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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Taking Side Steps.

A MyParkinsonsTeam Member asked a question 💭
Westbrook, ME

I have not been experiencing dizziness or balance issues lately. However, I have been taking a couple of steps sideways out of the blue. Does anyone else experience this?

August 10, 2022
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A MyParkinsonsTeam Member

I am reluctant to give advice, but will give my personal experience. My first neurologist told me, that I would not die from Parkinson's Disease, that I would die one day, but not from Parkinson's. He was correct, Parkinson's Disease does not kill people, it is from other complications. The two main causes of death to people with PD are Slips/Falls and Pneumonia.

The two things you should do is join a local support group if one exists .Get with your Neurologist or Family Physician to get with a therapist for your limitations. I was diagnosed 15 years ago and the first ten years it was a nuisance, but not totally limiting. We retired and moved to Georgetown, Texas to be nearer our grandchildren, and things progressed faster than I had ever imagined. I stumbled upon a local support group that turned out to be the best thing that ever happened to me. It was through that group I became aware of https://www.parkinsonvoiceproject.org . Previous responses mentioned BIG and other programs for PD. With PD there is a good chance our voices will get weak, as will our chewing/swallowing processes. thus making us candidates for Pneumonia. It's not just balancing we need to be aware of.
Today I attend therapy sessions, see a trainer every week, and try to work out or walk an additional day a week, in addition to voice training, and other sessions as available. I know I should be working out more, but we also have personal lives we need to tend to as well. We moved here to be nearer the grand children, not to be buried nearer to them.

The only ting that is recognized that will slow the development of PD is exercise. There are a lot of medicines available, and we each react differently, but that medicine only treats the symptoms, it does not slow the progression of the disease. You need to understand as much as you can, and make decisions on how to approach it. The evolution of the disease will be there. If we can at least manage the symptoms as best we can and work of preventing as many
unnecessary events as possible. With a good physician, and support group, and appropriate medicines our journeys, will hopefully, be much more tolerable.

Take Care and Be Safe

August 12, 2022
A MyParkinsonsTeam Member

I was "introduced" to PD 4 years ago and try to keep a positive mindset and deal with each day as it presents itself. It's easy to get depressed and best to surround yourself with friends that support you. If you can get together with those in your area, there's nothing wrong with meeting and comparing notes as I'm sure there is a lot we all can learn from each other. I'm in Sequim WA and would be open to meeting with folks within driving time. Dorothy

August 13, 2022
A MyParkinsonsTeam Member

The Walker let’s you know when it’s time. If you have fallen and know you might again. It’s time. You can however, exercise you’re way out of that need. Aggressive exercise can actually push Parkinson’s so symptoms back. I did it with LSVTBIG, and then even more with Rock Steady Boxing. There are many exercise programs that will work. In the interim, don’t risk the fall. Pride isn’t helpful in Parkinson’s.

August 22, 2022
A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member. Leg cramps can be caused by a number of things. I hate it when health care providers toss out the most likely cause without checking a thing. Like their a psychic or something.

Parkinson’s disease can cause cramps on it’s own. Having too much C/L can cause, but so can too little. It can be caused by “off time” when your meds wear off.

I’ve had cramps so bad that I could hardly get out of bed, and when I did it took all my strength to straighten my leg to get my foot on the floor. Its a good idea to research every issue you have before you see your health care provider. At least one of you should know what your talking about. I’m attaching a link to an article that explains it quite nicely.

https://my.clevelandclinic.org/health/diseases/...

August 12, 2022
A MyParkinsonsTeam Member

I can relate to uncomfortableness when standing and idle. I tend to sway my body slightly to reassure myself i am in control. My Physical Therapist snd trainer both emphasize the importance posture and balance. I don't know if this is the same thing, but a lot of my time in therapy is spent on maintaining balance.

Good Luck and Be Safe

August 12, 2022

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