The 3rd out of 5 - injection is scheduled for Monday, Jan 28, 2008. This one will be an IV (IntraVenous) transfusion unlike the earlier two which were in the spine. This one will be less tiresome. Though the same rule of "do-not-drink-or-eat" for 1 hour before and 1 hour after still applies. One does not have to lie still for 4 hours+.
I have been looking for signs of improvement. So far, nothing significant to report about gait, speech, etc. However, I think there is an improvement in general muscular strength, judging by the performance in the exercise room during the last few days.
On the non-medical side, I have started Chinese lessons with a high school student on vacation.
Sunday, January 27, 2008
Wednesday, January 23, 2008
Second Stem Cell Injection
Had my second injection yesterday. The procedure passed off more peacefully and efficiently than the first time. Stayed in bed, flat without pillow, for 4 hours. Listened to Frank Sinatra on the IPod.
No fever or body/leg pains like last time. So I have started today on a good note. Just came back from the morning's physical therapy. Did the exercise cycle, chair with leg weights and balance exercises - side to side as well as front to back.
No fever or body/leg pains like last time. So I have started today on a good note. Just came back from the morning's physical therapy. Did the exercise cycle, chair with leg weights and balance exercises - side to side as well as front to back.
Tuesday, January 22, 2008
Jan 23, 2008 - Second Stem Cell injection
Having my second spinal injection today.
Last week, a lady from USA and a young man from Mexico checked in. This floor is now very diverse and multi-cultural. Seems like globalisation has caught up with curing illnesses.
Last week, a lady from USA and a young man from Mexico checked in. This floor is now very diverse and multi-cultural. Seems like globalisation has caught up with curing illnesses.
Wednesday again - Jan 23, 2008 - 2nd stem cell
Today is my second spinal injection. Not looking forward to it, since the last experience, while not painful, was rather uncomfortable. Anyway, one must do what one has to do, so I am not whinging.
This floor at this hospital, which seems to be reserved for foreigners, has had 2 more additions this week. A Mexican young man with a spinal injury and an American lady with MS. So we have 2 MS, 2 Spinal Injuries, 1 Cerebral Palsy and 1 Ataxia (me) on this floor. Everyone is on smiling and visiting terms, and discounting the reasons why we are all here, we are quite a cheerful bunch. Illness was always global, now the cures are becoming global.
See you guys later.
Saturday, January 19, 2008
First Stem Cell Injection and the Next Few Days
I had my first spinal stem cell injection 4 days ago - on Wednesday. The procedure was done under local anasthetic and was not really painful, but I was quite terrified all the time.
My bed was wheeled from the room to the treatment room. There, they swabbed my back with alcohol - felt very cold. An IV line was set up on my arm. An anesthetic injection was given on the back. Then they kept prodding and searching on the backbone - to find the sweet spot, I guess. I had an oqxygen mask on. My doctor and translator were in the room and tellinhg me the actual process would take 15-20 mins. I could feel the actual needle going into my backbonme, but there was no pain. It was over in reasonable time. The oxygen mask was removed. The IV bottle was allowed to run out.
I was wheeled back to the room. Told not to drink for 1 hour. Also lie flat on my back, without a pillow, for 4-6 hours. I was told I would get a head ache if I lifted my head.
I lay around, feeling rather uncomfortable. The nurses kept checking BP, pulse etc. After 2 hours, my legs started hurting. Finally on hour 3, I took a pain killer. Things then settled down.
By evening I started running a fever, which lasted for about 24 hours, but was controlled by medicine.
From Thursday onwards, I have been going for 2 sessions of 45 mins each of Physio Therapy - cycling, wrist exercises, balancing, stair climbing and so on.
Honestly, I cannot say that miracles have happened after my first injection. Perhaps 1 injection and 4 days is too little to start seeing any changes. I have 4 more injections to go + lots of Physiotherapy, so I am quite hopeful.
As to the hospital routine, there is a doctors's group visit at 8.30 am. Physio at 11 am and 4 pm. No physio on stem cell injection day and Sundays.
BTW, this site (www.blogger.com) is only partially working in China. It allows me to make posts, but I cannot see the blog. So I guess I will keep posting in the hope that it is actually getting published. I think the China Stem Cells site is picking up this blog, so until last week, I was able to see it there.
My bed was wheeled from the room to the treatment room. There, they swabbed my back with alcohol - felt very cold. An IV line was set up on my arm. An anesthetic injection was given on the back. Then they kept prodding and searching on the backbone - to find the sweet spot, I guess. I had an oqxygen mask on. My doctor and translator were in the room and tellinhg me the actual process would take 15-20 mins. I could feel the actual needle going into my backbonme, but there was no pain. It was over in reasonable time. The oxygen mask was removed. The IV bottle was allowed to run out.
I was wheeled back to the room. Told not to drink for 1 hour. Also lie flat on my back, without a pillow, for 4-6 hours. I was told I would get a head ache if I lifted my head.
