highly of it and she w
anted to check it out. She invited anyone who wanted to come with. My Mom wanted to go and I decided it'd be nice to get out of the hospital for a little bit. The irony of going to the Garden of Five Senses is the fact I am missing three senses and the other two kind of struggle. Marg, Bret, my Mom, and I all joked about how funny it was that I was actually going to go. We started coming up with ideas like well of the five paths am I only allowed to take two of them or can I pay a third of the price because I don't have all the senses to experience it? On a map the place looks pretty easy to get to, but of course no one knew how to get there. We were trying to describe it and our taxi guy was asking everyone he could find to see if they knew where it was. Finally we decided we have to try and if we don't make it there we will hopefully end up some other interesting place. The taxi driver pulled over three times to ask someone if they knew how to get there, and by the time we finally reached the place I understood how difficult it was to get to and how to map doesn't say that well where it is with all the construction they are doing. It took us about a half hour to get there. As soon as we got there we started noticing how funny some of the signs are. Bret and I had a good laugh about the "Please maintain decency" sign. He decided we needed a picture in front of it, so we took our picture in front of it with the perfect face. We all got a very good laugh about that one. The garden itself was spectacular. It is 20 acres and it has winding paths, it's a pretty romantic place you could tell because there were A LOT of couples there. Oh well we still had fun looking at everything. There were pretty steep hills to get everywhere, but there were ramps so it was all handicap accessible. After going through the garden we were hungry so we stopped at a restaurant that was at the entrance. The restaurant was called Fio and it had only opened about two weeks ago. Fio was gorgeous and the serving sizes were fairly decent. It was an upscale place though so it was a little more on the pricey side, not too bad though. The biggest joke was that they couldn't figure out how to split a bill. It took about six people and over a half hour to get our bill, it was pretty ridiculous. It was a fun, relaxing day, and it was nice to get to know Bret and Marg a little bit better.

These two pictures are of Bret and I in front of our "Please Maintain Decency" sign.

Room 204















I realized today that know one really knows about where we are living and what our room looks like. First we live in a 20 bed hospital. It originally was a hotel and has beautiful marble in the lobby, stairs and hallways. We live in room 204 and look out the front windows of the hospital on the busy street. We took a lot of time when we first arrived trying to make our room look as comfortable as possible and not look like a hospital room. That was a huge priority for me. I wanted it to have a local Indian flavor to it along with the creature comforts that make life a little easier.

Our room is the size of a dorm room - probably 15' by 20'. We have Monica's room, my room, a kitchen, social area, medicine area, changing area and therapy area. Monica's room is the hospital bed that has a hand crank to move the backrest up and down (no electric comforts). We bought her a quilt that has a beautiful bright cheerful elephant pattern in between two muslin pieces of cotton. She loves it. She has five stuffed animals in her bed along with her favorite pillow from home. We moved her bed against the window which runs the length of the room. The window has a sill that she has put all of her everyday items and nick knacks on. There is a night stand next to her bed
that plays her iPod and there is a clock that we brought from home. She also has a hospital bedside table (our kitchen table) that she uses for her computer, to do cognitive therapy and occupational therapy exercises, to eat meals off of and for medicine. Under her bed is her suitcase with all of her clothes for our stay that she pulls out whenever she needs to change. We truly are living out of our suitcases. There is not ONE drawer in the whole room or bathroom. The other two suitcases under her bed are the carry on luggage we brought FILLED with medicine. I pull those out when I need to refill medicine containers.

My room has a little wire rack, that was supposed to be for the bathroom, I use next to my foam fold out bed. It is a chair when not the bed, but I have to have three little pillows on it under my legs or I slip right off the chair onto the gro
und. There has been some laughter with that graceful move. Right now I am typing on the chair and my knees are actually higher than my chest sitting! My bed is pretty funny too. I have to have the bottom of the bed flipped under so Monica can use her chair to get to the bathroom. I feel like I sleep in a U shaped position with my feet always higher than my head. If my bed is flat then there is not enough space for her to back up into the bathroom with the wheelchair. (Our choice because I could arrange the room differently.) I am right next to the free standing closet which has full length mirrored doors. I wake up looking at myself - it is never a pretty sight to see yourself so clearly before you get out of bed. Next to the closet I made a table out of six boxes and covered it in a shawl. We use this as our medicine table and next to it I put her "legs" that I carry in a bag (her calipers and shoes).

