Trying to stand up straight: Hi help please... - Cure Parkinson's

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Trying to stand up straight

LondonPD profile image
32 Replies

Hi help please

My PD suffering husband has developed a terrible slumped forward posture. He can straighten up but usually it is short lived.We do cardio , PD warrior and boxing. He has massage. Takes meds, supplements, 2 weeks into Red Coronet and wears the Eye Guide. It is my life work now just to try and keep him as well as possible.We struggle but try to take it one day at a time.

Does anyone have experience of any devices or tools to help him stand up straight. We think, apart from looking very typically PD,it is also giving him neck and back ache.

Am also considering one of the light devices which has shown improvements in the gut ( brain connection) in initial trials. Who has time to wait for further trials.

All advice appreciated thanks.

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LondonPD profile image
LondonPD
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32 Replies
kathy775 profile image
kathy775

I came across a walker on amazon ... you can see reviews, it seems to help people stand up more straight when walking: amazon.ca/ELENKER-Upright-B...

May I ask what you're referring to when you say an Eye Guide ... do you mean a laser?

LondonPD profile image
LondonPD in reply tokathy775

eyeguidemc.co.ukWe do think this does help with balance and confidence on a good day.

They are really nice supporting people to deal with. Our neurologist thinks it is based in science and gave his approval.

kathy775 profile image
kathy775 in reply toLondonPD

This is interesting, I appreciate your sharing your experience. My dad also has issues with posture. Taking a cue from JohntPM's comment below, there seem to be some smartphone apps these days for posture. There are also general "posture devices" for hunched shoulders. (Fyi, my dad is the one diagnosed with PD, not me ... but I had tried a posture training device called PostureMedic.com, recommended by a chiropractor years back because I was hunching my shoulders a lot out of fatigue ... I recently used it again, and for me it did help improve posture and relieve muscle strain very quickly, and it is meant to be worn only for 15 minutes a day. I use it very occasionally. The rubber bands cut into one's arms, so it is not meant to be worn for a long time.) But after a minute googling "posture device Parkinson's," I came across something that is more like a brace ... the Calibrace+ specifically for PwP just now:

youtube.com/watch?v=4ZnROQG...

blog.csamedicalsupply.com/n...

abililife/parkinsonsnewstoday.com/201...

(For those in the U.S., it seems to be covered by insurance.)

Despe profile image
Despe in reply tokathy775

We wasted $1,200! Doesn't work as it is claimed.

Despe profile image
Despe in reply toLondonPD

How can I purchase one in the US? Guess I can contact them.

park_bear profile image
park_bear

He is undermedicated. Symptom relieving medications have their place.

Despe profile image
Despe in reply topark_bear

Maybe, but what happens when medication wears off, PB? Any long term solution? I remember someone had posted that a scoliosis armor worked for her mother.

LondonPD profile image
LondonPD in reply topark_bear

Interesting thought. Had no idea meds would help posture. We are seeing the GP on Monday . Much appreciated.

park_bear profile image
park_bear in reply toLondonPD

Levodopa medication definitely helps my posture. When I am undermedicated my back hurts and it is hard to hold it up straight.

Oceanflow profile image
Oceanflow

In my experience, meds help every unexpected little health problem that relates to PD. Breathing, my diaphragm muscle , my chewing and swallowing ability , how well I can walk (with normal sensation on the soles of my feet ).,,, etc if I skip my sinemet I get into trouble!!

windhorsepixy profile image
windhorsepixy

I recently got my hwp a pair of trekking poles for his daily walks around the neighbourhood. You hold onto them much higher than a cane (arms bend at 90 degrees) - therefore balancing yourself more upright. Physical Therapist is coaching him on how to use them. Should be strengthening for all parts of the body - trying to get away from the cane & tending to bend over & to put weight on it. They are taxing at first but he seems to be progressing - part of his issue is spinal stenosis for which he may get surgery - but the stronger his core muscles can be - the stronger his back & the better/easier his recovery from ss surgery.

LondonPD profile image
LondonPD in reply towindhorsepixy

Yes we do have those and do use them on some walks but maybe more would help.

johntPM profile image
johntPM

A few years ago I wrote an app for an Android smart phone that measures your stoop and lean continuously and warns you, by beeping, if you exceed preset limits. A problem that I never solved was that your smart phone had to be worn on top of the head under a hat!

parkinsonsmeasurement.org/t...

