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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.

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nova11723 | @nova11723 | 4 hours ago
In reply to @agusti "@hopeful33250 Buenas noche. Gràcias por contestar. De momento, lo único que he tomado ha sido el..." + (show)
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@hopeful33250 Buenas noche. Gràcias por contestar. De momento, lo único que he tomado ha sido el SINEMET y ONGENTYS. En los años que llevo con el Parkinson, mi neurólogo ha ido modificando, segun los síntomas, las dosis de medicamento. Ahora mismo creo que tendría de hacerlo de nuevo o recetarme un retardador . Por lo que he ido viendo, el problema es que, con el avanzar el dia, la levadopa pierde eficacia (Horas down) y habría que hacer algo al respecto. El medicamento se llama SINEMET RETARD y alarga el efecto de la levadopa durante la noche. El problema es que no tengo visita con el neurólogo hasta diciembre.

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@agusti
Ongentys is pretty strong, maybe too strong. Look into Comtan to extend the effect of Simenet. A dopamine agonist such as Requip will help with movement. These all can be taken together.

I find that getting input from multiple neurologists is helpful if possible. I am not a doctor, just sharing my experiuence taking these drugs.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 2 hours ago
In reply to @agusti "@hopeful33250 Buenas noche. Gràcias por contestar. De momento, lo único que he tomado ha sido el..." + (show)
Profile picture for agusti @agusti

@hopeful33250 Buenas noche. Gràcias por contestar. De momento, lo único que he tomado ha sido el SINEMET y ONGENTYS. En los años que llevo con el Parkinson, mi neurólogo ha ido modificando, segun los síntomas, las dosis de medicamento. Ahora mismo creo que tendría de hacerlo de nuevo o recetarme un retardador . Por lo que he ido viendo, el problema es que, con el avanzar el dia, la levadopa pierde eficacia (Horas down) y habría que hacer algo al respecto. El medicamento se llama SINEMET RETARD y alarga el efecto de la levadopa durante la noche. El problema es que no tengo visita con el neurólogo hasta diciembre.

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@agusti
I see that your next neurology appointment will be in December. Is it possible to contact the doctor's office before your appointment to explain what is happening? I have found from my own experience that Parkinson's symptoms are worse when I am tired (later in the day). Perhaps a different medication might be helpful. Have you used Entacapone? It helps the Sinemet to stay in your brain longer. Perhaps you are already taking this?

Exercise can be very helpful in controlling PD symptoms. Are you involved with a regular exercise program, or have you had physical therapy that specifically addresses Parkinson's?

You mentioned that you wish you could talk with your neurologist when these involuntary movements begin. Is it possible for a family member to take a video (perhaps with their phone) to record what these involuntary movements look like? This might help your neurologist better understand what you are dealing with.

These are just some suggestions from my own experience. I am not a medical professional, just a patient like yourself. I look forward to hearing from you again. Will you continue to post with your questions and concerns?

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