I now know you all will be truly jealous of our kitchen. Just imagine the things you can create here! We have a 18" by 30" counter. A glass shelf on top of that which is 12" by 24". We have a toaster and a 2 cup kettle. A dorm refrigerator that we have filled with just water, jam, 6 eggs (I bought a skillet), and boxed milk. There is a larger wire rack filled with food and I purchased a couple of bags to also put snacks in.

Our bathroom has a beautiful granite countertop and a sink that I use to do the dishes in. Next to the sink is what we all call the showlet. There is a toilet and then the shower is open next to it. We have to squeegee the whole floor after every shower. We do have a plastic chair, which we use mainly outside in America, that
came with the room and we use it in the shower for Monica to sit in. If we have company I wipe it down and bring it in the room - some one visited us recently to ask questions about our experience here and they never knew they were sitting on our shower chair! They do provide a shower / commode chair that we gave back to them.

The room works and we get along great. If we didn't it would be a problem. I sleep with ear plugs because she needs to go to sleep with the music on and the headphones do not stay on her. Because she sleeps more (yippee skippy for the stem cells!) our bed time is midnight. When we went to Germany our bedtime was never the same time and often we were playing cards at 2:30am till I passed out. This has been such a better trip for me because she sleeps more. I am beyond thrilled. The only thing about our whole room situation I forgot to mention is the wheelchair. It is in the middle of the room all the time. On our next trip hopefully we will come WITHOUT the chair! I'll write more about where we are living in the next blog. We love and miss you all!

Occupational Therapy














About two and a half weeks ago I started doing occupational therapy with Harsha. Dr. Shroff thought it would be a good idea to start retraining my brain as to what things feel like. For example when Harsha rubs a cotton ball along my arm I think about how cotton used to feel and how it is soft and a nice feeling, but when she rubs the rough side of a sponge on my arm I think about how it is hard and not pleasant. Harsha's goal with me is to try and get my feeling back and she works on that by doing various deep pressure exercises, textile exercises, movement exercises, etc. I see her about a half hour twice a week. We haven't set confirmed days or times yet, but it's not like we have any other plans. Today in therapy we did about seven or eight different things. We worked on deep pressure, she would push my fingers together and push my shoulders down, etc. We also worked on movement by me bouncing up and down on a ball, moving a board back and forth and rolling putty into a ball. Since we are also trying to get smell back we are doing an aroma therapy by using an orange scent right now. A few new exercises came up today, finger painting, being wrapped up in a bed sheet like a burrito and getting a ball rolled over me, and trying to differentiate between hot and cold water. Hopefully therapy will help me a little bit, and I will be able to continue it back home. I think it might be more useful when I can feel again rather than now because when I feel again I will have to retrain my brain as to what everything is. It's up to the doctor's though and I will give each thing they through at me 110% and just hope it does something.


The pictures above are from today, they are me being rolled up into a burrito with Harsha applying pressure with a ball, and my finger painting.

Friday, October 30, 2009

"Family Dinner"

