Living with Parkinson's Disease - Meet others & come say hi

Welcome to the Parkinson's Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson's or caring for someone with Parkinson's. Let's learn from each other and share stories about living well with Parkinson's, coping with the bumps and offering tips.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Parkinson's Disease group.

Hi teresa,
So we both have same diagnosis. Is a syndrom same as disease? Mine started with numbness in left leg then gait issue january 2016. Went to Emory Atlanta last year. Doc did not think i had PD. Suggested a DAC scan which was abnormal. But neurologist in Knoxville where i live said i had very subtle symptoms. Said to exercise. Went to Mayo in Florida last week. Neurologist said he believed i had Mild Parkinson Syndrome. Said i need to do 150 minutes/week of exercise. I belong to a fitness center. Went this am. I hired a personal trainer. Did one hour exercise this am. I live alone but have great family within minutes.

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@mariemarie I’m under the impression that “syndrome” is less serious than disease, however, I don’t know that as a medical fact. My neurologist told me not to be concerned about becoming very disabled. I have not had the numbness or tightness that you mentioned but I do have the gait issues. I have a staggery-walk, especially if I’m tired or not on time with meds. I just can’t walk in a straight line, however with the meds and exercise my gait is much better. I will also have the foot drop if I’m low on the meds. Before I started taking the meds I would have the “freezing.” It is where you have a hard time walking through a door way, or just walking forward at any place. it’s like you are frozen in one spot. Have you had that symptom? I just take small doses of medicine two or three times a day and that keeps me walking well. The meds seem to increase the communication between my brain and my lower extremities. I also had neurologists tell me that I didn’t have PD but after a few falls I decided to look into the matter again and got a diagnosis. I’m glad I did as I’m sure you are as well. Keep in touch and we will both keep exercising! Teresa

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Haven’t had freezing. Doesn’t mean i won”t. When were u diagnosed?

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@mariemarie Perhaps you will never have the freezing. I was diagnosed about four years ago, but had the symptoms for about 15 years prior to that. They just became really annoying though at the time of diagnosis and were resulting in falls. Have you had any falls? The first neurologist I saw when the symptoms first started thought it might be early stages MS, but could not prove it. Later another neurologist thought it could be early stages PD, but I thought that you had to have tremors and be at least 70 to have PD and I was in my late 40’s at that time. I’ve also had voice problems, do you have a weak voice as well? Teresa

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Teresa, no falls. I was told the BIG program teaches u how to talk louder. Wonder how that’s done??? I’m 71. U are young to have PD.

Marie

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@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help you practice projecting your voice. I could not use it because I have a paralyzed left vocal cord. Most PD patients have voice problems but not usually a paralyzed vocal cord. Makes me different, I suppose. I had the vocal cord treated at Cleveland Clinic. They implanted a silastic implant so that the paralyzed cord would close up with the working cord and that helped with swallowing, choking and speech. This is not typical for PD patients, so don’t worry about it. Thanks for calling me young, I’m just a few years behind you actually. There is a new term called “young-onset” Parkinson’s and it is for diagnosis under the age of 50. My PD probably started in my late 40’s and was not diagnosed for a number of years. It’s been an interesting journey to say the least! It has been nice getting to know you. Teresa

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@hopeful33250

@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help you practice projecting your voice. I could not use it because I have a paralyzed left vocal cord. Most PD patients have voice problems but not usually a paralyzed vocal cord. Makes me different, I suppose. I had the vocal cord treated at Cleveland Clinic. They implanted a silastic implant so that the paralyzed cord would close up with the working cord and that helped with swallowing, choking and speech. This is not typical for PD patients, so don’t worry about it. Thanks for calling me young, I’m just a few years behind you actually. There is a new term called “young-onset” Parkinson’s and it is for diagnosis under the age of 50. My PD probably started in my late 40’s and was not diagnosed for a number of years. It’s been an interesting journey to say the least! It has been nice getting to know you. Teresa

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Interesting. I had a vocal chord reinforced with Kevlar about 5 years ago but it was blamed on the Epstein Barr virus as antibodies were found in my blood. Had no idea PD could be to blame.

Steve  

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@hopeful33250

@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help you practice projecting your voice. I could not use it because I have a paralyzed left vocal cord. Most PD patients have voice problems but not usually a paralyzed vocal cord. Makes me different, I suppose. I had the vocal cord treated at Cleveland Clinic. They implanted a silastic implant so that the paralyzed cord would close up with the working cord and that helped with swallowing, choking and speech. This is not typical for PD patients, so don’t worry about it. Thanks for calling me young, I’m just a few years behind you actually. There is a new term called “young-onset” Parkinson’s and it is for diagnosis under the age of 50. My PD probably started in my late 40’s and was not diagnosed for a number of years. It’s been an interesting journey to say the least! It has been nice getting to know you. Teresa

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@ggopher Hi Steve: Most docs have told me that it probably is not related to PD, but not quite sure what. Most folks with PD do have vocal cord problems but the paralyzed cord is a bit of a phenomena. Makes life interesting, I suppose! Teresa

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@hopeful33250

@mariemarie The BIG program is good for speech problems for PD folks,a speech therapist will help you practice projecting your voice. I could not use it because I have a paralyzed left vocal cord. Most PD patients have voice problems but not usually a paralyzed vocal cord. Makes me different, I suppose. I had the vocal cord treated at Cleveland Clinic. They implanted a silastic implant so that the paralyzed cord would close up with the working cord and that helped with swallowing, choking and speech. This is not typical for PD patients, so don’t worry about it. Thanks for calling me young, I’m just a few years behind you actually. There is a new term called “young-onset” Parkinson’s and it is for diagnosis under the age of 50. My PD probably started in my late 40’s and was not diagnosed for a number of years. It’s been an interesting journey to say the least! It has been nice getting to know you. Teresa

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Mine wasn’t paralyzed but was weakened. Nice to know that something wrong me might not be PD. 

Steve  

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@mariemarie

How do i add myself as a member?

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@mariemarie Great question Marie! Here is how you become a Member of the Parkinson’s group: Go to the top of this page and on the left side you will see in blue type the words,”Parkinson’s Disease.” Click on that. Then you will come to the Parkinson’s home page. At the top right of that page, you will see the word “Following” in a dark blue. Click on that and you will become a Member. As a Member, you will then receive notifications anytime someone posts in the Parkinson’s group. I hope that everyone else will do this as well, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle @macbeth @knightkris @colleenyoung Teresa

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@david59

Just wanted to say “Hi”. this month marks 20 yrs since my first symptom of PD… February 1997. Generally speaking, until last April (2016) my PD has been a problem but not what I would call a disability. but starting last April I have had an accelerated progression…freezing (if the doorbell or phone rings, I’m stuck to the floor) and near falls (have only hit the floor twice luckily). My medication drops off very quickly now and I have to plan trips to the gym or grocery store around my “window of opportunity” as I call it. Well, that’s all for now. 🙂

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@david59 Hi David: We haven’t heard from you in about a month. How are you doing? Any changes in your symptoms since you last checked in with us? We would appreciate hearing from you and knowing how you are doing. Please keep in touch. Teresa

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