1. < Parkinson's Disease
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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 4 days ago
In reply to @jflamini "Would love to share our drug regiment. I am early in my diagnosis to I take..." + (show)
@jflamini

Would love to share our drug regiment. I am early in my diagnosis to I take 25/100 Carbidopa-levodopa two to three times a day as needed. My wife's regiment is more sophisticated as follows:

Carbidopa-levodopa 25/100 MG four times per day
Entacopone 200 MG two times per day to enhance the Carbidopa
Mirapex 1 MG Once per day to enhance Carbidopa
Selegiline 5 MG Twice per day to enhance Carbidopa
Gocovri (formerly Amantadine) 137 MG Two capsules per day for dyskinesia
Apoken (Apomorphine HCI) 30 MG Injection for freezing as needed
Trazodone 50 MG Two tablets sat night to sleep
Vitamin C 100 MG
Vitamin D3 50 MCG

Jump to this post

@jflamini

I appreciate you sharing the drug regimen for both you and your wife. I would encourage @janetgeller9 to look at it as well. There is one aspect of the list of drugs that might be helpful for her to discuss with her husband's neurologist, Entacapone. This helps the Carbidopa-levodopa remain in the brain longer and keeps the symptoms better controlled. I've taken a med called Stalevo (brand name) which combines Carbidopa-levodopa and Entacapone. Here are WebMD links, that will provide more information about Entacapone and Stalevo, https://www.webmd.com/drugs/2/drug-17763/entacapone-oral/details.
https://www.webmd.com/drugs/2/drug-76453/carbidopa-levodopa-entacapone-oral/details
For sleep, Trazodone can also be very helpful.

Your suggestion about seeing a movement disorder specialist is also very wise.

REPLY
janetgeller9 | @janetgeller9 | 4 days ago
In reply to @jtes "Have you checked your area Rec Centers, Y’s or Parkinson's Associations? My husband attends Parkinson's Boxing..." + (show)
@jtes

Have you checked your area Rec Centers, Y’s or Parkinson's Associations? My husband attends Parkinson's Boxing at our Rec Center and in addition to the exercise regularly gets to meet others and their care partners. It’s a big help to him. I’m sorry you’re going through this.

Jump to this post

Thank you for your comments and suggestions.

REPLY
mimi25 | @mimi25 | 2 days ago

Hi, I have been diagnosed for almost 1 year . It has been the worst year ever. I had a hard time accepting the diagnosis and was diagnosed late, so have been playing catch up. I read about Parkinson's patients having good days.. Do they ever come??

REPLY
3 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | 2 days ago
In reply to @mimi25 "Hi, I have been diagnosed for almost 1 year . It has been the worst year..." + (show)
@mimi25

Hi, I have been diagnosed for almost 1 year . It has been the worst year ever. I had a hard time accepting the diagnosis and was diagnosed late, so have been playing catch up. I read about Parkinson's patients having good days.. Do they ever come??

Jump to this post

Hi @mimi25 - I'm so sorry to hear this year since your diagnosis with Parkinson's has been the worst year ever.

I know that @hopeful33250 and others in this discussion can attest to some good days along with the bad and will have some helpful input for you on this newish diagnosis.

Has this been the worst year because of trying to accept the diagnosis, symptoms you've experienced, a lot of bad days? All of these?

REPLY
jflamini | @jflamini | 1 day ago
In reply to @mimi25 "Hi, I have been diagnosed for almost 1 year . It has been the worst year..." + (show)
@mimi25

Hi, I have been diagnosed for almost 1 year . It has been the worst year ever. I had a hard time accepting the diagnosis and was diagnosed late, so have been playing catch up. I read about Parkinson's patients having good days.. Do they ever come??

Jump to this post

The good days do come. Make sure you are getting optimal guidance by seeing a neurologist who is also a movement disorder specialist. Also, stay active with some level of exercise 6 or 7 days a week. Yoga, chair yoga, cycling, walking, running, swimming, weight training, tai chi, etc. Whatever works for you at whatever level of intensity works for you, just keep moving.

Best wishes, Joe

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago
In reply to @mimi25 "Hi, I have been diagnosed for almost 1 year . It has been the worst year..." + (show)
@mimi25

Hi, I have been diagnosed for almost 1 year . It has been the worst year ever. I had a hard time accepting the diagnosis and was diagnosed late, so have been playing catch up. I read about Parkinson's patients having good days.. Do they ever come??

Jump to this post

Hi @mimi25 and welcome to the Parkinson's support group on Mayo Connect. Most of us can understand your feelings about the difficulty of accepting a PD diagnosis. It does change your world, doesn't it?

Here are some ways that others have adjusted to this "new normal." First, it is important to connect with a good movement disorder specialist. These are neurologists who specialize in disorders that affect movement such as PD. Taking the medication is important as the PD meds tend to supply your brain with the dopamine that is missing from your brain. The next important way to adjust is to exercise. Exercise is considered as important as taking medication. As @jflamini mentioned in his post, pick an exercise you enjoy. There are lots of chair exercise videos that you can access free of charge on YouTube, including chair yoga and Tai Chi. If you enjoy swimming that is great too!

As you begin to be proactive with this disorder, you will feel less like a victim and find yourself feeling physically and emotionally better.

What are your most bothersome symptoms right now?

REPLY
View MoreView Less
Please sign in or register to post a reply.