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

I go to silver sneakers three times a week and do the stuff that I can, and limit stuff that makes me dizzy.

@barryl
It sounds like you are doing as much physical activity as your heart condition allows. I also have heart problems as well as problems with vertigo, so I somewhat understand some of your limitations.

I would encourage you to do what you can. Have you been referred to Big and Loud? This is a physical therapy program specifically developed for those of us with PD. This helps both the physical problems and the speech problems. Here is a description of the program: https://www.lsvtglobal.com/LSVTBIG.

I would also encourage you to check out the Davis Phinney website. The Davis Phinney organization is devoted to research and education for PD patients. There are many helpful videos that deal with the symptoms of PD. Here is a link to its website, https://davisphinneyfoundation.org/.

Complex medical issues can make you feel overwhelmed. Education, support, and activity can help.

I've been diagnosed with Parkinson's for about 2 years. I also have Scoliosis and Dystonia. I have a DBS implanted in 2020. It's controlling my tremors, but I'm only 63 and generations of women in my family live from 93 to 98. I'm scared. I don't want 30 more years of an incurable, progressive disease.

I've recently been diagnosed with PD following a SPECT and PET scan.
I have great difficulty walking more than a short distance because my left leg goes stiff and restricts my movement.
Thankfully, sleep disturbances and the inability to stop my brain from working overtime has subsided since the start of treatment with LDopa.
I struggle with believing this is happening to me and I'm scared of what may lie ahead.
I've had to stop doing things I love. Horse riding three times a week, hiking, biking, driving. I go to yoga class twice a week and have a wonderful instructor who is committed to helping me through this journey.
I feel like I have to start a whole new life and it's not one I had expected it planned for.
I'm generally pretty positive but there are times ...!
I'd be interested to learn what to expect in the months and hopefully years, ahead.

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?

@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. 🫂💕

@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.

@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.

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

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?