Walking with purpose

About Parkinson's and health Symptoms
1

 

 

I have Noticed when i am walking at distance, i.e i am walking too the shops 200 yards away or so  rather than short steps to the other side of the room, that i tend too veer too the left, a sort of swerve, as if i am walking on the side of a hill but not in a straight line but trying too keep straight.

I am told i have after my dat scan i had patchy uptake from both sphere's of my brain(left and right) but i am most effected on my left side of my body, but i also have tremor on left and right hands more so in the left and first noticeable in my left hand. and all my life i have been left handed doing tasks with my hands and my dominant eye is also my left eye.

So does anyone else 'swerve the curve' when walking lol and has it been the dominant left or right handed? effected?.

 

 

2

hello sea angler, 

 that's interesting. My parky problems are worst on my right side and I'm righthanded. Is there any association or is it all random? 

I do something a little bit like your swerve thing. My steps are shorter on my right side so I can end up turning a bit to the right when I'm walking and bumping into my partner and stepping on his heel. He's very patient with it - he could walk on my left side instead, but he puts up with it so that when I freeze up he can unfreeze me by taking my right arm or hand. 

3

mine pd is on the left and i swerve towards the left.

 

BB x

4

 

Hi

Perhaps there is something in it? I'm not sure i've experienced freezing yet? i sometimes i feel have too initiate the first step as if my feet are tied together  I want too stride but its like a dance step, right leg forward left leg too right leg and when i meet a corner or turn it is awkward. I read somewhere something about we are trying too achieve symmetry or the mind is?.

5

I don't have proper PD and I got freezing early on without much rigidity, so I could be a totally unreliable comparison, but that sounds sort of like how I was a few years before the obvious brakes slamming on/stuck to the floor stuff started up. I hope it takes it's time if that's what's happening.  

I'd be really interested in any stuff about symmetry and PD and the mind and sense of self. When I'm not having a bad spell and I focus in on my less affected side, I feel more like who I used to be.  

6

 

Hi

Google doesn't seem very helpful and i cant find anything  searching about symmetry on PDUK'S website sadly.

But a tiny bit here

"A focus is placed on improving the symmetry
of the body and posture in order to provide a
stable starting point for all movements. This
in turn helps to improve balance"

https://www.parkinsons.org.uk/sites/default/files/publications/download/english/fs41_conductiveeducation.pdf

7

that's a really good article - would love to try something like that. Thanks!

8

I’m not exactly sure what is meant by symmetry in this thread, but there has been no research done that focuses specifically on symmetry. Are you referring to difficulties with balance? We know that people with Parkinson’s are generally affected more on one side of their body than the other, which can affect your balance.

The information sheet in this thread is very old and out of date. Thank you for highlighting that it's still available, we're now taking down from the website. If you are interested in complementary therapies, you may find our booklet useful. This gives more up to date information about conductive education, as well as various other therapies that people have told us have helped to maintain or improve balance. Physiotherapy may also be helpful.

Thank you.

9

 

Nope Alison Not Balance, if i was unbalanced i would simply fall over??!!. But thank's anyway I'm sorry i cant make myself clear these days what with having Parkinsons, I had hoped too refer too the internet for information, but alas grainy drawings showing posture and the sufferer trying too stay Symmetrical cannot be uploaded too this forum too explain what i was trying too convey which may of been Helpful.

Thank you.

10

Sorry for long post

Alison,

It's a shame PUK is taking down that information sheet. It's so interesting and positive, even if you feel it's out of date. Some websites keep an archive section for material like that. 

I don't want to speak for Sea angler, but when I'm talking about asymmetry, I'm meaning that in parkinsons (and lots of parkinsonisms), it's often one side of the body has symptoms first and worst, and this is related to changes on the opposite side of the brain.

As well as the asymmetric physical changes, I'm interested in the changes to thoughts and feelings this causes. Our left and right brain do different things in terms of feeling and thought, and from (dodgy) memory, there's writers and researchers, (Damasio? Le Doux?) saying that a lot of our feeling and thoughts are in our bodies as well our brains, and that it is a two way thing, not a top down system with the brain totally in charge.

The more recent work on empathy and mirroring is saying that we experience empathy in our bodies too. When we see someone injured in the arm, there's a change in the part of our brain that would be affected if it was our arm that was hurting and there are physiological changes in our arm too.

Some people with parkinsons talk about feeling a flatness or clumsiness in our emotions, and changes to our sense of connection to others -  a struggle to understand others' feelings and thoughts from tone of voice, facial expressions and other movements. Some researchers are saying this may come partly from this mirroring process not working so well. If you have facial masking, or you don't make the hand gestures you used to, the muscles of your face and arms won't physically respond in the same way to others expressions and this continual feedback loop between your muscles and your brain telling you what's going on for them, doesn't work so well.

With the left and right brain doing different cognitive and emotional jobs in everyone, it makes sense to me that which side is most involved in your parkinsons might affect your sense of self and how you relate to others. 

Given what's been found out about the way the body is involved in creating our feelings and thoughts, this experience of feeling more like how I used to be before parkinsonism, when I focus in on the less affected side of my body doesn't sound so daft. I don't need medical research to start to trust what I experience, and use what works for me, but it's interesting to come across links between the two.       

Sea Angler,

I had a quick look on google scholar. There's lots of research on assymmetry in parkinson's and parkinsonism and how this affects which physical and cognitive problems we're most likely to get, and the speed of the changes.  But I haven't yet found the articles that talk about what I'm wondering about. I'll have another look when my brain is in gear.   I'm struggling too with finding the words for thoughts.     

