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

I'm glad that you provided information about this program, @janetgeller9. I am looking forward to hearing more about this program. Please continue to share any questions or concerns you may have about PD.

I live in NYC. My husband’s PCP is at Mt. Sinai hospital, one of the most prominent hospitals in NYC. They have a Movement Disorder clinic that offers compressive care for Parkinson’s patients. His PCP referred us there and I’m hoping she’ll be involved in some way. As I stated, our first appointment is in June so I’ll know more after that.

I'm pleased to know that you found a comprehensive program, @janetgeller9. I would be interested in learning more about this. Is this a medical group that treats movement disorders?

They do. Even if they are fleeting. I try to make remember the good days so the others seem less frustrating!

I have been away from this group. It looks like I found a comprehensive program that deals with the medical, social/ emotional and exercise needs. The first appoint I was able to get is in June. I’ll have to wait and see.

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?

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

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?

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??

Thank you for your comments and suggestions.