Real stories
'During lockdown, getting out for a walk kept me sane' - Living well with dementia and arthritis
Jane is 64 and was diagnosed with Alzheimer’s disease in November 2014. Jane has arthritis in her ankle and both thumb joints, which cause pain and difficulties with everyday tasks. Jane shares her journey and how she overcame barriers to inspire others to move more.
I grew up in a Lancashire mill town with views of the Pennines. I started walking in the Peak District in my early teens. It was a time before special outdoor wear when you wore old clothes and a pakamac for a waterproof. I learned to map read by osmosis and even acquired a cagoule!
I have always been a keen walker and walked by myself, with groups, and also on walking trips abroad.
Fast forward to my diagnosis of early onset Alzheimer’s in November 2014 and the huge loss of confidence and motivation that went with it.
After my diagnosis, I thought I couldn’t go out walking on my own anymore, which made me sad.
The weight piled on and I started having falls because I’d lost muscle mass and my balance was poor. This led to a total loss in confidence following a potentially nasty fall when attempting some DIY at home. I mostly sat in the chair all day and gave up.
A change of mindset
One day, I was listening to a programme on the radio, which basically described my physical abilities and the fast track to infirmity that I was on. This was the jolt I needed because I knew it was true. At that time, the arthritis in my ankle would affect my confidence.
My ankle would give way under me and I would end up on the floor, which isn’t good for dementia or indeed for anybody at any time.
I had some physio with very simple balance and heel raises and some exercises for my hands to start with. I did them and got the ankle moving more freely.
I searched online for exercises for older people and found Jane Fonda’s over 50’s DVD, which starts with a very basic, low impact routine aimed at improving balance. It started with seated activities then heel raises and exercises leaning on a chair for support.
Getting started with an exercise routine
As confidence and strength increases, the exercises get more demanding.
I quickly started to get a bit of a buzz! Once you get that buzz, it’s easier to carry on.
Don’t forget that exercise also includes housework, gardening and walking to the shop! There are many ways of working that into the day.
I still do a 'strength circuit' once a week. This means doing exercises to build up the weight-bearing muscles. It can include things like squats and lunges and step-ups. That was revolutionary for me!
I couldn’t do it at the start. I couldn’t do the number of repetitions, but I built up to it. The exercise really strengthened my legs, so I fall less and am much more confident.
When I first started getting more active, I also started losing weight, I was just eating less and moving more.
I never tried particularly hard to lose weight I was just more careful about what I was eating. Losing weight also increased my confidence and reduced the strain on my body.
Continuing to move and motivate myself
Since retiring, I’ve had a lot of time on my hands and walking has helped fill my days.
Sometimes I walk in the hills for the pure joy of being out and about, other times I walk for a purpose. Once a month, I walk to my GP surgery to collect my prescription. This takes most of the morning so it’s a double win.
During coronavirus lockdown, getting out for a walk was what kept me sane. Exercise fills time and, usually, I’d meet someone for a socially distanced chat over a garden fence. A triple win!
I have been keeping a record of the exercise I do each day since December 2017. I include the housework and gardening, as well as walking, running and exercises.
My activity notes are a record of achievement and how I have developed since I first started.
I’ve always been driven by targets; it might be to have a target to walk to the shop without getting out of breath or just even getting to the shop. Setting small and achievable targets is great and then when it becomes part of your life you are going to carry on doing it.
If I’m having a bit of a bad time, I can look back on it and say, ‘You’re doing alright Jane, you can actually do that’.
Sometimes I’ll say to myself, ‘So, I didn’t do anything today. Well, I’ve done it every other day, so why beat yourself up about it?’.
Encouraging others to take the first step
My advice for people at the point of getting started would be to just do it. But be careful of your expectations, do not think you will be climbing Everest on day two.
The important thing to get over to new starters who want to exercise is that you have to build up.
Also, if people start light exercising you could have some slight pain and it is okay to ache a bit. You do ache sometimes but it is a good ache. Obviously some medical conditions require medical advice before starting.
If you can do it all the first time you try to exercise, it is too easy. If you fail on the third squat out of ten, you go for four next time.
Start with small and achievable targets
For me, it all started small. Those short routines to move my legs, improve my balance and confidence got me going and I built up slowly. One thing led to another and I kept myself going. Now, I’m even running!
I know it could demotivate people to say 'Jane does this, this, and this'. But there is a story to it. I had given up on the idea that I would have the confidence to go out walking on my own.
You have got to build up and take it carefully. Do not expect to be able to do everything on the first try. You can work up to it.
Staying active when you have dementia
If you or a loved one has dementia, physical activity can improve your quality of life. Find out how to stay active at any stage of dementia.
Suzanne Urwin
saysJane You have inspired me, i used to be like you and walk every day apart from my job as a Nurse. I am now 61 and have chronic arthritis in both my ankles, but have no other health problems, so im lucky really. I have just come back from a walk with my 4yr old boxer, yes it hurts but i feel much better for doing it, I have started! I still work part time and look after my grandkids however need to walk every other day
Teresa Stock
saysA fantastic story and I'm sure it will help and inspire many people.
Christine Marsh
saysWhat an inspirational story Jane. Well done and keep it up!
Helen Gunn
saysI have so much admiration for you Jane. I have worked with people with dementia and I knew how devastating the diagnosis was for them. It must have taken so much determination and strength to get motivated to do this. It is awe inspiring! Wishing you all the very best. 👍xxx
Anne D
saysAmazing dedication. Well done Jane you and your family can be proud of your achievements 👏
Barbara Schaefer
saysfantastic achievements. Can you write a little more how you see your Alzheimers affected by your exercise regime, if at all?