Tonight was "Family Dinner" :). Every once in a while about ten or so of us get together and order take out and eat around a huge table in the Common Room. We ordered Chinese food and some Indian dishes too. It's always fun getting to sit around with everyone and feel at home by eating a meal together. We all get to know each other a little bit better and we always have some great laughs together. Bret, Marg, Derek, Corky, Mitesh, Vasant, Gabe, Matthew, my Mom, and I were all shoved into the Common Room eating a delicious Chinese meal. It was pretty funny because once all of us got our food we all went practically silent. We were all so happy and content with our meals. Once we had all finished eating Matthew asked a very interesting question. He asked, "On a scale of one to ten, how glad are you that you came to India to do this treatment?" We then went around the table answering with whatever number we believed. Generally you could say that it ranged from a 6 to a 10. That is about the standard range if you were to ask anyone who's been here I think. Asking this question changed the mood of the Family Dinner, but it was really interesting to hear every one's answers and reasons. We talked about how different expectations are for spinal cord injuries than diseases. The main thing anyone with a disease comes here with is to stop the progression, anything else beyond that is just icing on the cake. With spinal cord injuries they hope for something, anything, to come back. We had about an hour or so long discussion about everything and it was really eye opening to see how similar but different we all are. It was really nice because all of us knew that whatever we said, we knew that someone else in the room would understand it better than someone back home. We all agreed on the fact that this trip has been bittersweet. Leaving home was really hard, but knowing you are going to try something to hopefully get better made it worth it. Now that we are here it's going to be really hard to leave because we have met so many amazing people, who can somewhat understand what you are going through and we want more treatment rather than giving it a break and going home. We want more now. Hopefully we get to have another dinner again next weekend. :)

Thursday, October 29, 2009

Celebration

Last week my physio gave me permission to start using my calipers outside of physio. My only rule was that they had to be locked and I had to have someone next to me to catch me if I were to fall. My Mom and I wanted to celebrate the fact that I was now allowed to start walking "on my own." We asked Gabe and Matthew if they wanted to come celebrate with us and get ice cream over at Green Park. Green Park is about a five minute walk from the hospital. I put my calipers on while we were in our room and got in my wheelchair and my Mom wheeled me there. She didn't want me walking in the street because drivers are pretty reckless here. When we got to the front of the ice cream store she let me get out of my chair and walk up the couple steps and into the store. It was so exciting because I could finally actually see the ice cream flavors rather than just the signs. I picked out the ice cream I wanted, a chocolate moo, and we went over a sat down. We were with Gabe and Matthew and we were all kind of in shock at how I was actually walking around. My Mom gave me permission to walk home from the store. I have never pushed a wheelchair before, and it was probably the weirdest feeling ever pushing my own chair home. I'm a pretty slow walker as you would imagine, so our five minute walk was about fifteen minutes. It was well worth it though! The best part of all of it was when we got back I ended up pushing Gabe with my wheelchair, like a train, pretty fast. We definitely weren't in very good control and hit the walls and plants a couple times. As I was pushing him we went passed Dr. Sudeep's office and he was very confused at first because he had only seen Gabe going by faster than usual and the front of my wheelchair with no one in it. He then saw that I was pushing my wheelchair and started laughing. Dr. Sudeep was so excited and happy to see me walking and pushing Gabe. It gave me enough confidence to know that when I get home I will be able to do more on my own.

Yes I did manage to spill ice cream all over my shirt, as always.

Busy, Busy, Busy

Today has been a super busy day! This is the first time I have actually gotten to sit down and turn on the computer all day. We woke up about 9:20 this morning and got ready for physio at 10. Physio was usual time, about 10 to 10:50. Dr. Shroff and Dr. Ashish made there rounds and my Mom asked them a couple questions. They then realized that I had gone from being an A student to dropping out of school and they couldn't believe it. The whole entire trip they have been focused on my sensory and walking kind of forgetting about how impacted my brain is. Today it clicked. Their goal has always been to get me to walk and feel, and my cognitive problems were put in the back seat. Once they realized how bad it truly was they wanted to really help with it. I am now going to start going to "cognitive rehab" as Gabe calls it. Everyday now a doctor is going to come up to our room for 40 minutes and help me with memory, writing, etc. After meeting with the cognitive doctor I came back up to my room and got ready to go do a procedure. I did the Deep Spinal Muscle procedure in the back of my neck. Originally they were going to do it in my lumbar area to make my legs stronger, but once they found out about my brain issues he changed it to my neck. I asked him when I was going into the room why the neck, and he said because it's closer to your brain, simple as that. Dr. Ashish was really excited when he found out how smart I am, and asked me if I would write up what feeling nothing feels like (if that makes sense). He wants me to write down what it feels like to touch a pillow or hold a drink, etc. Once he was done giving the procedure I was brought back down to my room and was told to lie down in bed for an hour. During that hour there was a Mother and Daughter from Australia and the Daughter has Lyme's Disease they think. She wanted to find out more about Nu Tech and if it is worth it. We told her it's worth every penny. About five minutes before my afternoon physio I was allowed to get up from my procedure. I was then off to physio to work my butt off yet again. Now I am done with physio took a little break to write this post. Gabe just came over and told me a couple people are going down to play cricket so I'm off to go play. I'll write more later!

