Looking Back - What Were Your Early Warning Signs of Parkinson's?

I did see a neurologist yesterday and he said to come back in 6 months. I have been falling and he said thats usually at the end. My speech has slowed (according to friends that dont see me very often), Im drooling and have an unsteady gate, handwriting is smaller and an effort and Ive lost coordination. Im 66 yo, btw. No tremors tho. i did not have any symptoms at all before...

First of all, I want to say thanks for sharing your story, my heart goes about to you! It’s challenging to navigate through the symptoms while trying to keep up with everything else going on in our lives. Having Parkinson’s Disease definitely changes plans for each of us.

I am 73 years old now, and was formally diagnosed with PD three months ago. I am a Vietnam Veteran and I seek medical care through the VA. My PD diagnosis came after the VA Neurologist at our local clinic sent me to have a DATScan performed. A DATScan is a type of brain scan that uses a radioactive drug to help diagnose Parkinsonian syndromes. It specifically visualizes the Dopamine transporters in the brain. The scan can help differentiate Parkinson’s from other conditions with similar symptoms. In my case, I have had Tremor in my hands for 9 years. But within the past 3 years the tremors have seemed to expand to other parts of the body. Sometimes subtle, I would have tremor in the legs at night, even my tongue had tremor just a few times. Also three years ago I had commented to my Primary Care Doctor that I had some trouble with swallowing. I also reported GERD. Further tests indicated I did have Moderate Dysmotility and Mild GERD. And then 2 years ago, I began to recognize that I had symptoms of Depression. My sleeping habits were not what they should be. All of what was happening to me are symptoms of PD. The DATScan came back with results indicating Parkinson’s, and my Neurologist started me on Carbidopa/Levodopa. I feel that I am in early stages, so me and my wife are now trying to evaluate how things are likely to change going forward and are actively making decisions with this information in mind. Another resource that we find very helpful is the Davis Phinney Foundation for Parkinson’s. The foundation produces informative videos, webinars, and Zoom meetings that are no cost to you, and on YouTube where I learn so much from other PD people like me with years of experience dealing with the disease. I highly recommend this forum as an option to help anyone with PD, or anyone who wants to learn more about symptoms that must be dealt with by PD patients, spouses, etc. PD affects people in various ways. My PD symptoms may be very different from those that you know. It helps me understand my disease, helps me prepare for what’s coming so that me and my wife can have the best life possible! I hope this makes sense to you, and I sincerely wish you the best!

How old is your husband? How long from when you saw signs until today? I feel for you.

I’m 68 and recently developed a right hand tremor. The doctor says it’s likely PD. I’m looking for others experiences and advice.

Get an appointment with a Movement Disorder Specialist Neurologist right away as it takes quite awhile to get in. And, see if your area has some type of Parkinsons Association. They have a lot of information. Best of luck.

Hello! It’s a little scary when you get that diagnosis! I assume it was your Neurologist that told you it was likely PD? Did he start you on medication? I was just diagnosed 3 months ago, and I’ve been trying to learn about the disease from various resources. If you can watch YouTube, there is a Davis Phinney Foundation that is focused on Parkinson’s Disease. They offer videos from doctors and medical professionals, webinars, panel discussions, etc. It’s an excellent resource. It you use AI for information, it’s very good too! I use ChatGPT to look up allot of information, I find it useful as well. I would say that you should be doing allot of reading and learning! Don’t panic!

Yes, my neurologist said it’s likely PD and prescribed the l-dopa replacing medication to see if it affects the tremor. He said if the medication reduces the tremor then it’s most likely PD I’ve been doing a lot of reading and yes, I use AI which I found very useful. I was disappointed that there aren’t more solutions to the various symptoms of Parkinson’s.

Yes….its a bummer for sure. I think that it’s all about managing symptoms from here on out. I try to learn about this disease, and I am learning. The YouTube channel I mentioned in the first message is really a good resource. I feel that the more I can learn, the better prepared me and my wife are going to be when things get worse. It’s disappointing, but don’t let it get you down!

Loss of sense of smell, profound fatigue, and poor walking and balance around 30 years before diagnosis, when many other symptoms began to make life difficult. No tremor. Approximately 30% of patients don’t have a tremor and supposedly it progresses faster but I’m still going 😊

Also a couple of good podcasts from people with PD are 2 Parkies in a Pod and Movers and Shakers.