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

Anyone have some dietary suggestions for Parkinson's that have been helpful?

@cartercd
Hi, I'm Emmy. Parkinsons diagnosis in 2020. I've been taking the generic for Sinemet for Carbidopa/Levodopa and the generic for Lodosyn for Carbidopa.
I'm considering starting a new drug names Crexont. I'd like some feedback on experiences with taking this drug from the group.
Thanks so much.

@larias1955
I think the person who has Parkinsons goes through so much and everything is stressful and can be overwhelming. The ones who love and care for them also feel their stress and their own . Day in and day out...what is going to happen today? Will he fall? Will he sucumb to his disease process. I have cried and we have laughed. But life is not easy right now. Some days feel like he has gotten closer to the end. Then those days seem normal, like it used to. Please know that I only know what I research and what our Physicians say. No one is promised another day or less. Life is worth having and it can change to the better or worse. Live each day to its fullest. If you need help, than get the help. No one can tell you how to live. Don't let an illness define you. God bless you and 🫂💕

Thank you. I will take a look at the links. I appreciate the advice and support.

Hello again @esther589

I recall when my symptoms began, that fatigue was the most frustrating problem. I, too, was used to being active and had to curtail all of those activities that I enjoyed. Finding ways to be physically active without exhaustion was important.

I did find PD exercise classes, which were helpful. Most of these classes involved exercise while seated. There are excellent seated exercise videos for PD on YouTube, which are available without a fee (https://www.youtube.com/@PowerforParkinsons). If there is a Parkinson's organization in your community, you might check to see if they offer exercise programs for PD patients. There are also PD dance classes (and videos) such as the Mark Morris Dance Group: https://markmorrisdancegroup.org/community/dance-for-pd/

Have you asked your doctor for a referral for physical therapy? If not, please do so. There are physical therapists who are specially trained in a program called Big and Loud. It provides excellent physical and speech exercises. Here is a link with more information: https://www.lsvtglobal.com/

The more proactive you become, the better you will feel. You will post again and let me know how you are doing with this adjustment process?

@esther589
TYPO
I meant "it's NOT a major problem'"

@hopeful33250
I sometimes have difficulty swallowing but it's a major problem at this time. Emotional instability is very challenging and also extreme fatigue. I was previously very active. I continue to challenge myself but some days are just overwhelming and my body needs to rest.

@shambunny
I can't imagine what it must be like to have all these very challenging health issues to deal with. I am also in my sixties. I understand your fear. I hope you have lots of love and support to help you through.

@esther589
Hello,
Welcome to mayoconnect. Your story just caused me to stop and reread. I cannot imagine what you are feeling . This is an awesome site. Again welcome. 🫂💕

Hello @esther589, and welcome to the PD support group on Mayo Clinic Connect. I can understand how difficult it is to adjust to the idea of having a disorder like PD. It does feel like you have to start a whole new life.

I'm glad to hear that some of your symptoms have decreased with the use of the medication. Have you begun any physical therapy for PD yet? When you start PT, you will be amazed by how much better your mobility becomes. Exercise combined with medication is an essential component in treating PD.

It is hard to say what to expect in the months ahead. Some of us have minor disability and others more. As you read the posts from other members, you will see that there are no hard and fast rules or timelines.

What are the most difficult symptoms for you right now? Is speech or swallowing a problem for you?