I lay around, feeling rather uncomfortable. The nurses kept checking BP, pulse etc. After 2 hours, my legs started hurting. Finally on hour 3, I took a pain killer. Things then settled down.
By evening I started running a fever, which lasted for about 24 hours, but was controlled by medicine.
From Thursday onwards, I have been going for 2 sessions of 45 mins each of Physio Therapy - cycling, wrist exercises, balancing, stair climbing and so on.
Honestly, I cannot say that miracles have happened after my first injection. Perhaps 1 injection and 4 days is too little to start seeing any changes. I have 4 more injections to go + lots of Physiotherapy, so I am quite hopeful.
As to the hospital routine, there is a doctors's group visit at 8.30 am. Physio at 11 am and 4 pm. No physio on stem cell injection day and Sundays.
BTW, this site (www.blogger.com) is only partially working in China. It allows me to make posts, but I cannot see the blog. So I guess I will keep posting in the hope that it is actually getting published. I think the China Stem Cells site is picking up this blog, so until last week, I was able to see it there.
Tuesday, January 15, 2008
Today is the first Stem Cell Injection
Today - Wednesday - is my first stem cell injection. I have been given a tip sheet to make the experience useful. No drinking and eating for 1 hour before and 1 hour after. The spinal injection will be given under local anesthesia. Afterwards, I am supposed to lie flat, not raising my head, for 6 hours. If I move around, it seems I will get terrible head aches. I am reasonably apprehensive. So wish me luck.
Tuesday
Did routine blood tests and ECG, MRI yesterday. Today started Physical Therapy and Occupational Therapy. Will give details soon.
Sunday, January 13, 2008
Am now in Haikou, Hainan
Arrived by air from Guanzhou. Hainan is an island, so the only way in and out is by air. Weather is summery, around 25 celsius. I should imagine it gets very warm in summer. Got picked up at Haikou airport by 2 reps of Beike - both of whom would speak English. We drove on an excellent road for 30 minutes to reach the hospital. Beike seems to have leased out part of a 600 bed multi specialty provincial hospital. Couple of young doctors came and introduced themselves (the main doc does not speak English - the other one has to translate). It seems they will do some routine blood work etc on Monday. First stem cell infusion will probably be on Wednesday.
The room they gave me and my son has most mod cons - A/C, TV, DVD, Fridge, Internet in room. There is a small living room type area and a large washroom. Plus a balcony/corridor just outside. There is a small restaurant on the campus. We had breakfast and dinner there on Sunday.
Someone from the hospital escorted us + 1 more person to a big shopping area (about RNB 21 = US$3 each way by taxi). We bought some food there - milk in cartons, breakfast cereal and so on. Also needed an adaptor plus for our laptops.
BTW, the electricity is 220 KVA, not 110 KVA like in US/Canada. Laptops work within a range of 100-240, so there is no problem. Other appliances like kettles, toasters, etc, I guess it is best to buy locally.
Thats it for now. Shall connect later.
The room they gave me and my son has most mod cons - A/C, TV, DVD, Fridge, Internet in room. There is a small living room type area and a large washroom. Plus a balcony/corridor just outside. There is a small restaurant on the campus. We had breakfast and dinner there on Sunday.
Someone from the hospital escorted us + 1 more person to a big shopping area (about RNB 21 = US$3 each way by taxi). We bought some food there - milk in cartons, breakfast cereal and so on. Also needed an adaptor plus for our laptops.
BTW, the electricity is 220 KVA, not 110 KVA like in US/Canada. Laptops work within a range of 100-240, so there is no problem. Other appliances like kettles, toasters, etc, I guess it is best to buy locally.
Thats it for now. Shall connect later.
Thursday, January 10, 2008
Its Friday, Am in India
Left Toronto on Monday. Flew all Tuesday. Reached Chennai in South India early Wednesday. Leaving tonight for China. I will travel via Kuala Lumpur and Guanzhou to reach Hainan. I will get to see many new airports on this trip.
Before leaving Canada, I had an email discussion with a stem cell researcher in USA. He is not connected with this treatment and cannot endorse it. However, he did give me some inputs on the questions I should ask the doctors in China. It was reassuring that I did not hear any horror stories. I am really hopeful that the China approach will get accepted by Canada/USA before long. In USA, they are waiting for a new administration post-Bush. And in Canada, they are probably waiting for the Americans to say yes.
After my treatment is done (with good results, I hope) - I shall post the questions I asked and the answers I received. Each situation is unique, and some of the things may not be relevant to others, but maybe there is someone out there to whom it will mean something. If anyone who is reading this wants something clarified, I can be your mouthpiece.
Bye for now. Next posting will probably be from Hainan.
Before leaving Canada, I had an email discussion with a stem cell researcher in USA. He is not connected with this treatment and cannot endorse it. However, he did give me some inputs on the questions I should ask the doctors in China. It was reassuring that I did not hear any horror stories. I am really hopeful that the China approach will get accepted by Canada/USA before long. In USA, they are waiting for a new administration post-Bush. And in Canada, they are probably waiting for the Americans to say yes.