Wednesday, October 28, 2009

Group Walk

Yesterday was a super fun day. When Hope was here we went to a little park called Deer Park. It isn't handicap accessible and my Mom wanted to be able to take everyone from the hospital over there to see the deer and just be somewhere different. She went out in between my morning physio and my afternoon physio with a patients wife, Marg. Marg and my Mom went to scope out and find a trail that we were all able to go on. They succeeded in finding one and around 3:30 we all left to go see Deer Park, Haus Khaus Village, and the ruins we found on our third day here. Ashley, his friend Darrio, Gabe, Matthew, Matthew's wife Kristen, Marg, Bret, my Mom, and I all went on this walk. I had been to Deer park two or three times before and it was fairly easy for me because I could transfer out of my chair onto a pole and then have my Mom put the chair through when necessary. With everyone else that would be much harder though so my Mom had found a path that worked. I had not gone on this path yet and it was fun to see it. The park is a lot bigger and green than I had originally thought it was, and none of us could believe how close it was! After Deer Park we walked over to Haus Khaus Village, which is right outside Deer Park. None of them had been to Haus Khaus yet, and they couldn't figure out how we possibly found it. We went down a back alley that had some pretty cool shops and it remind us of being in some European little town with cobblestones and the buildings. At the end of Haus Khaus are the ruins that my Mom, Hope and I had been to before. We wanted to show them how beautiful they are and how anyone and everyone is allowed to just hang out on them. They were all amazed at what was hidden back there and that it was so close to the hospital. A couple even said they would want to bring a book and sit there all day and read. It was definitely a lot of fun to get us all out of the hospital and go do something so simple together. We all want to go again soon! :)

This is a picture of me, Ashley, and his friend Darrio (pushing Ashley) at the ruins. It looks blurry, but it's the dust/quality of the air here.

Cricket

As a majority of you all know, India's sport of choice is Cricket. All the staff here just LOVES Cricket. We will be sitting in the Common Room playing games at night and one of the workers will come over with a cable box plug it in sit in the hall and watch Cricket. It's so funny to see how into it they get and how they watch ANY game, not just India. Matthew, Gabe's dad, went to the toy store one day and came back with a Cricket bat. I don't know all the terms for everything, but it was along those lines. On that day we decided we are all going to play Cricket one of these days. Gabe wasn't feeling well for about a week so once he started feeling better we got everyone outside and were playing Cricket. Gabe, who is a quadriplegic, was pitching and everyone else was in the outfield. We got our security guard playing, about five other patients, a couple caregivers, at one point one of our doctors came out for a little, and anyone who was walking down the street that wanted to play. The scoring was if you hit it over the fence it's a six anywhere else is a four. The wicket is made up of two bottles (coke bottles, squirt bottles, water bottles, whatever we could find). It's a lot of fun because anyone who wants to play can come out and play, and if you don't want to play you can just hang out and watch.

The Past Couple Days

I am so so so sorry we haven't updated in a while. It's been really busy here lately and I haven't really had the chance to sit down and post. If I did get the chance I'm Skyping back home or responding to emails so it's been a little difficult lately. Thanks for sticking by us though and still checking for a new post.
For the past couple days we have mainly just hung out around here, trying to find ways to keep us all entertained. We are all starting to come up with more and more ways to keep us entertained. Lately it's been cricket during the day, games at night, and occasionally walks around Green Park. I'll post separately about all of those. Two people left this week, but for the next couple weeks no one is leaving so no goodbyes for a while. Goodbyes are so hard because you don't know when you will see these people again and you all become so attached to each other.
I reached my six week mark today which is really exciting for Lyme patients. Usually around six weeks everything starts to come together and that's when you start seeing the most improvements. My mom and I are both getting super excited because we are just waiting for the day I wake up and say "Wow, I can feel." It will definitely be crazy if that will happen. The doctors are really looking forward to seeing what improvement I will make next, whether it be smaller calipers, feeling, my vision, anything.
Sorry this has taken so long to update, it should start being updated again daily, even if they are super boring posts, just to make sure you guys are all in the loop.

