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

@hopeful33250
Hello and welcome to mayoconnect! You can ask me anything that you would like to know! I was a Caregiver to my spouse since 2013 and he died 3 months ago! I can tell you things I did and anything you would like to know in general! Hugs to you and your family!

Hello @andrew95, and welcome to the PD support group on Mayo Clinic Connect. I appreciate your response to @vince195. As this is your first post, please share a bit about your journey with PD. I was wondering how long ago you were diagnosed and what your most bothersome symptoms are now?

@vince195 Am in similar position. It helps a bit to reduce brain fog but still have tremors. No anxiety or depression thankfully. Sounds like you need to talk to your doctor.

@vince195
I'm sorry to hear that you don't notice any difference with your PD medication. Did you tell your doctor about this? Perhaps a change in medication might be helpful.

Besides the medication, what else are you doing to treat PD? For example, exercise is a valuable tool for managing many symptoms of PD. Here is a link to the Michael J. Fox website regarding the value of exercise for PD patients: https://www.michaeljfox.org/news/exercise?

Are you part of a physical therapy or other exercise program?

@vince195 If your symptoms go away, then you know. Your symptoms change as the disease progresses, but usually involves a tremor and stiffness. It usually takes 30-60 minutes.

I have this for around 3 years. I was just at the neurologist yesterday, she asked me if I feel the medicine working or when it works. Carbidopa Levodopa25-100, I feel nothing then she asks me if the medicine works, how do I know

@nova11723 Hola. Buenos días.Lamentablemente no tengo conocimientos médicos, ni puedo decir si un medicamento es mejor que otro. Tomo Ongentys porque es lo primero (y único por ahora) que me recetó el neurólogo.
Seguro que tienes razón en lo de obtener la aportación de diversos neurólogos. Tu mismo lo dices: útil si es posible, Para mí ahora mismo no es posible. Lástima.
Agradezco tu aportación

@hopeful33250 Hola. Buenas noches Teresa. Gracias de nuevo por tu interés. En los años que llevo diagnosticado de Parkinson. sólo he tomado SINEMED y ONGENTYS. En estos dos años he tenido 4 visitas con l neurologo (más o menos cada 6 meses) y lo que ha hecho. cuando lo ha creido necesario, ha sido modificar la dosis y el intervalo de toma del medicamento. Hay que decir que, a vaces, con éxito.
Desconozco, porque no me lo han receptado nunca, si hay medicación específica para tratar movimientos involuntarios. ¿Alguien puede ayudar en eso? Gracias.

@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?

@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.