Walking is basic to everything we do. Walk around the house. Walk from the car. Walk from the kitchen to the dining room balancing plates of food without tripping. Walk upstairs without a railing. Walk around the neighbourhood or down to the shops.

I miss walking.

I miss being normal. I watch people walking and it seems so easy but when I do it I shake and lose my balance. I used to walk without thinking about it. I liked walking and I used to walk everywhere, all over the neighbourhood. Now I watch other people. They don’t realise how precious being able to walk is.

At first l kept slipping sideways when I was out walking. I would hold on where I could and walk swiftly over areas where I had to concentrate on keeping my balance. The area where there were gaps in the pavement I used to skip over, stepping sideways as if I was dancing, watching I didn’t fall to the side because it was downhill there. Fortunately there was a railing directly afterwards and I’d grab it as if my life depended on it. Frequently I felt it did. When I fell it wasn’t too bad because I do a lot of yoga and people would screech their cars to a halt and rush out to lift me up again. The world is full of people who want to help elderly ladies. The falling wasn’t so bad.

I managed long walks that way but gradually my walks got shorter and I avoided crossing roads in case I fell in front of cars. I kept it up, at first every day, then three times a week, squashing the fear I felt, going slowly over gravelly bits where falling could do real damage. I knew every step of my walk and how to avoid cracks so I didn’t overbalance. I kept walking and concentrated but some days I couldn’t walk because I was scared. I did yoga and marching and balance exercises every day and told myself that was sufficient.

At least I had the car so I could go out to buy coffee and drive to the best places to walk. No more walking to the shops because I couldn’t carry anything back. I had to focus on my walking. I drove to a friend once and she told me the walking problem had happened to someone else she knew. Someone about my age. It lasted three years and since then she hadn’t relapsed but was walking fine. I questioned my friend twice about that. Right, I thought, and toted up the number of years I had left. Instead, after the three-year mark I got worse. I kept walking anyway and kept telling myself it would get better. Maybe it would take longer for me.

Then I almost fell over negotiating a stairway at a railway station. I walked down the stairs but felt like I was falling backward. I kept walking anyway, up and down hills, focussed on my balance till I fell over in the middle of a street and only survived because someone stopped for me. The man who picked me up gave me a lecture on how I’m not as young as I used to be and I should stop walking and let others do things for me. He said that’s what he told his mother when she climbed ladders. I don’t climb ladders, I thought, and who’s going to help me. I have no kids and no sisters and brothers; I’m used to doing everything for myself.

 I was shaky when I walked, if someone greeted me, I’d start shaking and have to grab the nearest lamppost. I spilled coffee whenever I had to get it at meetings. I kept telling myself it would get better but it didn’t. So, I went to a neurologist to see if I could find out what was wrong.

The neurologist told me my cerebellum was degenerating and that I would die within ten years. I didn’t like his diagnosis, you’d think if he was going to tell me I was dying he would do all the necessary tests and not make up things he claimed I said. I may be a woman but my brain works. The psalmist in India said I’d live into my nineties, and I would not do so well in the last twenty years of my life. I preferred what he said over the neurologist especially when the neurologist gave my grandmother problems she didn’t have. I told him she drooled which I do too and I think she had trouble speaking like me but no one knew for certain because she had a heavy Hungarian accent. I didn’t tell him she had trouble walking (she didn’t), he decided she did.

When I said my grandmother was Hungarian, the neurologist was supposed to ask if I was Jewish or Christian because Ashkenazi Jews have all sorts of weird things lurking in their genome but he didn’t ask. Instead he gave my grandmother problems she didn’t have, and said I had a hereditary case of OPCA. Inherited from my grandmother. There was nothing he could do for me. He couldn’t do anything anyway, I thought. I looked it up OPCA on the Internet which he told me to do, and was pleased to note I didn’t have any of the symptoms it said I should have, except the ones that said I had a degenerating cerebellum. The brain scan said that. I decided not to go back to him. I remembered afterwards my grandmother died of cancer way after she was supposed to have died of OPCA and felt vindicated.

The second neurologist I saw asked questions. He tested me for other things and when he heard my grandmother was Hungarian, he asked if I was Jewish or Christian. I trusted the second doctor more; though I suspect he believed the first doctor. He did promise we would find out what was wrong with me. He seemed to do a thorough job but he came to the same conclusion as the first doctor. He did put me in a research project for Ashkenazi Jews and promised to call me if it came to any conclusions.

I walk with a walker but I shake anyway and I have to walk slowly which drives me crazy because I’ve always been impatient. With my old walker I went everywhere and I listened to podcasts to keep me interested (and slow). Then the wheels on my old walker kept turning sideways and going to places I didn’t want to go. I’d wrench it back on the straight and narrow but it wanted to walk into walls and hedges. It would go too fast and eventually I fell. People rushed out from their houses and cars and called the ambulance so I had to play invalid. Even the ambulance people got mad at me. They wanted to make me better but I didn’t need it. I wanted to go home.

Since then I only walk with my new walker if I have company. I’ve arranged for people to come three times a week to go walking with me. I hope to build up my stamina that way and start walking everywhere again, but though I’ve been doing it for four weeks, I still shake when I walk and dread going out. The truth is I’m afraid and this walker is lighter than the old one. The wheels shake and it feels like I can go faster which I have to stop myself from doing. Everyone who sees me says I’m walking fine but I’m scared. What of I don’t know, but I persevere anyway.

There’s so many things I can’t do. I can’t catch public transport and now I can’t drive so I’m dependent on an agency of carers to drive me. It limits where I can go. I can’t go anywhere on weekends. The agency doesn’t employ people. I’m stuck at home unless I walk and I can’t walk anymore either. Even with the walker.

I have workarounds now so I can do things at home. I can take plates of food so I can eat in front of the TV as long as the plates are covered. It takes me three times to walk my food and the cutlery and my vitamins to the table in front of the TV and when I’ve finished I heave myself up, one leg at a time, holding on to the lounge suite, and take three trips back to the kitchen, one with the plates, one with any garbage and my cutlery and one with water and  the vitamin box ready to be filled again for tomorrow. I have covers over my plates (I use Tupperware) in case I fall and spill something.

Everyone wants to help me. I don’t want help. Some people get angry when I won’t let them help me. I once walked home in the rain rather than let someone help me. She kept following me around in her car trying to convince me I needed her to give me a lift. I’m sure she thought she was helping me. I can help myself.

Every day I get up and I check my walking to see if I’ve gotten better. I do my exercises: two minutes marching and balance exercises. I move my arms and shoulders backwards and forwards and I balance on one leg holding the couch. I walk with my walker three times a week. I can balance myself but I’m still slow and I can’t do stairs; up or down. I want to get better but if I’m honest with myself I’m getting worse. Still, the little voice inside me says I’m going to get better and I prefer to believe it. I can’t live like this till I’m in my nineties.