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Moderator

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

Posted by Colleen Young, Connect Director @colleenyoung, Dec 8, 2016

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 Support Group.

Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 7 7:19am
In reply to @nova11723 "@js2022 I tried Crexont for two months, and it made me kind of stressed out. I..." + (show)
Profile picture for nova11723 @nova11723

@js2022 I tried Crexont for two months, and it made me kind of stressed out. I would love to hear stories about cases where Crexont worked.

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@nova11723 AND @js2022

I'm wondering if you took any medication for PD prior to Crexont? If so, how did you feel then?

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2 replies
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js2022 | @js2022 | Sep 7 9:04am

I had taken c/l er but it wasn't as effective as crexont.

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nova11723 | @nova11723 | Sep 7 9:07am
In reply to @hopeful33250 "@nova11723 AND @js2022 I'm wondering if you took any medication for PD prior to Crexont? If..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@nova11723 AND @js2022

I'm wondering if you took any medication for PD prior to Crexont? If so, how did you feel then?

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@hopeful33250 Oh yes. I've been on Sinemet for years. Also Requip and Comtan currently. In the past, I have taken Agilect, Safinamide, and Ongentys, but I am not on any of those currently. To answer how I feel, it is a complicated answer. I have felt the best when the foundation drug is Sinemet; I never felt good with Crexont or Ongentys. I wanted Crexont to work because it did give me the most "on" time I have ever had (like 5 or 6 hours if memory serves), but the side effects started impacting my work, and I couldn't have that.

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2 replies
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 7 12:14pm
In reply to @nova11723 "@hopeful33250 Oh yes. I've been on Sinemet for years. Also Requip and Comtan currently. In the..." + (show)
Profile picture for nova11723 @nova11723

@hopeful33250 Oh yes. I've been on Sinemet for years. Also Requip and Comtan currently. In the past, I have taken Agilect, Safinamide, and Ongentys, but I am not on any of those currently. To answer how I feel, it is a complicated answer. I have felt the best when the foundation drug is Sinemet; I never felt good with Crexont or Ongentys. I wanted Crexont to work because it did give me the most "on" time I have ever had (like 5 or 6 hours if memory serves), but the side effects started impacting my work, and I couldn't have that.

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Thanks for the background, @nova11723. What symptoms are the most troublesome when you have "off-times"?

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1 reply
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nova11723 | @nova11723 | Sep 8 8:41pm
In reply to @hopeful33250 "Thanks for the background, @nova11723. What symptoms are the most troublesome when you have "off-times"?" + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Thanks for the background, @nova11723. What symptoms are the most troublesome when you have "off-times"?

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@hopeful33250 General stiffness and slowness are the major symptoms that are the most troublesome when I am in the "off" state. When it is really bad, it is hard to walk.

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js2022 | @js2022 | 5 days ago
In reply to @hopeful33250 "@nova11723 AND @js2022 I'm wondering if you took any medication for PD prior to Crexont? If..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@nova11723 AND @js2022

I'm wondering if you took any medication for PD prior to Crexont? If so, how did you feel then?

Jump to this post

@hopeful33250
Before crexont I took Sinamet which didn't help me at all.

REPLY
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js2022 | @js2022 | 5 days ago

Is there a chat site for PD?? Separate from this site.

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1 reply
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js2022 | @js2022 | 5 days ago
In reply to @nova11723 "@hopeful33250 Oh yes. I've been on Sinemet for years. Also Requip and Comtan currently. In the..." + (show)
Profile picture for nova11723 @nova11723

@hopeful33250 Oh yes. I've been on Sinemet for years. Also Requip and Comtan currently. In the past, I have taken Agilect, Safinamide, and Ongentys, but I am not on any of those currently. To answer how I feel, it is a complicated answer. I have felt the best when the foundation drug is Sinemet; I never felt good with Crexont or Ongentys. I wanted Crexont to work because it did give me the most "on" time I have ever had (like 5 or 6 hours if memory serves), but the side effects started impacting my work, and I couldn't have that.

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@nova11723
What were your crexont bothersome side effects? My fatigue is bad but my inability to concentrate is taking a toll on my paying bills and getting info organized to do my 2025 taxes. I filed an extension but haven't started getting my numbers ready for my cpa.

REPLY
1 reply
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nova11723 | @nova11723 | 4 days ago
In reply to @js2022 "@nova11723 What were your crexont bothersome side effects? My fatigue is bad but my inability to..." + (show)
Profile picture for js2022 @js2022

@nova11723
What were your crexont bothersome side effects? My fatigue is bad but my inability to concentrate is taking a toll on my paying bills and getting info organized to do my 2025 taxes. I filed an extension but haven't started getting my numbers ready for my cpa.

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@js2022 When I was on Crexont, it made my anxiety much worse. Driving a car was harder. It got so bad that I had it cause me to be a basketcase on a cross-country flight, i.e.. arm moving out of control, but then wore off right before we landed. I could barely walk off the plane. I remember after I got off Crexont that my arm had spasmed so much that it was painful to raise it for several weeks until my arm's muscles healed.

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2 replies
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nova11723 | @nova11723 | 4 days ago
In reply to @nova11723 "@js2022 When I was on Crexont, it made my anxiety much worse. Driving a car was..." + (show)
Profile picture for nova11723 @nova11723

@js2022 When I was on Crexont, it made my anxiety much worse. Driving a car was harder. It got so bad that I had it cause me to be a basketcase on a cross-country flight, i.e.. arm moving out of control, but then wore off right before we landed. I could barely walk off the plane. I remember after I got off Crexont that my arm had spasmed so much that it was painful to raise it for several weeks until my arm's muscles healed.

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@nova11723 If it works for you, that's great! Finding a drug "cocktail" that aligns with your condition is extremely important.

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