What’s it like to live with postural problems?

Many people experience changes in their posture during the course of Parkinson’s. For some, changes may be subtle, such as developing a slight stoop, but for others they become pronounced, forcing them into extremely painful positions. In this blog, we hear from 4 individuals with Parkinson’s who have noticed changes in their posture.

Silvia and Paul

Unusually, couple Silvia and Paul both have Parkinson’s and both experience problems with their posture. They live in Huddersfield and have 4 children aged between 8 and 14.

Paul:

"I was diagnosed around 4 years ago and although I only realised it later, changes in my posture was one of the first signs of the condition. Now when I look at photos from before my diagnosis I can clearly see the changes but I was totally unaware of them at the time.

"My main problem is leaning forward when I’m walking and it is getting more pronounced. I am conscious of it so I do my best to correct it. I am waiting to see a physio and I hope they’ll be able to give me some tips and exercises that I can do to improve my posture.

"I’d say that my posture is the thing about my condition that bothers me most regularly. I don’t like looking like a stooped old man and I think it affects my ability to do simple things like get up from the sofa. I went to my children’s school recently and had to sit in a really low seat when I was speaking to one of the teachers. I really struggled to stand up afterwards which was embarrassing and frustrating."

Silvia:

"I’m originally from Brazil and I vividly remember my mother scolding me about my poor posture as a child and asking my PE teacher to improve it. It’s something I’ve always struggled with and I wonder whether it was a very early sign of my Parkinson’s.

"I was only diagnosed this summer so I am still in the early stages but my posture is something I am very aware of. When I concentrate I can correct it but when I relax I stoop and shuffle along.

"I’m only 53 and I hate looking like an 'old lady', it makes me feel very self-conscious and I don’t like to seem older than I really am.

"I try and do exercises to help improve my posture and they do make a difference. My Parkinson’s nurse recommended Pilates recently but I haven’t managed to go yet."

Jenny

Jenny is 72 and has been living with Parkinson’s for 10 years.

"I have always had very rounded shoulders which I think may have been caused by my being left-handed as it meant that I had real problems writing at school and had to adopt odd positions. More recently I’ve been told that have a 'dowager’s hump', which isn’t a particularly flattering phrase, so it’s something I am very aware of.

"My neck and shoulders do get very painful which I think is partly due to my poor posture. I also often get involuntary movements in my head and neck which I am told can cause the pain.

"The thing that I find most helpful is exercise. I used to practice Pilates and it has helped my posture and core strength enormously. Unfortunately, I’ve had to give it up since I got my apomorphine pump because it became too difficult to do all the exercises with worrying about disturbing the pump and tubes but I still make sure I exercise regularly.

"Having received encouragement to work on my posture and do exercise that I also enjoy, I continue an exercise class weekly and also go to the gym weekly. This benefits me socially and is indoors, as are daily exercises for neck, shoulders and balance.

"It can be difficult to keep motivated with exercise, especially when you first start and it can be easy to get discouraged. The results are not immediate, you may even feel worse when you first start, but it’s so important to keep at it because in the longer term it makes such an enormous difference."

Darryl

Darryl was diagnosed at 50 and has been living with Parkinson’s for over 20 years.

"I was stooping and bending and getting worse. I was finding that I was having trouble walking and suffered with backache. It was getting increasingly annoying and I found it depressing being inactive. I thought that these postural problems were just part of the condition, no one had told me that it didn’t have to be this way.

"But then I saw a Parkinson’s physio, she was a breath of fresh air, and I realised that I could fight against these problems. She used stick figures to show me the exercises and I recognised if it was going to have an impact it was important that I was willing and determined.

"For me exercise is key, I have done not just one thing but lots of things, such as yoga and Pilates that involve moving, twisting and stretching. I also have used the Wii Fit now for over 8 years to do regular exercises alongside monitoring my weight, as I struggled with weight loss. The Wii Fit has various fun activities where variance is important, from balance exercises to boxing, tennis and golf.

"Now my posture is straighter, not completely straight, but I no longer have backache and can walk around more easily and enjoy my allotment again.

"My advice to others is to try everything and don’t be ashamed to admit when you can’t do things. Parkinson’s is scary and affects me, my friends and my family, but I believe it’s your body, so with some things you can try and take control."