Some facts you may not know about Parkinson's Disease- Please share

Parkinson's is a notoriously difficult disease to diagnose. In my experience with Casper, it's a function of doctor's not listening and having their minds already made up about a diagnosis before they hear all of the information, and doctors not knowing what they are seeing. It's mixed up with impressions they turn into facts before doing tests, and then not doing tests because they have a diagnosis they are going to work from. And it's complicated by doctors taking the diagnosis from one doctor and assuming it must be correct- because a fellow specialist could not possibly be mistaken.

The problem with that is Parkinson's need treatment early, not late.in many cases, by the time a diagnosis is made it's years into the disease and the brain has lost almost all the dopamine it will ever have. That loss is irreversible. Meds only work in earlier stages in some patients- a late diagnosis means no treatment will work at all. And with Lewy Body Disease it means permanent loss of cognition that might have been slowed, even a little, with an earlier diagnosis. Those who are not diagnosed early and correctly are never going to make up for lost time. It's not like chemo you can make stronger to battle a tumor- it a brain that is disintegrating. You can't sew it back together or medicate it back to "normal." You can't remove Lewy Bodies that proliferate.

So here are the things we saw and experienced, and some other things that are early warning signs of Parkinson's:

Casper before she lost her smile

• Neck pain, especially in women. Casper had degenerative joint disease, and was telling doctors years ago that her neck hurt. Our doctor did multiple scans looking for a problem. Here's the issue: you can't see Parkinson's. The pain is from battling early tremors that the patient, in this case Casper, does not even recognize are occurring. She unconsciously controlled them with adding tension to her neck and shoulders. Voila! Neck pain.
• Mid day exhaustion. That's a hallmark of Lewy Body Disease, and also a PD symptom. In Lewy Body it's a function of the illness. In PD it's a function of being tired of battling those pesky tremors. In any case nobody should be allowed to be so tired they have to sleep in the middle of the day. If they do and all the labs are normal- look again. And ask a LOT of questions. And ask the family. Sometimes patients are not great historians or feel stupid admitting they are napping.
• Memory loss. I know- we all have "senior moments" and are embarrassed that menopause might be affecting us. But if your loved one can't tell you what happened that day, or forgets consistently what day or month or year it is, listen. Very carefully. Folks who recognize that they are forgetting things learn creative ways to compensate. Most of us can and do remember what day and date and year it is. Put the calendar and phone away, then ask casually what day it is. Parkinson's, and especially Lewy Body, steals memory at a frightening pace sometimes.
• Shuffling. I noticed it in Casper long before her diagnosis. We came home form a trip to Texas, which had multiple moments where she was not clear about her memory, and I was behind her in the walk to the parking lot. Her foot dragged with about every other step. I silenced myself (that is almost impossible for me) and watched. After about 200 yards I finally mentioned it. She responded that her shoe must not be on right. I watched the rest of the night, and we saw the doctor two days later. That was when we finally started moving toward the right diagnosis. Shuffling even a doc can understand.
• Loss of expression. The Casper I fell in love with had an imp of a smile. It said "I love you" louder than anything else. Her eyes locked on me and she beamed at me. Slowly, imperceptibly, that went away. Almost before I recognized it. She was busy being misdiagnosed as bipolar or depressed, but really what it was we were seeing was "the mask." The connection between emotion and facial muscles is stolen by PD, and the patient assumes almost a hard expression. It was useful for scaring boyfriends of our three girls, but they were actually the ones to mention it to me. I had acclimated to it. One look back at pictures, and it was instantly clear. She had no emotion on her face.