Sunday, October 18, 2009

We Are Thriving!


I am doing great and actually thriving! I love India and am happy here. Everything with Monica is going well. She is getting stronger physically each day with her walking. She has gone from full calipers (up to her waist) to just knee braces right now. It is amazing to see her improvements every day even without any sensations. On Monday she couldn't hold herself up in the new braces - they customized one for her feet and ankles and one for her knees. On Tuesday she could just stand using the parallel bars. On Wednesday she began walking using the bars. On Thursday she put on her shoes for the first time in seven months (without the feet and ankle braces) and practiced with the bars. On Friday she walked off the parallel bars (only in knee braces) around the physio room without any additional support (such as a walker or crutches) and I convinced her physio to let her take the elevator upstairs to the reception area to look outside. I believe she may even walk off the plane by the time we are done here. It is amazing how fast she can make gains sometimes. On Monday I never, ever dreamed she would be able to stand up in the new braces. On Friday she was ready to walk out the door!

The thing I love most is the miracles they have everyday in physio. It truly is a miracle that occurs when a paraplegic walks across the room in their calipers with a walker, or someone with ALS kicks the ball a little stronger, or a quadraplegic takes his first steps in calipers in over nine years, or a quadraplegic be able to move his thumb for the first time. I think that is why I am doing great. It is a positive inspirational place to be and you feel everyone from the patients, to the doctors, to the physio people, to the nurses, to the people that work at the front desk are behind the patient wanting them to succeed. I so wish that everyone could see what I see everyday. I do the "happy" dance all the time to celebrate each accomplishment with my new friends.

Monica's doctors - Dr. Shroff, Dr. Ashish, and Dr. Sudeep - all believe that Monica has something bigger than just the Lyme. They, nor in their research, have not been able to find anyone like her. Dr. Ashish agreed that no doctor in the world probably has seen a patient like Monica before. He said she is exactly like a paralyzed person. Monica's eyesight is still blurry and her swallowing is constricted, but like the fighter she is she has adapted and soldiers on. The doctors are truly amazed by her coping skills and adaptability along with her very positive attitude. I am so happy being here because I finally found my doctor "House" I've been looking for all this time. I have two brilliant minds trying to figure it out. Dr. Ashish even said that he and Dr. Shroff are debating about what Monica has and discussing ways to fix it. Dr. Sudeep we have the closest relationship with because he is here twelve hours per day, six days per week. He has a very good rapore with Monica - he really listens to everything she has to say, knows how to make her laugh, and can explain everything happening to her in metaphors which helps both of us understand. The three doctors have a very close relationship working together and it is exciting to see such team work - after all this time, I finally found our doctor "House" in three very dedicated doctors brainstorming and working towards a solution for my girl!

I am volunteering about 40 hours per week and loving it. I am writing a Welcome Packet for the hospital to give to each patient when they arrive. I love doing this type of work and am good at the details. I started and thought it would be a small packet and now I am up to about 30 pages. There are so many questions when you get here and so much information passed to each other is incorrect. I thought having it all down in a packet would eliminate a lot of griping. The griping is because no patient really knows what is going on. I believe the hospital is going through growing pains. They have policies and procedures but none are written down for us. I took a cold shower for ten days because I could never figure out how to get my solar powered shower hot. You turn the handle to the middle - wait a long time for it to warm up - then turn the handle to the left. Basic stuff but you have to know it. I am getting complete freedom to create things - forms, etc. to help out. I am even trying to figure out being a tourist and how to recommend places for people to see in the packet. It touches on all areas and I am beginning to understand how the hospital works and it's limitations due to culture and customs.