After my treatment is done (with good results, I hope) - I shall post the questions I asked and the answers I received. Each situation is unique, and some of the things may not be relevant to others, but maybe there is someone out there to whom it will mean something. If anyone who is reading this wants something clarified, I can be your mouthpiece.
Bye for now. Next posting will probably be from Hainan.
Saturday, January 5, 2008
Some thoughts for Saturday
First full day of travel related activity. Did some last minute shopping. My daughter used her handycam to record some stuff about me. I guess it may be useful to get a pre-treatment record on film.
I would like the medical establishment in Canada to take a serious look at the stem cell treatment. Right now, they do not support this treatment. In fact, it is difficult to even discuss this with a competent neurologist since this is not an emergency which can make one jump the queue. I have tried getting a neuro's opinion before my trip, but my appointment is for February 2008. By that time, hopefully, I should be well in the treatment phase.
I am hoping that, over a period of time, the medical establishment in Canada will take a look at the procedure. This will take some time and effort and I am willing to do my bit. I am hoping that this record will add to the growing evidence in favour of stem cell treatments.
More soon.
I would like the medical establishment in Canada to take a serious look at the stem cell treatment. Right now, they do not support this treatment. In fact, it is difficult to even discuss this with a competent neurologist since this is not an emergency which can make one jump the queue. I have tried getting a neuro's opinion before my trip, but my appointment is for February 2008. By that time, hopefully, I should be well in the treatment phase.
I am hoping that, over a period of time, the medical establishment in Canada will take a look at the procedure. This will take some time and effort and I am willing to do my bit. I am hoping that this record will add to the growing evidence in favour of stem cell treatments.
More soon.
Friday, January 4, 2008
Busy Friday
Last working day at my place of work. I am taking 8 weeks off. My co-workers and friends there know I am off to China next week. They know it is for some medical treatment. Everyone wishes me well. I promise to keep them informed of my progress.
Planning to make my good bye telephone calls and get the packing done over the weekend. Flying out Monday, Jan 7th 2008 to India. Plan on spending a few days there before flying to China.
Will update the info tomorrow. Playing with colours and fonts on this one. Hope it does not end up looking weird.
Planning to make my good bye telephone calls and get the packing done over the weekend. Flying out Monday, Jan 7th 2008 to India. Plan on spending a few days there before flying to China.
Will update the info tomorrow. Playing with colours and fonts on this one. Hope it does not end up looking weird.
Thursday, January 3, 2008
Getting Advice and Ideas
The last few weeks have been very busy. I have been planning my journey to China.
First, I contacted Beike Biotech in Shenzhen, China, to get information about the treatment and the cost and the likely dates. Have been trying to get in touch with some of the people who have undergone the stem cell treatment for ataxia.
The Beike staff were helpful in arranging two conversations on the phone - one is a lady from Western Canada and the other is a gentleman from Scotland. They had taken the treatment about a year ago - in late 2006. They were very enthusiastic about the treatment and the positive effects it was still having on them, 12 months later. I must tell you that it was pretty powerful to listen first hand to these people, since they had similar problems in the past, had taken the decision to take the stem cell injections and were feeling the benefits even after a year has gone by.
The doubts in my mind were addressed to some extent by talking to these folks. I realise that each case is unique and no two ataxians are alike. Since there is so much diversity in the condition, I am sure the impact on each person would be also different in each case.
At this point, let me just say thanks - to the Beike people who arranged the calls, and to these two new friends who were so helpful and positive with me.
I have now got a visa for China at the consulate in Toronto. Beike suggests that one companion should go along. I am taking my 18-year old son. I am hoping that, for him, the dreariness of being in a hospital for 5 weeks will be offset by the wonder of being in China. As per the itinerary, we should be there during the Chinese New Year, and that should be a real experience.
More later ....
First, I contacted Beike Biotech in Shenzhen, China, to get information about the treatment and the cost and the likely dates. Have been trying to get in touch with some of the people who have undergone the stem cell treatment for ataxia.
The Beike staff were helpful in arranging two conversations on the phone - one is a lady from Western Canada and the other is a gentleman from Scotland. They had taken the treatment about a year ago - in late 2006. They were very enthusiastic about the treatment and the positive effects it was still having on them, 12 months later. I must tell you that it was pretty powerful to listen first hand to these people, since they had similar problems in the past, had taken the decision to take the stem cell injections and were feeling the benefits even after a year has gone by.
The doubts in my mind were addressed to some extent by talking to these folks. I realise that each case is unique and no two ataxians are alike. Since there is so much diversity in the condition, I am sure the impact on each person would be also different in each case.
At this point, let me just say thanks - to the Beike people who arranged the calls, and to these two new friends who were so helpful and positive with me.
I have now got a visa for China at the consulate in Toronto. Beike suggests that one companion should go along. I am taking my 18-year old son. I am hoping that, for him, the dreariness of being in a hospital for 5 weeks will be offset by the wonder of being in China. As per the itinerary, we should be there during the Chinese New Year, and that should be a real experience.
More later ....
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