• Depression.  This is a fun one. PD creates depression. The loss of dopamine, a vital brain component, creates depression all by itself. Add in chronic and unrelenting pain from tremors and later from falls, the loss of independence, the loss of work, regular activities, driving- all the things that make us "us"- who wouldn't be depressed? And yet... we faced one doc after another who attributed all of the symptoms to depression. Just treat it they said. Get her stable- it will all go away. Depression causes memory issues- it's not her brain- it's depression! Ummm.. no. It's PD. And the comorbid depression that is part and parcel of PD. (I love that word- comorbidity).We treated depression and bipolar. And you know what? It was neither. It's PD with Lewy Body. And they missed the window to do active treatment as a result. Yes, we are using a lot of meds, and battling the depression, but it was not causing the sleepiness, the memory loss, the shuffling, the pain- it was a result of PD. Just like all of those were. Undiagnosed PD. My favorite doc was the neuro who told us it was "all in her head." It was- millions of LBD creatures, like tiny Tribbles, draining the dopamine with a fire hose, and laughing as one doc after another blamed Casper for her condition.
• Loss of smell. Who knew/ Who would notice their sense of smell going away? Casper used to be a great cook. Everything Southern was her forte. Biscuits, fried everything, pork chops, coleslaw my youngest begs for... She loved it. Over time, her appetite changed. I noticed that, but not the reason for it. We like our food because of the ability to smell it as we eat. Casper could no longer smell, but really did not know it. She smelled stuff that was not real- smoke, fire, burning, perfume- but real smells were not there. I was awakened multiple times to look for fires that did not exist. I assumed it was a bad dream. It was really the Lewy Bodies and their psychotic features visiting in the night. That plus the loss of smell from the PD. The perfect storm. And I was so tired I didn't notice it. What I should have done was written it down and told the doctor. My bad. Now I kkeep a written log on my computer. Every visit has a current med list, lab results, and symptoms that have occurred with the dates. Do not ignore me- I will make you listen and put it in the medical record!
• Trouble sleeping. Again- "It's part of the change of life." Really? When your wife was menopausal did she hit you and scream in her sleep? Did you build a pillow wall to protect yourself? Did you go to work so tired you needed Visine to look like you were not on a bender last night? There is an evil known as Rapid Eye Movement Sleep Disorder and its more evil twin Rapid Eye Movement Sleep Behavioral Disorder. Google them. They are ugly. The sleeping partner may awaken as they are being battered. Or to screaming that rivals Alfred Hitchcock's finest. Or kicking. Or Restless Leg Syndrome that resembles punting practice.PD does not cause the insomnia that accompanies stress or menopause (and believe me- I so know those symptoms!)- It causes chaos in your bedroom. Night after night. Despite sleeper meds and pillows and all. Your loved one will sleep but awaken exhausted and sore. You will not sleep at all and will go to work exhausted and bruised. That is PD. Do NOT let a doctor tell you this is anywhere near normal. Smart phones and video tell the tale.
• Constipation. Okay, I know. Gross. But really- you do not change your diet and suddenly you are in a really bad way. You are using every OTC in the pharmacy. You finally get things moving and suddenly you need a diaper because things move and you can't walk that fast...It's a real issue. It causes pain. not mild discomfort. It's not "oh, I need some veggies." This is serious. And chronic. And came out of nowhere. And you are too embarrassed to tell your doc, because he's going to assume you are of a certain age and need prune juice. Tell him what it is really like, and how often. The regimen you have tried without success. This is indeed PD. We had no less than three neuros tell us that was not a brain related issue. They were wrong. Very, very wrong.
• Soft or low voice. You live with someone long enough- you acclimate. If they start to talk more softly, what do you do? You listen better. you pay attention more. Do you notice that their speech has changed? Probably not. Casper was almost to a whisper. But she was sleeping more, moving less- I rationalized that she was used to quiet and I was too loud and rambunctious. I usually am! This is important folks- if you are straining to hear someone- something is wrong.
• Handwriting changes. Casper had clear and beautiful handwriting. I never have, our staff tell me I am using my own font! Suddenly, she was needing help spelling words and getting letters in order and the letters were tinier and tinier. That is classic PD. And nobody heard us. Not until the final; doc, who we still see today.

There are many more- but these will tell you some of what to look for. Some tips:

1. Write it down! All of it!
2. Go with your loved one to MD appointments. Let them do the talking- then add your observations.  Bring a copy for the record.
3. Take notes at appointments.
4. Keep current- ask for tests. Ask about meds. You are in charge!
5. Insist that the doc justify any diagnosis- and provide the research.