Old pal from Calgary

Just got reacquanited with an email pal from Calgary. I used to be in touch with him regularly some years ago and then lost touch. He is an Indian , settled in Calgary. He has a form of ataxia, except that they have not labelled it yet. He dug out an old email id of mine and wrote. Thanks Internet!

Wish him and everyone else a great holiday season and a wonderful New Year.

December in Toronto

Getting back to normal. Some restrictions on food. Have not yet managed to get the ditetician.
Was planning a visit to India to attend the wedding of my nephew (sister's son). In the event, could not travel since I was unwell. Missed all the fun and games since Indian weddings are a riot. Started working. A few full days so far. Have also arranged for some amount of work to be done from home. Thank heaven for computers!

Been a while

I have not been well for the past several weeks. I started out with the usual cold-and-fever symptoms. Had a lot of breathing difficulties. After 3-4 days of self medication, I had to go to the hospital. They did X Rays and a CT Scan and diagnosed Pneumonia. Apparently some food particles had gone into my lungs. I stayed there for a week. The immediate issue has been sorted out, I think. However, I have to be extra careful in future while swallowing and eating. I have had a visit from the speech pathologist who also monitors swallowing. I am now supposed to meet with a dietician.

Bye for now. Just thought I would update this since I am now well enough to sit at a computer.

stem cells and politics

Just been seeing reports that the newest VP nominee in USA (Sarah Palin) is against stem cell research even though her 4 month old child has Down's Syndrome and may benefit from stem cell research. Maybe it will give him a chance to lead a normal life in future. But who will educate the politicians?

Two people now in China

Two persos who had visited this blog are now in China doing the stem cell treatment for ataxia. They are "mr.desi" and "pansy". Here is wishing them all the best for their stay and treatment.

As for me, life goes on. Missed a few days of working out (ha ha) last week. BP is erratic. Pulsr rate seems high. Guess there is not much one can do.

Saw a new product invented in Israel, which helps wheelchair people walk - must look into that. Things are not yet at that stage, but one must be prepared. If anyone is interested, please look at : http://www.argomedtec.com/

August now - Life Goes on

Just joined an online group started by an ex-China stem cell person. It is http://www.stemcellsforhope.org/

Summer continues. We have finished with all the long weekends.

Work keeps me busy. Also the fitness club. The trainer has finished his work and I am on my own now.

Toronto, Canada - July 25, 2008

It has been an erratic summer - hot some days, cold some, raining a lot.

I have been going regularly to the fitness club. The routine seems to help. I was doing a one-a-week session with a trainer, which has now come to an end. The trainer is a nice guy. He is going back to school to study Alternative Medicine.

Have been working and commuting. It takes me a longer time to negotiate public transport. I have figured out where there are ramps and elevators along the route to avoid climbing. Toronto is a fairly accessible city, and I am grateful for that.

Have been checking my B.P regularly at the gym. It seems to have settled to within normal limits. Earlier, I was hyper-tensive. Maybe the exercising has some benefit on the B.P.

Windsor Canada boy headed for China

I just read this report about a young Canadian from Windsor, Ontario who suffers from FA and is making the trip to China. Wish him all the very best. See the report at: http://www.canada.com/windsorstar/story.html?id=506382b2-33d3-42d3-a6ae-b1dd4e34318b

End of June in Toronto

Nothing great to report, carrying on with my exercising, about 5 days a week. The gym is near where I work and I feel too lazy to commute on weekends.

Over the past month, I have been able to increase the weights on the machines at the gym by about 10-15%. I suppose that is a good thing.

Muscular cramps happen sometimes. Doesnt seem any triggers that I can identify.

My nephew who works in California sent me the link for a new study that they are doing at the National Institute of Health - to check the efficacy of lithium treatment for spino cerebellar ataxia. I have offered myself as a volunteer subject for the study, dont know if they will pick me.

Canada in June

Things have been busy at work. So I have'nt been posting here.

I got an appointment (finally) with a neurologist at the Toronto Western Hospital. First look at the hospital was not encouraging as it overlooks a funeral home. I can understand why they put ATMs in shopping malls, but a funeral home near a hospital seems to be stretching the convenience factor a bit.

Well, the doctor was a competent and encouraging kind of guy. He heard my story patiently and took notes. He looked the last MRI I had, from China. He did a lot of tests to assess the neurological deficits. At the end of it, he did not have much new to offer or suggest. So I came away, with the satisfaction that there is a file somewhere in my name with some information on me. He has promised to call me in once in 6 months, so i guess there will be some monitoring.

Fitness club continues. The exercising seems to help, since movements are easier on those days compared to the days when I goof off.

Toronto is vey hot this weekend.

Cant believe it is May already

Winter seems to be over at last.
I met my family doctor once again and requested him to give me a reference to a neurologist. Unless something is life threatening, it takes a long time.
I have been going to the fitness club most days and spend about 1 hour each day. I can do the exercises only at the lowest resistance levels, but I guess that is better than nothing. I have maintained the improvements I noticed in walking and talking, nothing dramatically new to report. Shall get back to everyone soon.

After 4 weeks in Canada

It has been a busy 4 weeks - have not kept the blog updated. I have been trying to get seen by a neurologist. So far still waiting. Under the Canadian system, your local doctor has to write a reference to the specialist. The last time, I got a reference in November and they had called me for a neurologist consultation in February. I missed that since I was in China. My local doc is pissed. He is making a fresh reference.

