End of the third week of treatment

It's been a slow week here in New Delhi, no real news to report other than it's getting hot over here with temps hovering in the  100-104 range in the day, but cooling off to around 75 at night. Next week it's supposed to get closer to 110 and I am told that it gets to around 115 in May.  I was under the mistaken impression that it would be hot and humid here, but I was pleasantly surprised at how dry it is. On the other hand something that was not such a nice surprise is the wind combined with a very fine airborne sand.  Nothing's better than preparing for dinner with a nice cool shower, putting on clean clothes  and walking out the front door and getting  hit with a hot blast of grit in the face, then feeling the dust making its way between one's neck  and shirt.  

Jill is in good spirits, diligently does her work and is a favorite face around the clinic.  Several  times a week she does have her  low moments that  last for only a few minutes.  We get out of the clinic daily and go to the market where she continues to enjoy a eating brownie. It isn't easy for me to asses her strength and balance as they seem to vary daily but her PT does think she is getting stronger and has her on a treadmill.  Next week the pace picks up a little, she goes to the other hospital for a three day "procedure" starting on Monday  and they plan to double  the cognitive therapy when she gets back to the clinic.

I have added more photos and some YouTube videos.   For those that don't watch YouTube videos  much, to avoid the start stop due to slow download speeds, I just turn the volume down and let them run through once, then play the video again and they play through without stopping. 

After two weeks of treatment

 It's the end of the second week of treatment for Jill.  She did go for her first procedure on Tuesday, which involved injecting stem cells in her neck.  Although it's difficult for me to notice, her physical therapist informed me that she is scoring higher on her balance and strength.  They have a little obstacle course that's composed of small stairs and ramps which she walks through and they mark her down if she needs to hold the rails, stops on the stairs etc. 

Her days consist of two physical therapy sessions, one or two stem cell shots and one or two hours of cognitive therapy.  The cognitive therapy is tough on her because she knows how far she has slipped back and really dreaded going initially.  Her instructor encouraged her  to come and help with the younger kids and  she is now going without complaints or sadness.  There is definitely no shortage of kindness and empathy from all the staff members in the facility.  

With the help of a wheel chair, Jill has gone out several times into New Delhi and looked around a little. We have taken all types of transportation, from the infamous green and yellow three wheelers to the cabs that looks like a '50s vintage English cars. Then there's our least favorite, the taxi driver that hangs out across the street from the clinic who we avoid if at all possible. The problem is that the clinic arranges some of our adventures with him and we just have to grin and bear it.  This guy is looking for trouble, trying to intimidate other drivers and really aims for pedestrians, forcing them back to the sidewalk or to at least dash out of the way . We have gone shopping for bargains at the local markets as well as a posh western style mall.  Unfortunately Jill can't drink tea these day's but we did stop by the Imperial Hotel, http://www.theimperialindia.com/home.htm . She decided that as soon as she's able, we're coming back for high tea, very "upper crusty".

I'm sure the highlight of the week was when her high school friend Alvin came to visit on Saturday. Alvin lives in Hong Kong and works for Cathay Pacific airlines. It was a very pleasant surprise and Jill enjoyed hearing about what Alvin's up to  these days.

Jill's sister Erica is working for the CDC during the summer and will be in the Nanning, China office.  Hopefully Erica will be able to come to India for a visit.

After a week

We are now ending the first week of treatment.  The weeks lows include everyone getting a little sick including Jill and the high is the fact that Jill  has noticed a positive change in her  swallowing. 

Lately she has not been able to take any food orally  and just uses a feeding tube. The problem being, she is unable to chew or coordinate tongue, pallet etc, to successfully swallow. During that last two days she has been able to consume part of an orange and a brownie.  

The other high was on Friday morning when Dr. Schof scheduled a meeting with all the patients and caregivers for a question and answer session. There were about  20 patients present and the session started off with patient introductions and brief summary of their experiences. About half were new enough not to have much the share, but several had been here before and shared details with the group.  Paraplegics report major improvements in muscle control. They are not able to walk but they can stand and the use the toilet which they could not do before. One case that I thought was very interesting was a Doctor with Parkinson's tried the treatment. Her son, also a doctor, came with her but was claimed to be quite skeptical. They mother and son both claim that there is no question that her symptoms have be reduced to the point that she is not taking her medication. Her knee jerk was brisk and now it is normal and her tremors are much reduced (even without meds).   

Regarding the treatments, Dr Schof has a rather mysterious way of administering the schedule. Generally they give one or two doses per day of stem cells, either by IV or inter muscular injections and sometimes by IV drip. It is not clear to me how they decide on the one or two injections. There is one other "procedure" as they call it, that is given in another hospital, this procedure involves directing the stem cells more in the area that they are needed, generally they are given somewhere in or around the spine.  Patients are no notified more than a day in advance that a "procedure" is going to happen. Jill had one "procedure" scheduled but it was cancelled due to the fact that she was running a fever.

The doctors and patients that have been around say that results usually show up in the first few days, then after about 6 weeks and most of the time continue after the patient leaves. 

I am going to try and post every few days and if I can figure it out I would like to put some video and photos on the Blog.

Steve

Dear friends,

As most of you know Jill is seeking stem cell treatment for her brain condition and we have decided to go to see Dr Geeta Schrof in New Delhi. (Googling the Dr's name brings up plenty of info if you are interested) We made the 22 hour trip to New Delhi via Taipei arriving on April first. It was long but we were very comfortable with the connection and all the related transportation worked quite smoothly. We were picked up by the clinic ( Nutech Mediworld) and Debra checked Jill into her room while I searched for our hotel (Green Meadows). The way the clinic is organized, a patient and caregiver stay in the hospital room, which is more like a hotel room. The caregiver is usually a parent or friend of the patient who stays with the patient 24/7. In most cases there are two people that can serve as caregivers and need a hotel for the second person. By US standards the hospital and hotel are clean comfortable and well equipped, but not luxurious. The neighborhood is a mixed bag ranging from a Hyatt nearby to people sleeping near the side of the roads. Traffic is about as chaotic as it gets and driving is an experience with horns, traffic jams and the occasional donkey or cow wondering through the traffic as if there was nothing going on. To get a sense of the place you can look at a Youtube video that shows a patient in front of the clinic. http://www.youtube.com/watch?gl=IN&hl=en-GB&v=KlWWD6hGLzU Treatment Details:Day 1 Jill met the staff and was given a check up and physical therapy to assess her condition and draw a baseline. Day 2 She went through a barrage of tests, blood, ekg, ultrasound, MRI etc. in a facility about a mile from the hospital. Day 3 Went to physical therapy and had her first test dose of Stem Cells. This is a safety precaution to make sure there are no adverse reactions. Day 4 (Today) She will get her first full dose stem cell treatment in the morning and then she has the rest of the day off. Time permitting, we will take a 4 hour tour of Delhi in an air conditioned cab. ($10).The doctors are very positive regarding the potential of the treatment and say there is a good chance that Jill will notice something within a few days.While we are in India we are well connected via Internet and cell phones. Skype works very well here and for those that are not familiar with it. It is free and very easy to download and use. (Skype.com) If you have a web cam it will function as a video phone, otherwise you can use it as a voice over internet telephone.The trickiest part of calling India is dealing with the time Zone differences. India is 12 1/2 hours ahead of the USA,

Best to all,

Steve