Working has been very good because it gives me time away from Monica (I work in the common room on the hospital's computer) and this has helped her develop independence. The nurses are supportive of me leaving her alone in her room or going out for a walk or being with another caregiver. Monica has a buzzer she can push if she needs something or if there is an emergency. I have been too afraid for the past two years to leave her alone. I will always let her play with a friend (I can do a chore then) or be with her dad or the boys, but I have had very few moments where I am "off" and not thinking about her. Being here has been such a gift to me because I am able to find a better balance and show her that I am a well-rounded, complex, social person. I believe my family has forgotten who I really am, but here I feel that the "net" is there to catch either one of us if we fall.

It took sometime but we now have a group of people playing nightly games of Rummikub in the common room with Monica. I keep going out to buy new games to see if I can keep them all interested and we bring snacks too. We have quads and paras playing. Rummikub continues to be everyone's favorite. We even got Dr. Sudeep to play one evening and he had a great time. He was so impressed with Monica's ability to process the math and logically develop strategic plays. Her brain has always been very good at math. Therefore, it is hard to comprehend that she cannot remember a paragraph she just read. Rummikub has been a great game to create a sense of community and everyone has become such good friends through laughter.

This is exactly where we should be; I feel it and want it so badly for Monica. It is going to happen!

On a Different Note

Yesterday a friend messaged me on Facebook one of the most amazing messages I have ever read. She and I don't know each other very well, and have only talked a couple times through mutual friends. My friend has known since she met me that I am sick, but she never knew to what extent I am sick until reading my blog. When I checked my Facebook this afternoon I was surprised she had left me a message. I would love to share the message with everyone (with her permission of course) and tell you why it meant so much to me. This what she messaged me saying:

hi monica,
i know we never have been that close and i've only talked to you a few times back at blach, but today i read your blog on your trip to india, and it seriously moved me to tears. i knew that you were sick, but i never new the extent of what you were going through. reading about the symptoms you are going through and all the procedures you are having makes me so thankful for my health, but at the same time i wish i could do something to make you healthy. i just want you to know that i hope you are doing well, and my prayers are with you.

After reading this I was at a loss for words. To tell you the truth it almost made me cry. People have always told me that my story affects others, but others had never told me it affected them so I never really believed them. She finally told me. I hope that when you get a little glimpse of everything I go through on a daily basis, you realize your how precious your health really is. Your health is the one thing of everything around you to not take for granted, for everything can change in a second. I used to take it for granted, I admit that. I used to think I was invincible like I could never get sick. You have to remember that everything can slip away in a moment, so appreciate what you have because there are people out there who don't have the things you have. I want to thank you all for following my blog and reading about what I go through. I know you will never fully understand what I am going through and how hard it is, but you know it is there. It's hard to share with everyone what I have to deal with because I don't want to be classified as the girl who is sick. Thank you for giving me the time to do it, and actually listen (or read).

Some people comment on my positive attitude about it all. The truth is I'm scared out of my mind of the unknown thing that has attacked and taken over my body. Even though it's scary, it's the cards I was dealt and I decided I'm not going to dwell and complain about it. I'm going to live as best I can and whatever I can't do I know I have people behind me who will make it possible for me to do it. I will never get better if I constantly am telling myself I am stuck with this the rest of my life. Even if I am stuck with this the rest of my life, I'm still going to be out there making the best of it. You only get to live once :)

By the way we hit our month mark, we have officially been here a month and if we don't change our date should be home in a month too!