Meanwhile, I have also been trying to get into some form of physiotherapy here. Since it is taking forever to get into a neurologist approved programme, I decided to start something on my own. I have joined a local fitness club and start today. For the first few days I will have a personal trainer.

As regards the ataxia and the stem cells treatment, any changes have happened during the treatment in China. I was hoping for continued improvements after I came back, but nothing so far. Maybe regular exercising at the fitness club will jumpstart something.

Beginning March in Canada - March 3, 2008

Landed back in Toronto after a 21-hour flight from India. Travelled alone this time since my son has stayed back in India. Flight was not too bad, though it is too too long. My daughter was at Pearson airport to receive me. Took a taxi back home. Spent the weekend getting the home in some kind of order.

Today is Monday - first day back at work. Colleagues at the office think I am looking a bit better. Went to a nearby chiropractor/physiotherapist and started off with him. Lets see how that goes. I imagine millions of stem cells sitting around in my cerebellum, waiting for their marching orders. I do believe that in order to get full benefit from the stem cell treatment, it is essential to train the brain through an exercise programme.

Update from Chennai , India - Feb 20, 2008

Am in Chennai right now. Met some friends and family. They seem to feel that my walking and talking has improved. I tried but could not arrange any physiotherapy here for a few days. Seems I have to go through a doctor for that and it seems difficult to just walk in without an appointment. I guess the PT has to wait until I am back in Canada next week.

Mission Completed - 5th injection done on Feb 11, 2008

Had my 5th and last injection by IV on Monday, Feb 11, 2008. I walked to the treatment room and back - unlike previous times, when the nurses had wheeled me there and back on my bed.

My doctor stayed with me the whole time - about 45 mins. I was able to discuss some areas of interest. He told me that Beike is 2 Chinese words - Bei for "North" and Ke for "Science". Also that the stem cells are created in a lab not far from the hospital and are transported within 12 hours to ensure optimum viability. The short shelf life of the stem cells means they cannot be shipped to other centres. Other countries would have to invest in laboratories ahead of hospitals. That is, when they decide that they should adopt this technology.

I completed my discharge formalities on Feb 13. Blood and urine tests, an EKG, a lung capacity test and so on. They gave me a discharge report with contact details of the doctor. Also a questionnaire for self evaluation of the treatment and the facilities.

I left Haikou early morning on Feb 14th and am now in India. Plan to leave for Canada in a week or so. Had a fairly comfortable trip despite navigating 3 flights : Haikou-Guangzhou; Guangzhou-Kuala Lumpur; KL-Chennai.

Sunday - Feb 10, 2008 - Preparing for the last stem cell transplant

My fifth and final stem cell injection is scheduled for tomorrow, Monday. Feb 11, 2008.

Avid readers (if any) of this blog - :-) - will recall that I have had 4 injections already in the last 3 weeks - spinal, spinal, IV and spinal. I felt the best improvements in my movements and speech after my 3rd one which was by IV. I mentioned this to the doctors and they are now giving me the 5th one by IV. I hope this will be the right decision. I just felt that one must "listen to one's body".

More tomorrow after the injection.

We celebrated Chinese New Year/Spring Festival with plenty of fireworks and some good food. One of the nurses brought in some amazing dumplings which she had made at home. The hospital is partly shut down, though the PT room is operating. Full complement of staff will return on Wednesday.

Starting the year of the rat

It is New Year in China. It is the start of the year of the rat. The rat qualities we should try and learn from and use in our lives are - versatility, adaptibility, surviving in adverse situations....

We have 3 days off from the exercise routine starting today. Had my 4th injection 2 days ago by the spinal route. There is a big discussion going on here about whether spinal or IV is better. Many feel that spinal is better for brain-related treatments since the stem cells can travel directly to the location. However, IV seems to have worked better for me.

The doctors here mix and match spinal with IV, so that we each receive a few of each.

There are continuing improvements. Speech clarity is improving and has been noticed by friends on the phone. Overall arm/leg strength is better. Balance, though, is still a problem. I shall keep watching this.

4th stem cell injection coming up on Feb 4, 2008

Fourth (out of 5 planned) injection is due to take place on Monday, Feb 4, 2008. Physiotherapy has been continuing since Injection #3. The doctors had an extra day of PT on Saturday since, next week, there will be 3 days off due to the new year celebration.

After the 3rd injection, I have finally started seeing some positive changes.

1. My strength seems to be improving day by day, since I am now able to do more repeats in the exercise room. I am able to do more balancing, more squats etc.

2. My handwriting seems to have improved a bit. I am able to stay on the line now, though the writing is still messy.

3. Ability to clamber up from a sitting position is better now. I am still using my hands to do the job, but the task is a little quicker now.

4. My speech clarity seems just a wee bit better, based on feedback from family and friends with who I have been speaking on the phone.

We are a small group here. One of the earlier patients left last week. A new family from India moved in. There are 3 of us who arrived the same week and are on parallel schedules. So we are able to compare notes and encourage each other.

I am feeling quite good at this stage. Expectations are sky high of course. So the next 2 injections should be crucial. The stem cells, they say, will keep working for about 6 months after we leave, so hopefully, these improvements will continue.

Third Stem Cells Injection Due on Jan 28, 2008

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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 ....