Aarthi Sampath has a condition known as limb girdle muscular dystrophy and uses a wheelchair. She shares her challenges in coping with activities of daily living and offers useful tips for those in a similar condition.
Life is a challenge for everyone, and I am no exception. The moment I was diagnosed with limb girdle muscular dystrophy, challenges started creeping in every step of my way.
EFFORT TO WALK
With the passing years, my muscles started weakening and even the therapy didn’t help me much as muscles tend to get weak with age. Initially, I used to walk on my toes with the support of the walls. But it was increasingly getting difficult because for every step I had to put my entire weight on one leg and then shift it to the other. I used to fall frequently and mostly in the restroom, or while cooking or cleaning, and I had to wait for someone to lift me from the ground. Once I was about to fall in the restroom, but held myself back by clinging to a tap. I screamed for help and my mom came running from the backyard and with great difficulty put me on the chair. Yet another time I slipped and fell as I came out from the restroom. I got badly hurt on my forehead.
So every time I have to use the restroom, I have to prepare myself by relaxing my muscles which will enable me to walk steadily without falling. I have to always keep in mind that I cannot move as I wish like normal people and before every movement I must spend some time for initial preparation. For me it is an effort even to walk four steps to the restroom because my muscles get tired and I feel very nervous. I have to keep my muscles relaxed for every bit of exercise and I need to take rest after every step I take. Even with proper therapy, tightness of the muscles makes walking difficult as the muscles are often heavy and tired. I can’t go out for a movie or to restaurants, to the temple or to the beach because of my disability to walk or to sit or even stand for long hours. As all my limbs are affected, I can’t lift anything heavy. I have to depend on my mother to even comb my hair, and I cannot bend to pick up anything from the floor if I drop anything.
LIBERATION IN A WHEELCHAIR
But after I have started using the wheelchair, I feel more free to move around, and though it has its pros and cons, I feel safer to move around without the fear of falling. With time, I have learnt to make small adjustments to help myself. My mom helps me to alight from bed. I adapted small tricks to shift myself from cot to commode, after my mom wheels me into the restroom. She leaves me there, so I can clean myself. After I have my bath, I call out to my mother and she wheels me out. Then she helps me to dress. She pulls me from the wheelchair to my bed and from the bed again I shift myself to the motorised wheelchair. So this is the daily routine and it takes me one and a half hours to get ready.
The whole day I am usually in the wheelchair, but it is better than when I was trying to walk around. I used to be depressed then as movement was a problem then and I couldn’t go out and get to meet people. Now, with the wheelchair, I feel happy to move around and enjoy every bit of my life, even though for some tasks l still have to depend on others like combing my hair or even dressing up or going out. Before I started to use the wheelchair, I could not stay alone at home as I needed help always. But now I can manage to stay alone, for some time at least. But being wheelchair-bound, my muscles often feel tired. So, after a long day in the wheelchair or even after waking up, my mom gives me a slightly relaxing therapy after which I can shift myself to the wheelchair from the bed.
The days I feel down and depressed, I rejuvenate myself by listening to music or watching movies to help me be calm.
7 TIPS TO STAY ACTIVE IN A WHEELCHAIR
- Never get discouraged and always be on the move.
- Never discontinue any task that you perform as it helps your muscles to be active. If you discontinue any activity even for a month, you can never attempt it again.
- Problems naturally differ from one person to the other, but in general we should do small physical activities to keep muscles active, like knee breathing to avoid buckling of the knee and fall. You can keep a towel roll or pillow under your knee and press your knee on the towel.
- Try to do daily activities as well as breathing exercises which are refreshing and help lungs to function better.
- It is also important to be cheerful, and accepting your desease will lessen the stress levels.
- It is also therapeutic to interact with other people with disabilities and share one’s experiences and problems as it will improve your confidence and will help you face the world with ease. It feels better even on your bad days when you have people to comfort you.
- If you are walking, ensure your home is disabled friendly like grab bars in restroom and anti skid flooring. Avoid door mats in the house and do knee exercises to avoid buckling of the knee.
Do you have other tips you would like to share? Write in the comments below:
