Well... I got a pressure spot (circulatory skin issue with paralysis) on the plane ride over. These spots could lead to sores/lesions requiring surgeries with up to 6 month recovery times (in bed). Luckily mine was just severely bruised and blistered, but it was on my tailbone so I had to basically stay in bed if I wasn't getting treatments or PT/OT. It was still black after a few days, so they injected stem cells into the area and overnight it went to a bright pink... Within the next day the blistering stopped. But, it still took another week to heal. I cannot imagine how long it would’ve taken w/o the stem cells... I've never had any skin issues and it was really scary.
I finally received clearance to move around and was up for two days when the new/increased pain started. Which is good, new connections being made... But, it is miserable… They finally gave me some pain meds which are "stem cell friendly", but it's caused scary low blood pressure…
We started standing me up in braces Tuesday and I balanced immediately without assistance. My core is really strong. My PT said she's never seen a quadriplegic start-off as strong or balanced. And I’m improving/balancing more without assistance each day.... (except today… because of my low blood pressure, I couldn’t stand for more than 5 minutes w/out almost passing out… uhg… back to bed… lots of fluids and electrolytes)
Lol, I'm typically one tough cookie, but it's been a rough three weeks... Despite all of that, I'm getting stronger and making improvements! (Which is huge b/c most people don't see discernable results for several months (after they get home)...
I wasn't prepared for the emotional and physical pain accompanying this journey... I was scared of it, but not prepared. Luckily the patients here are wonderful and inspiring. And the staff is wonderful!
I will write more soon, but here are some e-mail updates my mom has written/sent out...
It is 5:35 Monday evening right now and 6:05 a.m. in OK and TX. We are a bit tired but it has been exciting. They evaluated Shannon today and she will get her first shot in a bit. Exciting.
> So far the clinic has been very positive and helpful. Of course things are different here v ery 1950ish in looks and procedures. Our room has very good views of the surrounding buildings.....lol.....very close.
The architecture is pretty but old and in need of repair.......
I walked to a market area and it reminded me of a Mexican market except much poorer. I checked into getting a phone, but I needed a passport photo, a copy of my passport and visa, and a local address and phone number. Of course I didnt have any of that yet. I took a picture at a photo shop and will get the other stuff copied here at the clinic. It cost me 100 rupes to get the photo. Not sure how much that is US dollars, but I am going to figure it out.
> I am sitting on the side of the bed, barely holding on and my back is hurting, so I'll close for now. Our room is nice and a bit bigger than the one in Baylor. We only have one converter plug and that is why I am hanging off the bed. I have to plug in at one spot. Can run only one thing at a time.
> But , we do have electricity..........
---- Lola Davis <firstname.lastname@example.org> wrote:
TUESDAY DAY 2
> > hey,
> > hope things are going well in texas. i am not going to use caps because it takes too long. shannon had a long day. we went for x-rays and ultra sounds today to get a baseline. quite a trip by taxi and it took 3 hours to complete........very small clinic but doctors did the ultra sounds not nurses. one doc did her heart and a different one did the lungs and abdomen. she then had physio....physical therapy.........looks alot like project walk......and like what you do on the massage table plus some balancing.......she goes at 9:00 a.m. tomorow...........she got a shot this morning and this evening...........she has also been sleeping a bunch........but we are doing fine.......the spot on her tail bone has blistered........i hope it heals without breaking open......when we are in the room she stays in bed to keep off the area...
> > india has narrow streets and no traffic laws that i can tell. people usually stop at red lights, but it is bizzare how they drive. i understand why those that can have drivers....professionals at avoiding collisions ......honking is essential to avoiding walkers, motorcylcles and cars all trying to occupy the same space. the sidewalks and streets are used to park cars so people have to walk in the street. people also drive both ways in streets that are one way....lol.....people just stop and back up to turn around......so funny...but as i said, cars and narrow streets....our SUVs would not be able to drive these streets...a small audi sedan looks huge compared to most of the cars......there don't seem to be building codes either....at the clinic a 1 inch gap between to the tiles and wall base was just left unfinished..........