Wednesday, October 14, 2009

Rummikub

Rummikub is a game played with little tiles and the goal is to get rid of all of your tiles first. Your first move has to equal a total of 30 points (it's fairly difficult) and after you get your 30 you start working to get rid of all your other tiles. To get rid of tiles you put them down in either a sequence of the same color (a blue five, six, seven) or in three or four of a kind that are multicolored (a yellow, red, blue, and black thirteen). I have grown up playing this game, maybe since I was seven or eight, and it's always been one of my families favorite games to play together. Well my mom brought it with us to India to play when we get bored. Good thing she brought it because now every night, it's becoming a ritual, a couple of the patients all sit around a table in the recreation room and play. I originally was the only one who knew how to play, but I've taught around six or seven people how to play. We all go down usually after dinner comes (whatever time that may be) and play for a couple hours. The only bad part is you can only play with four people at a time so sometimes someone gets left out, but they still watch and help out when they see a move. It's really fun to play with everyone because it gives us all something to do, keeps our brains going, and let's us have fun and get to know each other better. I love going down and hanging out for a couple hours talking, laughing, and just having fun. It definitely helps to keep your mind off of some upcoming procedure that you are nervous about, but it's also a good time to ask all questions you have about the procedure. We get pretty side tracked in talking about stuff that we forget who's turn it is quite often. Our rules are somewhat more lenient than the real rules because we like to have everyone to be able to play equally so we'll start swapping tiles to help someone get their thirty. Playing Rummikub with everyone helps me not worry about the treatment and keeps things light which is always good.

Monday, October 12, 2009

I've really only written about the good changes that have been happening, but to get the good changes you have to go through the bad ones. After my first procedure, the caudal, I had problems swallowing for four days. I quit eating and it was extremely difficult to drink anything. On the fourth day though everything went back to normal and I didn't have any other problems with swallowing until my second procedure, the epidural. Since finishing my epidural procedure I've been having difficulties swallowing again, but this time I know how important it is to eat and drink regularly so I am forcing myself to eat and drink as much as possible. The doctor checked out my neck and throat this morning and said my tonsil is enlarged (they are already massive) so he gave me antibiotics and we are hoping it will go back to it's normal size soon. My neck is also a little swollen right now, which isn't fun and could be contributing to why it's hard to swallow. Also since my epidural procedure my vision has been worse than usual. It's a lot more blurry than usual (which I've said in a previous post), but hopefully soon it'll start clearing up. We tried doing stem cell eye drops to see if it would do anything and so far no results, but they say it can take some time. Yesterday I wrote about in the post before this was not a very good day. Overheating, blurry vision, and difficulty swallowing definitely don't make your day very enjoyable. t really showed me that this isn't going to be easy, it's going to be REALLY hard, but I have to push through it if I want to get to my ultimate goal of being healthy again.I'm going to have to deal with the bad things that come up and think about the positive benefits from it instead of dwelling on the negatives. It's going to take a long time, but I know this is the place I need to be and it's worth every penny.

Sunday, October 11, 2009

Akshardham

Sunday is the off day around here, we get to sleep in! No physio, only injections in the morning and at night, the doctors all get their day off, and only a couple sisters have to work. My mom and I were woken up around 9 because the "Sunday" doctor wanted to meet with us to check on one thing, then we fell back asleep and finally got up around 11:30. We think I somehow managed to overheat myself by having my shower to hot and there not being any ventilation in the bathroom. My head was going in circles and I couldn't function at all. I turned the air conditioner on as high as it goes and at the lowest temperature. On top of that I turned the fan on the highest speed trying to cool myself down. After lying down for about ten minutes I realized it wasn't helping at all, so I went back into the bathroom and took a cold shower. When I was done with my shower my head wasn't spinning as much, but I definitely still wasn't doing good. It took around two hours to cool me back down. My mom and I had planned on going to a temple called Akshardham, a highly recommended place to go by one of my doctors, with Gabe (a quadriplegic who is around my age) his dad, Matthew and another patients parents that afternoon and I really wanted to go. It was about 2:30 and I still wasn't doing that great, but I was determined to go. My mom had a sister check my vitals, and she gave me clearance to go. Even though I wasn't a hundred percent I decided I wanted to go.
I am
SOO glad I pushed through it and went. It was one of the most spectacular places I have ever seen. All six of us got the "royal treatment." Everything thing there was handicap accessible which is quite the change. Not many places around here are handicap accessible, there is always at least one or two stairs that we have to get over. We got an English speaking guide to walk around with us and tell us about the history and facts about the temple. IMAX theaters are not my favorite at all, especially when the movie is in a different language. They gave us headphones that were supposed to translate everything into English, but it was way too hard to keep up with. After watching the IMAX movie about the story behind the temple we went on a boat ride that totally reminded us of Disneyland's "It's a Small World." The boat ride told us all about the history of India and was interesting if you forgot the fact you felt like you were right at Disneyland. Once we got off the boats, which went smoother than expected considering Gabe and I both had to be transferred out of our chairs into the boat, our guide took us to watch a musical light show. It was incredible. The light show told the story of the yogi, Swaminarayan, whom the temple is dedicated to, and was better than I had expected. There were probably around 10,000 people watching the light show along with us. We got front row seats on a little ledge that looked dead center over all the fountains, the perfect seats. Our guide then took us into a room, the prayer and wishes room, and we got bracelets tied to our right wrists that mean good luck. The most interesting part of the room was when we were each handed a little cup of Ganga water to poor over a statue of the child yogi. While you were slowly pouring the water over the statue (I had my mom do it for me because I couldn't stand) you are supposed to make a wish. It was a experience I won't forget anytime soon, and I am so glad that I pushed myself to go. The bad part of it all was that we weren't allowed to bring our cameras in so I will put up a picture that I found off the Internet to give you an idea of what we saw.