It would be so good if there was more qualitative research on parkinsons - where it's focused on what we experience and think, not just on what can be measured. 

all best,  rhubarb

 

11

Sea angler,

i just remembered reading something about assymmetry in PD and freezing of gait being partly about one side of the brain having worse problems with the sensory processing of visual info we need to regulate our step length on the other side of the body. Fits with us doing the crab walking/swerve thing without noticing, even when we're not having freezes. I'm getting a bit slow, so I don't know if that'll make any sense.  If it's nonsense, let me know and i can try again when I get my brain back 

rhubarb

 

12

 

Thank you Rhubarb

I found that's excellent, very interesting and it actually All makes a lot of sense & ties in with what i feel i am experiencing physically, cognitive and mentally You have also put it so much better than I ever could..

13

I had a problem "swerving to the left."  It was as if some mysterious force was pulling/pushing me in that direction.  One day while toward the last few hundred yards of  a 3 mile walk, the swerving got so bad, I had to call my wife to drive the 3 blocks left and pick me up.  As a result, I now use trekking poles while walking any distance and, if you use them in the manner of a nordic skier, with a little effort, you can get quite a workout.  It uses 90% of the muscles in your body and is 40% better for weight loss than is ordinary walking.  I have not had a swerving incident since I started with the poles and have lost about 5 pounds and generally feel in good shape.

14

aw cheers Sea angler  -  good to know I can still make some sense on slow days! Thanks for getting me thinking about this stuff.

 

wgpchap

that sounds quite bad, but it's magic you've found the solution. I'd heard something about the nordic walking thing for PD, but had forgotten about it. It sounds really good. Am off to look for some poles tomorrow. Thanks.

 rhubarb

 

15

Hi Rhubarb,
Thank you for your reply. Just to quickly explain the reason we try not to keep out of date information resources about health and social care on our website, even in an archive.

We want to make sure we’re providing the most up-to-date, medically accurate and evidence-based information about Parkinson’s as possible. So keeping any old, out-of-date information resources on our website, which may be based on areas of research that have since moved on, could be misleading.

We’re regularly assessed on how up to date our resources are because we’ve held the Information Standard since 2010 - a quality mark supported by NHS England, which was set up to help people choose reliable and accurate health and social care information.

Thank you

16

Hello Alison,

Thanks. Yes there hasn't been a lot of research, and I know this is the way medical charities are going. Maybe CE isn't any good for us, but we might never find out. Things that can help people won't always attract enough research funding if they don't fit well with how healthcare services are currently provided and aren't an easy way to make money. A lot of interesting, safe, useful treatments and ways of managing are never going to be OK'd by the NHS. But i get it why having this kind of information available for people with PD and parkinsonism is a job for another website. Thanks for explaining it.

rhubarb

 

 

17

Hello,

While we’re not funding any research into conductive education specifically, we are focused on supporting research to develop practical ways to improve everyday life for people with Parkinson’s.

Last year we published the results of some research we did with people with Parkinson’s, carers and health and social care professionals which helped us identify some of the most urgent challenges.

Now we’re asking the research community to come up with ways to tackle them – so watch this space as we hope to stimulate more research into these areas over the next months and years.

In the meantime, if you're interested in complementary therapies such as conductive education, our booklet on this topic gives detailed information on what type of therapies are available, how they may help and the evidence supporting their use. I hope this is useful. 

18

Alison,

That's good to know about thanks.

I had a look at the complementary therapies booklet. It's great to have something like that that has an introduction and how to find out more.

I'm sorry I'm being negative again, but it's not always realistic about what research has and hasn't been done, how it's evaluated, or what the real barriers to research in complementary and alternative medicines are. I know again that comes down to the NHS charter/standards thing and that's just the way things are.

There's loads of problems in trying to research some things. Diagnoses in one medical tradition often can't translate well into another, so alternative research that uses it's own diagnostic categories is discounted, and research that ignores alternative diagnostic categories may find little to no statistically significant benefits because they're giving them to the wrong groups of people. Some medical traditions think we're all a bit different,  but individualised treatments can't be assessed by RCTs. think it was einstein said not everything that can be counted counts, and not everything that counts can be counted.   Another thing that can't be talked about so much on medical charity websites is how bad the evidence base has been for many NHS medical interventions.  Lots of reasons for all that too, and discussing all this in relation to PD is probably for another website. It'd just be a wind up for all to go into it much here. I could add that to the list of stuff to do, when I find an NHS or alternative treatment that gives me the energy.  

 

19

Hi Rhubarb

Thanks for your post which was highlighted to me in the research team at Parkinson's UK.

We have funded some small-scale research projects looking into complementary therapies in the past (including acupuncture and reflexology) - but the results were disappointingly inconclusive.

As you say, this does not necessarily mean that these types of therapies don't work for people with Parkinson's, but that different therapies work for different people.

We know that many people find complementary therapies helpful in managing their symptoms and aim to provide people with information (through our complementary therapies booklet) that allows them to explore and find the things that work for them.

We are actually doing lots of research to understand how Parkinson's varies from person to person with the aim of helping us to test the right treatments in the right people in the future. We wrote an article about this in the last issue of Progress magazine if you're interested in finding out more:

www.parkinsons.org.uk/progress

Hope that helps!

Claire