“I was totally miserable and I thought you’ve got to start moving Jane!"

18 August 2021

Jane, 64, is retired and lives in south Wales. She has osteoarthritis and Alzheimer’s. She tells us the impact of living with these two conditions, how she’s adapted her life and the importance of having taken the first step to keeping active every day.

“I was diagnosed with Alzheimer’s at the end of 2014, which was around the time I was diagnosed with arthritis in my ankle.”

I injured my ankle as a teenager and it never properly healed, it’s always been swollen and I got to the point where I couldn’t flex my foot for very long, so driving was a problem. It was confirmed I had osteoarthritis.

“I worked in health and safety so I risk assess how I can do things better or easier for my joints.”

My hands ache all the time, so I’ve got every gadget going. I have a new gizmo for opening bottles, tablets and bleach. I’ve also got chubby pens.

When I had the kitchen refitted, I went for single taps with wrist action. Single taps for the dementia and wrist action for the hands. I drop things a lot, so I got a cushion vinyl on the floor so that things bounce.

It’s the frustration that gets to me sometimes. If I’m not quite on the ball with the dementia, if it’s not the greatest of days and I can’t get into a tin of beans because I’ve forgotten that I’ve got a lever to pull the top off with. If my hands can’t do it and then it becomes a disabler and the combination of the two can put me in a spiral.

“I’ve always been active as I’ve got a garden and I would do housework and walk a little bit, but I wasn’t doing enough exercise.”

I certainly wasn’t getting out of puff enough. I didn’t have the confidence to go walking on my own, even on my local hill. I also put on weight.

I was probably like the rest of the country, you do your physio, you get it working and then you stop. And then every time the joints started hurting I was like “oh my exercises”.

I once fell from my stepladder when putting a picture up. I was frustrated that I couldn’t even do that. I took to my chair.

“I was totally miserable and I thought you’ve got to start moving Jane! You know what you want to do, you want to be out walking, do it!”

I started slowly, I went back to the ankle exercises, the heel raises and flexing. Just walking up the road and back.

Over time the walks got a bit easier and so I searched exercise for the over 50’s.

When I was younger, I used to do aerobic exercise videos so that’s what I went to. It was low-impact and sitting down to start off with.

As I got better with the walking and got past having to lean on the chair to do a squat. I got a little trampoline so I’d do aerobics on that, which is really good low-impact.

I started walking a little further afield around the village. Then I thought why can’t I go a bit further?

Again, I risk assessed it, I’ve got the kit, the knowledge, I can map read. It’s got to be a good forecast and I would always tell somebody where I was going.

The walks started off quite short. I went off into the Black Mountains. Then I thought, I can go back to the Himalayas - I want to go and trek again.

I knew I needed to get fit for it because of the altitude and so I upped the walking. It’s a gradual process and important not to give up. Circuits really strengthened my legs, I used to walk and my legs would hurt, but now they don’t because I’m stronger.

“I forget about things if I don’t do something for a while.”

When I’ve done my exercises, I write it down on my exercise log because I can’t always remember if I’ve done it or not.

I have a log since December 2017. If I’m having a bit of a bad time, I can look back on it and it tells me, “you’re doing all right Jane, you can actually do this.” It also stops me doing too much.

I tend to run two, maybe three times a week. It just depends how I feel and what the weather is like.

For my prescription this week, I walked there but I didn’t just walk along the road, I walked across the fields and across the hill.

I have things that I call ‘active’ and things that are ‘mega mega mega’. Shopping I consider ‘active’. If I’m doing something really quite heavy in the garden, digging or cutting the hedges, it’s more than just ‘active’.

“Since moving more, I’m a lot more positive.”

As far as the dementia is concerned, it’s really difficult because nobody knows what your likely decline is going to be. I was an early diagnosis, so I’ve been on the drugs earlier than a lot of people would be.

I’m obviously having benefit from that. But, if had I stayed in the place that I was, then I wasn’t stimulating my mind, any more than I was my body.

I’m also more confident. I now wear my sunflower lanyard whenever I go out. I wear it partly to show people I have a hidden condition, if I do have a bit of an episode. I think it’s important that we are seen to be ‘out there’ with it.

My advice to others with arthritis who want to get active would be:

  • Just do it!
  • Be careful of your expectations - don’t think you’re going to be climbing Everest on day two. You’ve got to build up and you’ve got to take it carefully.
  • Set small and achievable targets. It might be to walk to the shop without getting out of breath or maybe you can only get halfway to the shop at the moment.
  • If your arthritis is really limiting, you might need specialist advice.
  • Make use of online resources and videos.
  • It’s when it becomes part of your life that you are going to carry on doing it. It’s getting something to the stage of being a habit.

Read more of Jane’s story on the Alzheimer’s Society site.

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