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

@jfayesj0urney My spouse was having issues with seizures as well as his Parkinsons. He has had a few seizures that landed him in the ER. Once his medications starting working it helped to control most of the time. Be glad that they found them how they did. It is hard for my spouse as he is so tired and add the seizures meds ..it really tires him out. Prayers and hugs

Hi,
My name is Joe. I am 80 years old. I had open heart surgery back in 2011 and have recently been diagnoses with Lewey body dementia associated with Parkinson symptoms that go with that diagnosis. Due to my last diagnosis, I have serious balance issues and have progressing dementia. I am glad to be on this support group and looking forward to sharing my issues with you and hearing your issues that concern you as well.

My name is Jan, age 77. Diagnosed with Parkinsonism 2 years ago and recently diagnosed with Parkinson's Disease. Still don't know the difference but doesn't matter at this point. A recent EEG of the brain showed abnormal electrical activity and I'm now on seizure medication. Confused about that also. I'm not scared of this disease, telling myself "well, why NOT me?" I try to walk every day but the exhaustion is overpowering. Would love to connect with others on how they journey through this disease.

Hi,
My name is Joe. I am 80 years old. I had open heart surgery back in 2011 and have recently been diagnoses with Lewey body dementia associated with Parkinson symptoms that go with that diagnosis. Due to my last diagnosis, I have serious balance issues and have progressing dementia. I am glad to be on this support group and looking forward to sharing my issues with you and hearing your issues that concern you as well.

@hopeful33250
His doctor wants to rule out Myotisis so we have an upcoming test then she wants to talk about botox injections. The neck drop may be from another muscle disorder

@tower

Perhaps another member may answer your question about the neck drop. That is something I have not had with PD.

Here are some posts on Connect discussing neck drop: https://connect.mayoclinic.org/search/

What does his neurologist say about it? I wonder if it is from the PD or something else?

Thank you. My husband’s symptoms are still mild, just a little slow walking. We noticed and suggested Parkinson’s to our primary care physician who thought it was natural aging. She referred us to a neurologist and lots of tests including MRI and DatScan that confirmed what we had already thought might be Parkinson’s. We have been proactive with a plan of how we’re going to live with this disease. He is taking carbidopa/levidopa, has joined a gym with a personal trainer 3 times a week, and have bought a senior-friendly treadmill for home exercise. We’re are prepared for a long journey! I know we’ll need support along the way. Thank you!

First of all, rember that you're our own advocate. Learn everything you can online...don't settloe for one description; dig as deep as you can: Mayo, Cleveland Clinic; AI; books from MJFox Foundation, from Phinney, from JAMA. Search for Parkinson's groups and Local Branches...there's lots out there, but you have to fid it yourself, then bring it up to your/his Motion Disorder Neurologist. And there afe plenty of symptoms/side effects/parkinsonisms (Whatever they want to call it) that you need to know about: neurologistd will only treat Their specialty. Plan on accruing multiple doctors who treat the individual s/s/p 's that a MDS(Oh, mentor, comment o that, please)