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

@jatonlouise How did you get diagnosed with a sleep disorder? The only sleep disorder I know I have is sleep apnea and I wear a CPAP mask to sleep every night which helps with that.

My husband’s first signs were his right hand emoting. He would put his other hand over it to hid it. He has had it for 9 years. Of course, he has progressed further but continues to work out at least 4-5 x a week. Takes his carbidopa levodopa 4 x a day.

@SusanEllen66
Sorry to hear that. Hope you can find relief.

@southwest
The 6 min walk test by pulmonary medicine is primarily to assess your ability to maintain a safe oxygen saturation while exerting yourself. If it drops below 88% it suggests a possible problem with your lungs - thankfully passing the test should give you some comfort. I agree though - it doesn't explain the profound fatigue - like hitting a wall - after exertion noted with neurodegenerative disease. Physicians should rule out other potential causes of fatigue before settling on a particular diagnosis - especially when the symptoms CAN have so many potential causes. My cardiologist ruled out any serious cardiac causes for my fatigue and air hunger with exertion - it now looks related to the effects of my Primary Autonomic Nervous System Failure and early PD. Ongoing monitoring by my cadre of physicians will continue in order to identify problems while they are small rather than debilitating. Good luck to you and know you are not alone in this.

@js2022 REM means Rapid Eye Movement and meansto pretty much what is says -It's a phase of sleeep where you are dreaming and your your eyes are moving about rapidly.while you're dreaming Apparenly only h]mammals and bird are known to do this. The term REM Disorder refers to when a person is asleep, and dreamareing, and they are physically acting out their dream. I dreamed someone was trying to grab my baby (now a strapping lad who will soon be 50 but in my drea he was an infant) My husband is used to me talking (but unintelliglbly) and thrashing about in the bed. He normally just tries to gently wake me up, or if my arms are thrashng about he may have to put a bit more musled into befoe I calm down. In this particular case, as I was dreaaming that someone was trying to steal my baby , when I felt his hand on my arm, I incorporated that into my drea (because some one really was grabbing my arm) so I tried to bite his hand to make him leet go. Fortunatly over the past 58 years, he has learned to protect himself from the deranged creature thata I bcome when I dream and he escaped my wrath. I don'tknow if there's a test for it - the fact that you do have dreams and that you physically act them out is an automatic diagnosis. Sleep walking is proably a REM discorder.My neurologiist prescribed.a sleeping pill in case they got out of control, and so far, I've not needed itf. sometimes I do physicalyl enactt things my brain thought I was experiencing and my body followed Mr. Brain's instrctions on what it should do about the dangers. I can imagine how some folks might be at risk if their spouse gets totally out of control.Of course sleep walking is especiallly scary because you may wake up and your spouse is nowhere to be found, or you're the one with REM Sleep Disoder and you leave your house and wake up some where and don't have a clue why you're there or how you got there. If what you are experiencing is troublesome, then discuss it with your neurologist There may be other things to help calm it down . and may you have only sweet dreams.

You might want to keep a log of things that you suspect could be Parkinson's and have your doctor refer you to a neurologist if the frequency and severity of any symptoms are increasing. I appreciate that you don't want to be constantly fretting about it because at the moment there's no way you can prevent it. But in my case, it took a very long tmie to get a diagnosis and I was bed-ridden for a while, and that pushed me. If I had it to do over again, I don't know how I would have handled it. My primary care doctor was doing all the right things; he checked all thouse maladies that afflict folks whoa are als old as dirt and in ceach case found that I had a slight case of the malady - high blood pressure (but jsut a tiny bit);asthma (but just a tiny bit);high chloressterol butjust a tiny bit.I was alsread hypothyroid and taking thyroxin and had been for decades so it seemed to be under control. If I hadn't had PD, any one of those maladies wuld have slowed me down a bit but the meds for them were managine thos particiular symptoms very well, but despite all of that, I . I contined to get more and more severely fatigued. There was nothing that sshouted PD. I hope they make soe progress in developing a definitive test for PD, because if you watch this Support Group awhile you'll see that lots and lots of people have semilar stories.The're doing soe research on whether dogs can detect the substance that indicated someone has PD. It's not as wild an idea as it sonds. Dog can be trained to sniff our drugs. A woman who is a "super-smeller - thos folks who have a particularly acute sense sof smell, had noticed that her husband had sstarted smelling differently around the time he developed PD. They have identified the source of the smell and confirmed that this woman (who was also a nurse) reall could differentiate between t-shirts worn by people who had PD and those worn bey people who don't. They tested her with Tshirts from 40 people. Some and PD and some didn't. She got 39 of the shirts right. but 8 months later, a man who had participated in the experiment was diasgnosed with PD, so she didn't get it wrong! Others are working on blood tests that can yield a definitiv diagnosis. Just imagine how fantastic that would be! It could save alot of resources that go into getting a diagnosis ( I plalyed "Stump the Doctors" 3 times and 3 different hospitals before I got my diagnosis). Imagine the cost of that. and the frustration of the patients. as well as the doctors. Or,if I were capable of a succinct response , I suppose it boils down to:1) keyp and eye on it: 2) try to gather as much data as you can on what you exprience bcause you never know wwht may make something click and r. Parkinson is dragged kicking and screaming our of his hidey-hole and you can get your badly needed l-dopa and h a better life and all that extra time and expensse spsent on thosee 2 extra efforts to diagnose you can be used to diagnose and treat other folks. Would n't that be nice?!!

@bmfoster
Thank you for your insights. I just find it infinitely ironic that I can pass a test without being able to carry out the test task for the designated length. I had been able to walk for six minutes two years before, with fatigue at the end only a fraction of what I felt at the beginning of the second test.
One year before, the sleep doctor sent me to a neurologist (general) who watched me walk for 6 feet or so and judged I do not have Parkinsons, and said if I have fatigue, I should go back to the sleep doctor. Neither doctor had an idea to send me to a movement disorder doc. After I 'passed' the six minute walk I asked my primary care to send me to a neurology workup, where the doctor luckily for me turned out to be a movement disorder doc, who said there was reason to give me a DAT scan, and here I am.

Now I know I had been manifesting PD symptoms for some 8 years, but none of the docs I saw over that time, for my complaints of stiffness and fatigue,
had any notion of what to do except do tests over and over in their respective specialties. Yes I have anger over this.

@southwest
Your story is very moving and I'm afraid more common than reported. It sounds like you are on the right track now. Good luck to you.