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.

My wife's neurologist believes a Duoma approach to curb her symptoms is the way to go. I see it as a drastic approach and wonder if others have experienced going this route and what they can say about it.
Phil

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My husband was recently diagnosed with Parkinsons. He's had tremors, balance issue, trouble with words, temper/frustration, and has been in denial for 3+ years. He worked in an anhydrous ammonia fertilizer plant for many years, where they stored, loaded and unloaded anhydrous. There were times he'd come home from work and when kissing him, and I could taste the chemicals on his lips. I would insist he go take another shower, even though he took one before leaving the plant. Could there be a connection between anhydrous and Parkinsons? Thank you for any information you can provide.

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@bvoelschow

My husband was recently diagnosed with Parkinsons. He's had tremors, balance issue, trouble with words, temper/frustration, and has been in denial for 3+ years. He worked in an anhydrous ammonia fertilizer plant for many years, where they stored, loaded and unloaded anhydrous. There were times he'd come home from work and when kissing him, and I could taste the chemicals on his lips. I would insist he go take another shower, even though he took one before leaving the plant. Could there be a connection between anhydrous and Parkinsons? Thank you for any information you can provide.

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Hello @bvoelschow and welcome to Mayo Clinic Connect. I think you ask a very important question knowing his exposure. I am curious if you shared this concern/background with the neurologist who diagnosed your husband? If so, what was shared with you?

I was able to find a member who had posted about this same connection and concern. I am hoping that @robjohn may come back to share more with you about this connection for him and what he has learned.

Does your husband recognize this connection as a potential concern?

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My name is Sharon and I'm 74 years old. I've just been diagnosed with Parkinson's disease. It started with a mild hand tremor and focusing my eyes. Now every time I tell someone they give me a horror story about someone they know that I've Parkinson's disease. It's getting very depressing. I have been exercising for almost a year religiously… Therefore it's not something new I need to start….
I'm having sleep problems already. I never slept good to begin with and now it's even worse. I fall asleep but have a problem staying asleep. I guess the good thing is I'm not extremely tired during the day even though my sleeping is bad. I guess I'm wondering how other people are dealing with diagnosis Parkinson's disease. I am also fearful for I have no one to take care of me when the condition worsens. Any insights us to actions to take would be appreciated.
Thank you

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@shar1438

My name is Sharon and I'm 74 years old. I've just been diagnosed with Parkinson's disease. It started with a mild hand tremor and focusing my eyes. Now every time I tell someone they give me a horror story about someone they know that I've Parkinson's disease. It's getting very depressing. I have been exercising for almost a year religiously… Therefore it's not something new I need to start….
I'm having sleep problems already. I never slept good to begin with and now it's even worse. I fall asleep but have a problem staying asleep. I guess the good thing is I'm not extremely tired during the day even though my sleeping is bad. I guess I'm wondering how other people are dealing with diagnosis Parkinson's disease. I am also fearful for I have no one to take care of me when the condition worsens. Any insights us to actions to take would be appreciated.
Thank you

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Hello @shar1438, I would like to welcome you to the Parkinson's discussion at Mayo Connect. I can certainly understand your fears. When first diagnosed (after many years of symptoms and not getting a proper diagnosis) I was relieved but also fearful for the future. I would suggest that when someone offers you a "horror story" that you kindly ask them to stop. Remember that each person's response to the treatment for Parkinson's is different and someone else's story will not be the same as your own.

I'm really glad to hear that you have been exercising, that is great!! If you don't mind sharing more, what type of meds have been suggested to treat your Parkisnon's?

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@hopeful33250

Hello @shar1438, I would like to welcome you to the Parkinson's discussion at Mayo Connect. I can certainly understand your fears. When first diagnosed (after many years of symptoms and not getting a proper diagnosis) I was relieved but also fearful for the future. I would suggest that when someone offers you a "horror story" that you kindly ask them to stop. Remember that each person's response to the treatment for Parkinson's is different and someone else's story will not be the same as your own.

I'm really glad to hear that you have been exercising, that is great!! If you don't mind sharing more, what type of meds have been suggested to treat your Parkisnon's?

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Thank you for your response. Today I have not been prescribed any medications. I am to see another specialist on the 24th of the month. It was to be on the 6th of the month but they rescheduled me and so I've been waiting. I'm imagining that's when they will talk about medication. I have heard that it is not long-term, the medication that is. I've been told that it is smart to stay off as long as possible. But not by anybody in the profession only by people that have had friends or family that have had Parkinson's disease.
Again thank you for your response. It's quite frightening to be sure.

