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.

Teresa, Volunteer Mentor | @hopeful33250 | Apr 9 6:58am

In reply to @brinkmanlc4440 "I was diagnosed with early stages of Parkinson’s January 2 of this year. I’ve been trying..." + (show)

Hello @brinkmanlc4440 and welcome to Mayo Clinic Connect. I certainly can understand the problems you are having. I also started taking C/L (carbidopa/levodopa) while I was still working. My doctor told me to take it with low-protein meals (which resulted in less nausea), and she also titrated my dose. The titration went like this: I began taking 1/2 tablet each day for a week, then increased by 1/2 tablet each week until I reached 3 full tablets a day. It took a while, but the side effects were greatly reduced.

I have a concern that you went off the drug. Did you consult with your doctor beforehand? There are lots of other PD drugs that can help you.

What is your most bothersome PD symptom right now?

nova11723 | @nova11723 | Apr 9 7:43pm

In reply to @louismines "@nova11723 lucky you" + (show)

@louismines Nah, just trying to stay positive. I would not consider anybody who has this disease as "lucky."

teddieann | @teddieann | Apr 10 11:19am

In reply to @hopeful33250 "Hello @teddieann and welcome to the PD support group on Mayo Clinic Connect. I agree with..." + (show)

@hopeful33250
At age 75 I have of course experienced many many negativesymptoms over the course of my life. I find it challenging to figure out whether a particular symptom is PD or something else. I have lots of new things happening such as random stabbing feelings all over my body and extreme shortness of breath even when just sitting and reading. I think I am going to make a list of everything that I have noticed and bring it to my next neurology appointment.
I think the most troubling symptom I am having now is a balance issue. I sometimes walk down the hall and literally bump into the wall even though I thought I was walking down the middle.
Take care, everyone.
Teddie

brinkmanlc4440 | @brinkmanlc4440 | Apr 10 11:23am

In reply to @hopeful33250 "Hello @brinkmanlc4440 and welcome to Mayo Clinic Connect. I certainly can understand the problems you are..." + (show)

@hopeful33250 no I didn't tell my doctor that I wasn't taking it, but did let her know of the nausea etc. I work for a tax company and as of April 15th will no longer be working. I'll be at home more and figured I'd start again. Thanks for the information. I'm going to try the titration you described. Thank you for the input!

Teresa, Volunteer Mentor | @hopeful33250 | Apr 10 8:28pm

In reply to @teddieann "@hopeful33250 At age 75 I have of course experienced many many negativesymptoms over the course of..." + (show)

@teddieann

Making a list of your most troublesome symptoms is a great idea! This will help make your appointment productive.

Balance issues are very common with PD. Have you been referred for physical therapy? Physical therapy can be really helpful. At your appointment you might ask about physical therapy.

When is your next appointment? Given your many symptoms, it might be wise to call the neurologist and mention these issues, especially the stabbing pain and the shortness of breath. Do you have a history of heart or lung issues?

If you aren't able to reach the neurologist, contact your PCP and mention these problems.

Teresa, Volunteer Mentor | @hopeful33250 | Apr 10 8:32pm

In reply to @brinkmanlc4440 "@hopeful33250 no I didn't tell my doctor that I wasn't taking it, but did let her..." + (show)

@brinkmanlc4440

Will you post again and let me know how you are doing?

Also, it would be wise to let your neurologist know about your titration schedule.

spatase | @spatase | Apr 12 1:17pm

In reply to @colleenyoung "Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth: I'd like to..." + (show)

@colleenyoung Hi Colleen. I'd like to join. My dearest husband age 75 was diagnosed with Parkinson's in 2025. We both are struggling to understand how to adapt to a new normal but so far we have no pattern and limited guidance from our medical team. We'd like to share and learn. Thank you.

Teresa, Volunteer Mentor | @hopeful33250 | Apr 13 7:14am

In reply to @spatase "@colleenyoung Hi Colleen. I'd like to join. My dearest husband age 75 was diagnosed with Parkinson's..." + (show)

Hello @spatase and welcome to the Parkinson's (PD) support group on Mayo Clinic Connect. Getting information and learning how to live with a new diagnosis, like PD, can be challenging.

As your husband was diagnosed last year, I'm thinking he has begun to take medication. Is my understanding correct? If so, is the medication helping his symptoms?

When I was diagnosed, my most troublesome symptoms were balance problems, a staggering gait, and a soft voice, among other problems. What are your husband's most bothersome symptoms now?

joeraleigh | @joeraleigh | Apr 13 5:35pm

Joe from Raleigh, NC. First symptoms ~ age 60 (4 yrs ago) w/ difficulty typing on phone and brushing teeth in am.. now 4 yrs later mainly just a shake or rattle as I call it in my right hand when I am walking and some while sitting but less noticeable.

I am interested in potential therapies (PT, and/or Pharma) that can reduce or slow disease progression (like everyone else on this site I am sure)

Teresa, Volunteer Mentor | @hopeful33250 | Apr 13 7:33pm

In reply to @joeraleigh "Joe from Raleigh, NC. First symptoms ~ age 60 (4 yrs ago) w/ difficulty typing on..." + (show)

Hello @joeraleigh, and welcome to the Parkinson's support group on Mayo Clinic Connect. It sounds like you have been dealing with these symptoms for several years now. Have you met with a movement disorder specialist regarding your symptoms?

There are many medications and Physical Therapy programs that can help with PD symptoms. Here is some information about the importance of exercise, from the Parkinson's Foundation website:
--https://www.parkinson.org/living-with-parkinsons/treatment/exercise

The physical therapy program that is effective for treating PD patients is called Big and Loud.

Has any medication or physical therapy been prescribed for you?