> > there is so much dust...i don't understand why.....but it is a fine dust that covers everything..........people have to wash off their drives and sidewalks .....there is a lot of building going on and that is bizarre too. women and children are working right along with men........but it looks like mud and dab work and it must be for a sewer system of some sort.
> > i bought a phone this evening but it hasn't been activated yet. i hope i didn't mess up when i put our edmond address on the form. since my passport had oklahoma, i put our edmond address but my visa app was shannon's address and they may have wanted that one..........i will try to get it done tomorrow if i don't hear anything by then....
> > our dinner just came, it is 6:52 p.m. here so i will close for now.
> > love you, lola
From: Lola Davis
Sent: Thursday, February 04, 2010 3:32 AM
Subject: FW: day 2 &3
---- Lola Davis <email@example.com> wrote
WEDNESDAY DAY 3
> I didn't mean the cab ride was 3 hours, the entire trip and clinic visit was 3 hours. Lots of waiting time at the clinic. The actual cab ride was only @ 15 minutes each way. The clinic people came out to get Shannon on a stretcher and she spent the entire time on the stretcher when she wasn't being x-rayed, etc.
> This week they are taking it easy on her and letting her rest up. I am glad so that she can keep off her bottom.
> She is doing physio once per day this week and then twice a day next week – and OT. She had a little fever this morning with some coughing but she seems to be better now (it is 1:15 pm right now). They filmed her this morning. So far she has had 4 injections in her arm.
> We are meeting a lot of people. 4 Americans, 3 British and we have heard that there are Austrailians here as well. Lots of Indian people are here too, but they don't stay at the clinic..........I think.
> Our lunch just came and we are hungry.
> Love you, Lola
From: Lola Davis <firstname.lastname@example.org>
Date: February 10, 2010 6:15:49 PM GMT+05:30
Subject: Reaction to India
The India that I have been able to see is a strange land with amazingly diverse cultural, economic, housing, buildings and langauge mix. It certainly is a poverty stricken, third world country that doesn't seem to know that it is. While there is a growing middle class, most of the people just exist. The good thing is that most people seem to want to work and they are attempting to sell something, product or labor. But the country is poor, poor, poor with politics a bewildering complex network inhibiting real progress.
Delhi is preparing for the Commonwealth games in October 2010 and is building a metro system, an atheletic village, and upgrading various other systems including burying electrical lines. As a consequence, there is a fine, blackish/brown dust and construction everywhere I have been. The windows and doors are not airtight in the clinic, so it comes in everyday. The floor boys mop the floors over and over all day long. They wash the driveway and sidewalk too.
The metro system construction has resulted in miles and miles of plywood barriers right in the middle of roads and congested traffic, but I think the congestion is normal. Within the barriers are cranes and other large road machines, but also dozens and dozens of people building aspects of the metro by hand. Women, children, and men work by hand to dig, brick, and cement different segments of the construction. With a billion residents, Delhi doesn't lack for labor.
I have been to several markets, neighborhoods near the clinic and a temple so far. The buildings are a bizzare mix of very pretty traditionally eastern architecture to modern designs right next door to buildings that look like they have been hit by an earthquake. The facades are gone from many buildings and new facades are being built The streets are atrocious--narrow, patched, crumbling, etc. Markets exist in narrow alleyways, shops hug sidewalks, and it is all just very dirty. In the midst of so much congestion of people and shops and vehicles, are the beautiful eastern fabrics on almost all of the women. The traditional dress of India is worn by almost all women and the fabrics are shear, sequined, adorned with jewels. Beautiful and bizarre in the midst of poverty.
I went with a couple of other women today to a supermarket, Spencers, which is common in England. The trip there was scary on many levels. I told Petra and Hannah that my husband would be very upset if he saw where we were walking. We walked across a major road with a group of people who simply held their hands up and traffic slowed enough to allow us across, we walked down narrow alleys with an assortment of things...........a temple tower with bell, a sewage canal with trash and yuk too mushy to tell what it was but with tiny rooms built into the buildings along the canal and people living in them, a bridge with a pig living under it eating garbage, the alleys and streets to and from the super market were filled with shops all trying to sell something. The shops are open fronted, tiny @ 8ft by 15 ft, but of an assorted size, with everything imaginable. Fabrics, tailors, chemists, butcher shops, electronics, etc. I forgot my camera so I won't get too many pics, but I will take my phone next time I go to get a few pics. I may just have to buy a camera because it is all so indescribable.