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@shar1438

Thank you for your response. Today I have not been prescribed any medications. I am to see another specialist on the 24th of the month. It was to be on the 6th of the month but they rescheduled me and so I've been waiting. I'm imagining that's when they will talk about medication. I have heard that it is not long-term, the medication that is. I've been told that it is smart to stay off as long as possible. But not by anybody in the profession only by people that have had friends or family that have had Parkinson's disease.
Again thank you for your response. It's quite frightening to be sure.

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@shar1438

I'm glad to hear that you will be seeing a specialist later this month. He/she should be able to give you a good opinion regarding starting meds. After I was diagnosed, the medication helped many of my symptoms and it was a great relief to me.

As you mentioned in your first post that you were having sleep problems, take a look at this discussion on Parkinson's and sleeping problems,
https://connect.mayoclinic.org/discussion/parkinsons-and-vivid-dreams/?pg=2
I look forward to hearing from you again. Will you post with an update after you see the specialist?

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@hopeful33250

@shar1438

I'm glad to hear that you will be seeing a specialist later this month. He/she should be able to give you a good opinion regarding starting meds. After I was diagnosed, the medication helped many of my symptoms and it was a great relief to me.

As you mentioned in your first post that you were having sleep problems, take a look at this discussion on Parkinson's and sleeping problems,
https://connect.mayoclinic.org/discussion/parkinsons-and-vivid-dreams/?pg=2
I look forward to hearing from you again. Will you post with an update after you see the specialist?

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Thank you for your concern and kindness. And for your article/link about sleeping. I will definitely post an update after I see the specialist. Perhaps I can get some review for my symptoms as well…… Thank you again. Sharon

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@shar1438

Thank you for your concern and kindness. And for your article/link about sleeping. I will definitely post an update after I see the specialist. Perhaps I can get some review for my symptoms as well…… Thank you again. Sharon

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Hi @shar1438

Here is a link to a video that you might find helpful, https://m.youtube.com/watch?v=6s4A6HFkjGo&feature=youtu.be. The neurologist who is the speaker has done a lot of research on Parkinson's and sleep problems.

I hope that the link I posted yesterday and this video will help you feel less alone.

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So the neurologist put me on carbidopa levodopa on Thursday 3/24. I had been nauseous and throwing up since Friday the 25th. I have been taking it first thing in the morning, an hour before eating with some saltines and ginger tea. Didn't help. I am also very tired, find that I am sleeping a whole lot more. It's not an exhausted type of tired just sleepy. It is supposed to help the hand tremor, so far it has not done anything for it. I'm interested to see how other people have reacted to this medication. Would welcome any helpful suggestions. I have been doing a ton of reading but would welcome any more insight….

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Hello All:

The David Phinney Foundation does some great research and teaching about PD. They have an upcoming Webinar on Men and Parkinson's on April 26. Here is the link with more specific information about the time and registration. Please know that if you register and cannot attend on that day the Foundation will send you a link to the recorded webinar when it is available.
http://dpf.convio.net/site/MessageViewer?em_id=5301.0&dlv_id=9821&pgwrap=n

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@bvoelschow

My husband was recently diagnosed with Parkinsons. He's had tremors, balance issue, trouble with words, temper/frustration, and has been in denial for 3+ years. He worked in an anhydrous ammonia fertilizer plant for many years, where they stored, loaded and unloaded anhydrous. There were times he'd come home from work and when kissing him, and I could taste the chemicals on his lips. I would insist he go take another shower, even though he took one before leaving the plant. Could there be a connection between anhydrous and Parkinsons? Thank you for any information you can provide.

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Hello @bvoelschow,

You last posted about a month ago and I was wondering how you and your husband were doing with his PD diagnosis. I also wanted to invite you to a webinar about Men and Parkinson's which I just posted below.

If you (or you and your husband) view it, you might get some good information to help you. Here is the link to register for the April 26 webinar. http://dpf.convio.net/site/MessageViewer?em_id=5301.0&dlv_id=9821&pgwrap=n.

If you aren't available to watch it on April 26, please register anyway as the Foundation will send you a link for the recorded event.

As you have probably found out already, working with fertilizer and/or living on a farm does increase the chances of getting Parkinson's.

How is your husband feeling now? Is he taking any PD medications?

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