Looking Back - Your Early Warning Signs

Tagging @stelal @hopeful33250 @tko54 @eojeda1 @mitcholson @tab70 to join this conversation and share what they or a loved one's early warning signs for Parkinson's may have been, now with the ability of looking back.

So far my smell and balance are fine. I do have random bouts of bad-but-brief vertigo, but I've had those for decades. I won't list the myriad of odd symptoms I experience on a daily basis--but they're all things I've been experiencing since I was a teenager. Perhaps that's a good sign that they're not PD-related. Hard to say.

The only movement-related thing I've noticed is something I've had my entire life: body parts randomly jerking. So, for example, an arm or leg might suddenly jerk, or my jaw will snap shut. But, I've had these things ever since I was a teenager, and doctors never seemed concerned.

I've relayed all this (and other symptoms) to the neurologist, so she's aware. I've also been telling doctors about all these other symptoms for decades, but none have seemed concerned nor investigated them.

For me, the early warning signs of PD were balance which caused me to swerve when I walked.
This was especially true in the late afternoon when I was fatigued. There was also "freezing" in doorways, which was frustrating because I just didn't know why I couldn't move forward. A soft voice was also a problem and noticeable to other people.

When I began taking Carbidopa/Levodopa many of these symptoms lessened or were no longer a problem.

My mom had Parkinson's her last 10 years. She passed away 15 years ago. My neurologist told me to think optimistic and live as Healthy a life as I can. He told me not to worry about it. I have concerns also. Sincerely. Prayers. Betsy GG. In SW Michigan 😇✝️🛐🙏🙏🙏

One thing you can be on the lookout for is orthostatic hypotension (postural drops in b/p) or postprandial hypotension (b/p drops after eating). You can google how to take your b/p to check for OH online. Dysautonomia symptoms can be related to Parkinsons and related diseases. Hoping and praying your REM Sleep Disorder does not progress into something more serious. I don’t know if it’s better to know about the prospect of other disorders or just be unaware, since there’s nothing you can do about it either way. As mentioned, live your life with gusto, and don’t let worry take a foothold.

I already have OH... and have for many years. So, yeah, just one of MANY worrying symptoms.

I never thought much of all the other little things... orthostatic hypotension, insomnia, bouts of vertigo, occasional depression, etc. until the RBD was diagnosed and the Parkinson's possibility came into the picture.

I have OH and postprandial hypotension. Also, tremor, sore, stiff hands, restless legs, daytime grogginess, insomnia, urinary symptoms, and palpitations. I just had a Syn-One test for synucleinopathy by skin biopsy. My concern is MSA, which is even worse than PD. The test is suppose to be fairly accurate for PD MSA, PAF, and I think for REM sleep disorder too. Since they already dxed you with RBD that test may not offer you any usable info against PD. I pray that soon they will have treatments for all of these diseases, I’ve read there are some promising things in the pipeline, and for someone who is years away from getting sick, and if you do, there may be good treatments maybe even a CURE! That would be a miracle in my opinion. How did you figure out you needed to get tested for RBD? I’ve read lots of folks who have it, thought it was just the way they were and not a problem.

How long did you take the medication before you saw improvement?

The results came quite quickly, @janet42. My doctor suggested that I titrate the medication (in other words, start slowly). The first week I just took 1/2 a pill, once a day. The second week, I took 1/2 a pill, twice daily. During the second week, I began to notice when the medication was wearing off, so I decided (before the third week) to take 1/2 pill three times a day. There was a real difference in my movements during that week. I describe it as if my brain and my lower extremities were more fully connected.

Are you just at the beginning stages of treatment, Janet?

I was diagnosed on May 8. Started with 1 Carbidopa and Levodopa tablet for 3 days. I’m now up to 3 tablets 3 x a day with no real side effects. Just wondering if I need to call my doc and up the dose? No major improvement with mobility yet.