Living with Ataxia - site

I am providing a link here. Please do join this group.

http://www.livingwithataxia.org

Toronto in Summer

It is early summer here. Everyone around is wearing shorts. I cannot wear them since I have lost a lot of weight and would look quite funny. A couple of people had visited this blog and left comments. Since they had provided email addresses, I could get back to them.

I am getting more regular help from a healthcare worker. Trying to be as independent as possible.

I met a couple of people in this area with similar ataxia conditions. Met 1-2 of them and had coffee. Also joined a Facebook group called Internaf.

One more spring time in Toronto

It is mid April. This winter has been slow to leave. It has been officially spring for a month but it is still ccld and windy outside. Hopefully things will soon change.

Things have been busy where I work. One of my fellow workers quit so things have been busier. The "season" normally lasts till end June.

Visited the neurologist at Toronto Western last month. Asked him about a new drug I have been reading about - Riluzole. He is nsupposed to investigate and let me know. I guess I will have to remind.

I have been getting the services of a personal healthcare worker off and on. He helps me with my day to day stuff a little bit.

January in Bangalore

I made a long delayed visit to India. I was flying after 3 years, so was quite nervous about it. I flew Lufthansa from Toronto to Bangalore via Frankfurt. Used the airline wheelchair service throughout which was quite efficient, though there was a lot of waiting at various places. I get back on Feb 10, so have to repeat the process all over again.

India is difficult for someone with a disability. There is no concept of accessibility. Some of the newer buildings have ramps, but one cannot use the sidewalks for wheelchairs.

Nothing medical on this trip. Hope one has no need to go to a doctor.

Visit to Neurologist in Toronto

Today was a grim winter day. But I had an appointment with the senior neurologist at Toronto Western Hospital. His name is John Wherett and I have earlier consulted him in mid 2008. This time, it was more a routine follow up visit.Also, I wanted to find out his views on Riluzole, the drug that is supposed to work for some ataxia symptoms.

Well, I did not get a prescription straightaway, but he promised to find out more and maybe I could be a suitable guinea pig. Shall keep you posted.

Musings from Toronto and the Chantix experiment

It has been a while. I just realised that there are some reactions to my postings. However, I do not know how to get back to them without an email address. I am geting quite dependent on the power chair. I use it extensively outside the house. Since I do not have a car and have stopped using public transport, the chair has become my main means of transport. I thank the city planners for making Toronto fairly accessible.

One thing I must report is my failed attempt at using Chantix for my ataxia symptoms. I have been reading some reports about the drug helping symptoms. So I got a prescription from my doctor and tried it. Unfortunately, it had a very adverse effect on me. I felt quite unwell with a complete lack of balance. So I stopped after 2 days. Well, nothing ventured, nothing gained.

More about the Chair

Well, I have had the chair for a couple of months now. Must say it is easy to get used to. The only fear is that the little use of normal walking will now be given up. I am sure things will gradually deteriorate from disuse. I had a flat tire last week and had to wait 2 days while it was getting fixed. Now I have requested for hard wheels, the kind that will not puncture. Let us see how that goes.