Thursday, October 8, 2009

Epidural Procedure

When you hear epidural you think about someone having a baby, no I'm not having a baby, even though I have MILLIONS of little baby stem cells inside of me trying to repair my body. Most people don't realize that in a pregnancy an epidural is just a type of medicine that goes around your spinal cord that makes you numb from the waist down or from where ever they inject it. Well an epidural procedure is along those same lines, except they inject stem cells around your spinal cord rather than a medicine to numb the lower half of your body. The epidural is the layer that surrounds the spinal cord.

I have a lot of anxiety in doing procedures because I am deathly afraid of getting pain again, but it's the one thing I would love to have again. Confusing I know. A little while after arriving at the other hospital called Guatam Nagar, I got an IV and took two antibiotics.
The doctor that was doing the procedure decided it would be best if I moved times with someone else who was scheduled ahead of me to try and calm me down and get it over with. About an hour later I was called in for the procedure. I was put onto a stretcher and pushed into an old school elevator, the kind that you have to close the gates and you can see through them, with one of the sisters and two guys who work in the procedure room, one of them is named Opi. The whole thing went really smoothly, I didn't freak out this time thank goodness. The doctor injected around 50 MILLION stem cells into my back during that 15 or so minute procedure. Crazy. They then helped me back onto the stretcher and took me back up to my room. One of my favorite people working here, Opi, was helping with the procedure, and he was making sure I was okay throughout the procedure and he helped me get back into my bed. I brought five stuffed animals to India with me, and my mom packed all of them with us when we went to the other hospital for the procedure. She lined them all up along the end of my bed and the sisters (nurses) and Opi thought it was the cutest thing they had ever seen. He actually before he helped me into my bed, sat on the far end of my bed to take a picture on his phone of all my stuffed animals, it was the cutest thing I've ever seen. After getting back in bed they brought in the two bricks again and raised up the bed. Opi then moved all the stuffed animals from the end of my bed and placed them all around my head so I could hold them.

Towards the end of the procedure a friend visited, a gecko. As I was watching television, getting really restless for being on my back for so long, all of a sudden I saw this little thing dart through the window onto the wall. I looked over and said "Mom, we have a friend!" She looked over and asked me okay so where is it and what is it. I pointed over to the wall and she saw the gecko and right away got out her camera to take pictures of it. He stayed there til we left.

Since the procedure I've shown really good results :)! I got a couple side effects from it, which in a really twisted way is fantastic. Swallowing is really, really difficult (it's a previous symptom) and my vision is much more blurry than it usually is (I have no idea what that means). Right after getting out of bed, after lying on my back for five hours, I had a temperature (which is your bodies defense to all the stem cells and is normal) and I was getting really bad tremors that have slowly calmed down a little bit. My doctors are really, really excited for all the progress I'm making and are convinced I will go home completely changed. All I can do is believe them and give it a 110% by thinking positively, having a good attitude about everything, doing physio everyday, and doing yoga (no matter how much I hate it).

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.

Monday, October 5, 2009

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.

Sunday, October 4, 2009

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.

video

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.