I never proved that this device was efficacious in the long term.

JohnPepper profile image
JohnPepper

Yes! THere is a way to overcome posture and walking problems. It costs nothing but requires the patient to do exercise and to start using his conscious brain to control his movements. If you contact me at johnpepper@telkomsa.net I will GIVE you everything you need to know.

JustJeff profile image
JustJeff

On holiday recently i was carrying a rucksac on my back and noted my posture was slightly better.......worth a try maybe?

Dap1948 profile image
Dap1948

Yoga keeps me aware of my posture. Interestingly, my husband bends and shuffles terribly and he isn’t the one with PD!

Missy0202 profile image
Missy0202

I have a little device that calibrates to your upright posture, and when you slouch it vibrates to remind you to correct. It is called upright. It is worn like a necklace backwards with the small device resting on the upper back area

LondonPD profile image
LondonPD in reply toMissy0202

Hi thanks. Can you send me the link. I have wondered if these work. Do you find that ot does?

Missy0202 profile image
Missy0202 in reply toLondonPD

uprightpose.com/lp/adw/ga-u... It works well, but can get annoying at times, especially if you tend to slouch

kathy775 profile image
kathy775 in reply toMissy0202

That sounds excellent ... may I ask how much of a difference this device has made for you?

Missy0202 profile image
Missy0202 in reply tokathy775

Like anything else, if you wear it, it helps correct your posture. It works well, but can be bothersome if you are doing housework or gardening and bending over lot. I pick and choose when to wear it, like at the computer when I tend to slouch, or when I go out of or walk etc. Here is the link uprightpose.com/lp/adw/ga-u...

kathy775 profile image
kathy775 in reply toMissy0202

I appreciate you sharing the details of your experience. Many thanks!

Smittybear7 profile image
Smittybear7

Please forward the light information. How does it work? Where can you get it? What does it cost? Any side effects to be concerned about? I live in Pittsburgh PA. Thanks

LondonPD profile image
LondonPD in reply toSmittybear7

wellred.com.au/the-coronet is what we are trying . Too soon to know if helps.

Smittybear7 profile image
Smittybear7 in reply toLondonPD

Thanks for the information. I have dry infrared sauna with light therapy. Is red light therapy the same?n

gwendolinej profile image
gwendolinej in reply toSmittybear7

See Zella23 posts. The wellred coronet is expensive, but much better quality than the men’s shed version, which Zella23 is using with great success. We have the cheaper version and will report on progress in due course. My husband’s neurologist says that some of his patients report that they are using it with good results.

Smittybear7 profile image
Smittybear7 in reply togwendolinej

Thanks

kaypeeoh profile image
kaypeeoh

I've seen a guy at the gym wearing a brace that straightens the back by pulling on the shoulders. A few years ago I sprained my back. I used a brace, the type that furniture movers wear. My wife said it made me walk like a Marine, meaning no slumping forward.

LondonPD profile image
LondonPD in reply tokaypeeoh

Don’t think I will get him in a brace but thank you.

Art_lover45 profile image
Art_lover45

Don't laugh but I solved my back problem (incipient scoliosis) and a tendency to lean forward to counteract the pain. Now for the last 30 years we have sat every evening on the beautiful bottle green Chesterfields which we had made when we went to live in Lugano for a couple of years. I started to think I can't straighten my neck and head and was always looking for the magic bullet but one day in the garden centre it came to me in a blinding flash - High back - straight - reclinable chairs that spoil the look of the drawing room but for long time sitting (PD has made me lazy) are just wonderful. No slumping - adjustable and no more back ache or scoliosis. The PD nurse wanted to know what I did as I now walk straight. Go have a look. If you need to come and see me we are in Ottershaw near Woking, KT160JQ. We also have electronic beds but we had them long before PD set in. So if you want me you can have me. We need all the help we can get. I don't have the cure - yet - but it is only a matter of time. Good luck.

LondonPD profile image
LondonPD in reply toArt_lover45

Thank you for thought provoking idea.

House2 profile image
House2

youtu.be/cH2G5CLSq-Y?t=50

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