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

Please go to the Parkinson Voice Project web site at ParkinsonVoiceProject.org. From there you can find a Speech Pathologist that is trained in SPEAK OUT! Click on Find a SPEAK OUT! under Our Program. Then find your state on the list. If you have a Therapy and Research Center in your state you can receive treatment for NO charge. And you can receive treatment either virtually or in person. If your state does not have the T and R Center then check the middle column and look for Certified Speech Pathologists in your state. 90% pf people with Parkinsons will have speech and swallowing issues. We use the same muscles that we use to talk so this is really very important. It is important to participate in this program. PVP is a non profit organization in Richardson, Texas. This is the only organization in the world where you can get this specialized treatment. The program is proven to be effective. When you are looking at the website )1 look at Testimonials and 2) under Education and Training watch the What is Parkinsons video. It is excellent.
https://parkinsonvoiceproject.org/program/find-a-provider/
https://parkinsonvoiceproject.org/program/testimonials/
https://parkinsonvoiceproject.org/education/what-is-parkinsons/

If you have any questions let me know.

@cmccarthy1115 @ethel2017

Here is a link to a YouTube video that provides some vocal exercises for those with PD. Until you are able to meet with a speech therapist, these exercises may be helpful,
https://www.youtube.com/results?search_query=voice+therapy+exercises+for+PD

Thank you I will look into the Voice program

Hello @lyndavdp and @susanarch, and welcome to the PD support group on Mayo Connect. I can understand your need for information and support as you are dealing with a PD diagnosis.

First, @lyndavdp, there are great physical therapies for Parkinson's. I recommend you ask your doctor for a referral to a physical therapist who specializes in PD. There is a great program, Big and Loud (https://www.lsvtglobal.com/LSVTBIG), which addresses the movement and the voice problems associated with a Parkinson's diagnosis. Exercise, along with medication, is important to delay disability associated with PD. Have you been prescribed medication? If so, is it helping with your symptoms?

@susanarch, I'm so glad you are helping your husband with this new health challenge. Learning all you can is important. Has your husband begun medication yet? What about physical therapy?

To you both, I recommend that you check out the Davis Phinney Foundation website. They have lots of videos where PD patients and neurologists speak on many issues related to Parkinson's. Here is a link to the website,
https://davisphinneyfoundation.org/
If you go to the website, you will find numerous resources for patients and videos of webinars. These can be helpful in your understanding of this neurological disorder.

When I was diagnosed, my main symptoms were a gait disorder (when I was tired, I couldn't walk straight, but veered to the right side). I also had balance problems and a very soft voice. What symptoms led you to see a neurologist?

I just joined. My husband has recently been diagnosed with PD. Also, I just lost a dear friend to the disease. I am in the research stage - learning all I can and buying enough equipment to start my own medical supply store! I know I'm in for the long haul.

Hi, My name is Rhonda and I also have Parkinsons. I was diagnosed about 7 years ago. Right now you and I have similar situations. I am probably going to have to have knee surgery. I can't exercise now either. I have also taken the LSVT BIG program. Have you heard of Parkinson Voice Project? I want to give you some information about this program that you can do online or in person. This program will help you regain and retain your ability to speak and swallow. And it is never too early to start SPEAK OUT! therapy. This is a program offered to people with PD for no charge. Please go to ParkinsonVoiceProject.org and find a Speech Language Pathologist trained in SPEAK OUT! Most of them offer virtual or in person treatment. 90% of people with Parkinson Disease will have speech or swallowing issues. Even if you are not having any problems you still need to go through this program. Remember, there is no charge and no bills to your insurance. PVP is a non profit organization and the only company in the world to offer this program. I went through the program in 2020 and my voice remains strong. The program is proven to be effective I continue to practice nearly daily. I can mail you a brochure if you would like to share your mailing address. Please visit their website at ParkinsonVoiceProject.org. There are links to click on about half way down the page. A really good one is "What is Parkinson's" video. Another would help you to find a Speak Out Provider in your area. And as long as you are treated at a Therapy and Research Center there will be no charge. And at the top of the page under "Our Program" go to Testimonials and listen to what others have to say about the program.

Anyone have any recommendations for exercise or if physio is helpful to get a routine going of movement and exercise?

Welcome to the site.

@ecarvalho, welcome to Mayo Clinic Connect. If you want to join an online support group about Parkinson's, you've come to the right plac.

Do you or a loved one have Parkinson's? If so, when was the diagnosis?