I have not been accosted by beggars too often. There are little children painted up as animals that work certain areas and we are told they work for a sort of mafia and are sold to the mafia by their parents. I have seen them twice. So sad but we are warned not to get out money out for them because they will swarm you. But, regardless, the people mostly just stare at us. Some give a hostle stare, men and women, but mostly they are just curious about us.
At one market downtown about 15 minutes from the clinic, the buildings look like Roman ruins. The buildings are built in concentric circles and at one time must have been magnificent. Huge architectural wonders with columns and arches, so pretty, but today, in need of paint, cleaning, and repair. Crumbling wonders now. I can not imagine how they will be ready for the games. Yet, shops exist in the buildings!
I will close for now.
From: Lola Davis
Sent: Wednesday, February 10, 2010 6:00 AM
Subject: update on Shannon, February 10, 2010
Monday, February 8, 2010
Shannon continues to feel the sensations that emerged with the spinal injection last Thursday. She has a connection to the right leg and can feel pressure in the arch and on the balls of both feet, but mainly in the right foot. She is sitting up straighter and stronger during physio and can feel a stronger connection to obliques and abs. When she tries to do a sit up, Dr. Shroff and I felt the ab muscles fluttering as they tried to contract. Dr. Shroff and Dr. Ashish came by and had her move her legs and we all saw slight quivering of feet. We were all excited. Dr. Shroff is even pleased about the pain that Shannon is experiencing in her hips down----which has increased from the former level and areas.
She is also having more response in her fingers at this time.
Wednesday, February 10, 2010
The day started a bit slowly with Shannon feeling drowsey. She went to physio and had a good session in the morning but then she received an IV treatment of stem cells @ 11:00 a.m. Within an hour she was feeling nausaseated and very tired. She tried to do physio for the afternoon session but had to stop and go to bed. Several of the patients received the same treatment today and had similar reactions. One patient received her IV last eve and she said the nausea last @ 12 hours. So hopefully it will stop soon. Shannon had a bit of dry toast and that has helped. Right now she is having quite a bit of nerve pain, but the doctors believe that is indication that the stem cells are working.
Dr. Sudeep is the physician on duty during the week in the clinic and he is pleased with Shannon's progress. He checked her pressure sore yesterday and said it is in excellent condition and she shouldn't let it slow her down. I looked at it today and it certainly looks great to me too.
From: Lola Davis <email@example.com>
Date: February 12, 2010 4:58:52 PM GMT+05:30
Subject: Friday, February 12
We had a group meeting today with all the patients at the clinic introducing themselves and talking about their progress. Many different ailments here. Two with lymes disease, one with a neural disorder, a MS, four with sci, several children with CP and several with strokes. Each patient told of his or her progress and how long they have been a patient. I think each disease or disorder has its own particular treatment. One lady from Austrailia has been paralyzed(L-1) since 1967 and she felt new sensations in one of her feet.
Dr Geeta is actually going to write a book about her treatments and have patients tell about their successes. She wants the treatment to be available to the world. Her mother is a patient here. Her mother had a massive stroke and begain treatment with Geeta within 3 days (she lived in another city) and has almost no symptoms!
They have successfully treated lymes, alzheimers, RA, and other autoimmune diseases, and MS, neural motor, etc. They discussed cancer treatment and said it would help with cancer, but most cancer patients came to them after having exhausted other kinds of treatment and were usually well advanced in their cancer. Obviously, the sooner that one receives treatment the better. Geeta also said that some people had cures but that those with progressive neural disorders typically improved but could not stop treatment due to the progressive nature of their disease.
Shannon continues to get stronger but is having quite a bit of pain. I think her pressure sore is healed now and she should be getting up more tomorrow.
Well, I'll close for now love you!