Battling FA head-on.

I am back with an article after a gap of three years. I was waiting for the right time to write and I believe now is the time for me to tell you about what has gone on in my life. What I am going to tell you has changed my life for the better.

I still have Friedreich's Ataxia (FA) and there are numerous times when I do feel down and frustrated. The thing is that you cannot just live the rest of your life feeling sorry for yourself. When I look around and see people who don't have a leg, arm, eye or something else, I feel so lucky that by the grace of God I am fine. What FA has taught me is never to give up in life, have a strong willpower and keep going on. One has to hope for the best and give it your best shot.

Now I will move on to what I feel has changed my life. I have been working out in the gym for over two months now and it has brought about a refreshing change. The main reason for that is having a very hardworking, caring and dedicated team at the gym. The people are really taking an interest in my progress. I have been doing all types of strenuous exercises for my back, shoulder, chest and legs. Also including weight training and floor exercises for my abdomen. The other thing is also meeting various people in the gym and having a very nice atmosphere which always makes a big difference.

I am continuing swimming and am doing it now wearing a life jacket to make more use of my legs. I would like to mention my trainer and physio, who is absolutely brilliant. Helping me out in doing more exercises in the pool for my legs and also using the bike in the gym have helped me enormously. Plus having me do exercises for my abdomen and asking me to do various wheelchair exercises. I have also been told to sit without any support for 30 minutes to improve my balance. I feel when someone does so much in a very pleasant and caring manner it means that 50 percent of your work is done.

I would also like to mention the changes I have felt that have occurred to me as a result of these exercises. I used to do swimming before and was doing up to 30 laps primarily with the use of my hands. Now I am swimming with a life jacket which has vastly improved in the movement of my legs. The various exercises in the pool are all geared towards using my legs more. Similarly, in the gym, when I started doing the recumbent bike it was frustrating since I could not get my legs moving but that did not mean I gave up. I continued to work hard and now I am able to do the bike without any help.

Doing the exercises for my abdomen has also improved balancing myself from side to side. I have been sitting on the edge of the bed every night for half an hour without any support. This has greatly improved the posture of my body and also my balance. The visible change occurring in my legs is being able to keep them straight while sitting in the wheelchair where as before they used to be going in different directions.

As you can see there have been considerable changes in my physical being which have made me more fit, fresher and above all more independent. Another example of my being independent is being able to sit down in the car from the wheelchair by myself, emphasizing the strength of my legs. I know there is still a long way for me to go but I know I am on the right track. I am totally focused and determined on achieving my long term goal of walking.

There is, of course, a lot of hard work involved, which includes sacrificing many things. I am exercising six days a week, which includes three days of swimming and three of gym and sometimes even more. Coming straight from a long day at the office for a two-and-a-half-hour workout at the gym is not easy. It requires a lot of determination, effort and dedication to the job at hand. The best thing is that I am really enjoying what I am doing and look forward to every new day. I know that the rest of my life has virtually ended with this schedule of mine but I know this hard work I am doing is going to help me immensely in the long run. Having FA has definitely made me stronger and has infused in me a spirit of "never give up."

This has resulted in my losing five pounds last month, which is very encouraging. This doesn't mean I am going to relax and take things easy. I need to keep it up and work towards my goal of being able to walk again. Walking again is my top priority and all my efforts are geared towards it. Diet control is another thing which has been instrumental in my losing weight. I have greatly reduced having fried stuff including fast food, concentrating more on salad, fruit and vegetables. Another new thing started by me is having oil massage once a week for my legs which greatly relaxes me. I have had heart and echo tests recently and everything is normal.

So people, you can see the changes that have come in my life. Things change as life goes on and thank God changes have improved me.

I would like to end by saying that this change has vastly improved me and I can feel how much more mobile and independent it is making me. For example, I can make my way to my bathroom and get onto the bed myself. Before it used to be difficult for me and even now my parents do want me to take help in case I get hurt or fall down. I know people are concerned for my safety but I do want to get independent and do things by myself. The satisfaction of doing something on your own is immense. I am fully committed to my goal of walking again and I know with the help I have around me, I will be successful.

Asad Rafi
Pakistan