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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.
How Many Out There Have Parkinsonism? Do You Know The Difference Between Parkinsonism And Parkinson's?
A MyParkinsonsTeam Member asked a question 💭
posted April 13, 2017
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A MyParkinsonsTeam Member

Adrenal failure? I’ve never met someone with the diagnosis. Do you have that? And what are the symptoms?

posted May 20
How To Overcome Fatigue, Anxiety And Poor Sleep
A MyParkinsonsTeam Member asked a question 💭

I have been diagnosed with parkinson since 2007. I had mild case of parkinson. Recently Simnet does not work well. I have Anxiety out of nowhere and yes my personal life is not causing me Anxiety. I should as I am by profession psychologist. I have lot of fatigue and even though I continue to exercise I remained fatigue. any one can recommend what anti-anxiety med they take
Thank you everyone, and have a happy and healthy new year

posted December 31, 2016
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A MyParkinsonsTeam Member

FinleyFox here. Last several months I developed insomnia due to my 6 years of PD. Also, having sleep apnea didn't help. My Neurologist recommended a mild 50mg generic sleep aid to help me sleep… read more

posted August 24, 2022
Memory Problems.
A MyParkinsonsTeam Member asked a question 💭

I am having a lot of problems talking lately . I will be talking and forget a simple word and can't think of it. Friends will add the word for me. I also can't follow conversation when people are talking to with a long story.This is happening more frequently. I only been dignosed a yr ago. Is anyone have this problem and what are you doing for it ?

posted March 1, 2017 (edited)
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A MyParkinsonsTeam Member

Yes! I have episodes of forgetting what I am saying ,finding the right words and so on. I do find it is much worse when I am fatigued or stressed. I have a neurology appointment tomorrow and am going… read more

posted 11 hours ago
Scientific Support For The Long-Term Safety Of Levodopa Use.... What Does Your Neurologist & You Believe ?
A MyParkinsonsTeam Member asked a question 💭

Despite proven effectiveness and wide use of levodopa, usually prescribed as Sinemet® (carbidopa-levodopa), to manage movement symptoms in PD, doubts have lingered over the drug’s long-term safety. Research published Oct 11, 2011 in the journal Neurology, scientists conclude that larger cumulative doses of levodopa, taken for years or decades, do not harm critical brain cells in people with Parkinson’s.

The long-term use of levodopa is associated with dyskinesia and “wearing-off” periods in… read more

posted February 13, 2016 (edited)
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A MyParkinsonsTeam Member

Thank you Allan for your post. I have a problem taking Carbidopa/Levodopa- it does not seem to affect my motor symptoms plus the fact that I was diagnosed with MSA. I still take 1-2 tablets (25/100)… read more

posted September 3, 2016
Would You Get DBS Again?
A MyParkinsonsTeam Member asked a question 💭

If you have had DBS surgery, is it something you would do again knowing what you know now?

posted February 10, 2018
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A MyParkinsonsTeam Member

Thank you so very much Patrick. Sorry to hear re: incision/scar placement and bumps of the caps used to cover the electrodes. Good to know. I agree ahead of time. I think these people see so many… read more

posted 2 days ago
Weight Problems
A MyParkinsonsTeam Member asked a question 💭

I have lost a lot of weight in the last month. I am having problems swallowing at times and feel full fast so am not eating as much as I should. I have found I have to stay away from alot of Protien as it interferes with my medications. Has anyone else noticed a large weight drop?

posted February 25, 2018
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A MyParkinsonsTeam Member

I lost 5lbs in 3 days. Am worried have to go back for the 2nd time for a mammogram the 1st one had to much density. I hope everything is ok.

posted August 13, 2022
Does Anyone Else Have Such Vived Dreams And Talk, Scream Or Holler Out In Your Sleep? Does It Wake You Or Your Wake Your Spouse?
A MyParkinsonsTeam Member asked a question 💭

My husband told me this morning that I screamed out so loud last night that our neighbors could have heard me. I don't remember dreaming about anything. Usually, when I dream, it will wake me up or I wake myself up talking or screaming. Kind of scary but have a neuro appointment on Monday and will discuss it then.

posted November 20, 2015
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A MyParkinsonsTeam Member

My husband tells me often that I was “busy, last night.” I talk, holler, mumble. Fling my arms & punch out hitting him on occasion. He’ll talk to me & grab my arms & I settle down & go back to sleep… read more

posted May 5
The Stages Of Parkinson’s Disease Progression In Parkinson’s Disease That Are Defined In Stages.
A MyParkinsonsTeam Member asked a question 💭

Parkinson’s disease impacts people in many different ways. Not everyone will experience all of the symptoms of Parkinson’s, and if they do, they won’t necessarily experience them in quite the same order, or at the same level of intensity. Even so, there are typical patterns of progression in Parkinson’s disease that are defined in stages.

You might hear your doctor refer to your Hoehn and Yahr stage. This scale, first introduced in 1967, is a simple rating tool used by clinicians as a means to… read more

posted January 15, 2016
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A MyParkinsonsTeam Member

These stages in the uk are known as 1 mild 2 moderate 3 complex 4 advanced 5 end of life you can also go up in 1/2 stages ie 2.5 to 3 and the rate of progression does not change.

posted July 20, 2017
How Come So Few PWP In The US Know About Thiamine Therapy.
A MyParkinsonsTeam Member asked a question 💭

Thiamine HCI (vitamin B1) therapy has been a game changer for me and instrumental in reversing many of my symptoms. It's quite popular in Italy, where pharmaceuticals are not always the first approach used for treatment.

At 4 weeks of 2000 mg daily, Thiamine HCI these are the benefits I have experienced
• improved balance almost normal.
• relief from constipation.
At 8 weeks of 2000 mg daily of Thiamine HCI
• swift movement instead of slow motion.
• ability to get up from a chair or out of… read more

posted June 23, 2018 (edited)
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A MyParkinsonsTeam Member

That is the best thing I’ve heard about for years. I shall speak with my neurologist when we meet this month. I feel disgusted with the amount of tablets I consume. Thank you, thank you, thank you… read more

posted January 3, 2019
Has Anyone Been Reading Up On The Two New Drug Therapies For PD?
A MyParkinsonsTeam Member asked a question 💭

I had mentioned the drug before which was a one pill slow release Amantadine which is called Gocovri, which is being used to treat dyskinesia It has been approved by the FDA. It is for those who experience side effects from amantadine now have another option. The second drug is Exenatide, a medication used to manage diabetes. Primary outcome was an improvement in motor symptoms and may slow the progression of PD. All information was taken from the Parkinson Report Fall/Winter issue just in… read more

posted October 23, 2017
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A MyParkinsonsTeam Member

Is that the CBD form?

posted March 9, 2020
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