And that’s part of the problem of raising awareness about this disease. There are as many as 30 percent of Parkies who don’t HAVE tremor. Or only have it rarely, like I did for some unknown reason on Christmas day.
But tremor is NOT the most debilitating symptom of Parkinson’s. It’s just the most NOTICEABLE! It’s the symptom people can point to and look at and say, “Ah ha! Lookit ‘im shake! He has Parkinson’s!”
WORSE than tremor is the postural instability. When you fall, break your hip, go into a nursing home and die, that’s MUCH worse than tremor.
WORSE than tremor is the rigidity! The tightness of your muscles causes pain and discomfort and makes the most seemingly simple things near impossible.
WORSE than tremor is the bradykinesia, or slowness of movement. I’d rather be shaky than have to walk ever… so… slowly… from… the… car… to… the… store… on… a… cold… rainy… January… afternoon.
And WORSE than tremor is the whole spectrum of Non-Motor Symptoms that come with .
You can find the article here . (You need a free membership to Medscape to read the whole thing, but it’s easy!)
Let’s take a brief look at each of these NMS’s. But first? A sandwich.
Now, shall we proceed?
Depression is a common NMS in PD with prevalence rate ranging from 7 to 76%. A recent review of 104 prevalence studies of depression in PD reported a weighted prevalence of major depression of 17% and a prevalence of minor depression and dysthymia of 22 and 13%, respectively.Depressive disorders may represent the first manifestation of PD years before the onset of motor symptoms.
I take Zoloft for mine, and most of the time it does the trick. There are days when I would be perfectly happy to sit and stare at a blank spot on a wall all day, but thankfully those days are rare.
Anxiety is frequent in the course of PD; however, studies examining this symptom in PD are limited. Anxiety affects nearly 40% of patients with PD. Like depression, it can be an off-period related phenomena and can respond to anti-Parkinsonian medicationbut can also predate motor symptoms by several years.
I don’t see myself as a particularly anxious person. In fact, I’m probably more laid back about stuff NOW than ever before!
Now, when you think about psychosis, right away you think about someone acting like a stark, raving lunatic. ‘Taint so, McGee!
The most common type of psychotic symptoms in PD are hallucinations and illusions. With a prevalence in treated PD patients of 15–40%,hallucinations may represent one of the strongest negative factors affecting the quality of life of both patients and caregivers. They have been associated with a worse prognosis of PD and a higher risk of dementia, nursing home placement and mortality. Delusions occur in up to 10% of patients, usually in addition to hallucinations and usually involve jealously, persecution and abandonment.
I’ve had hallucinations. I have them almost every day, where it looks like I see something moving out of the corner of my eye, I turn to look, nothing. I’ve seen lizards in the bathtub where there were no lizards. I’ve seen rabbits running away that turned into pieces of paper blowing in the wind. I saw a guy trying to flag down a car on the interstate who turned out to be nothing more than a shadow on an off ramp. I saw a chip in the enamel on my stove grow legs and crawl away. I’ve never taken acid, but I guess this is what it must sorta be like. I’ve had audio hallucinations. I’ve been awakened from sleep by the sounds of telephones we don’t have. I’ve heard someone in a cartoon dog voice say “Hello!” once.
I’ve had at least one delusion… once when Gail and I were traveling, I thought for SURE she was mad at me because we didn’t have time to do any shopping in the airport, and I snapped at her about it. She wasn’t mad at all!
Ya just deal with it.
I’ve already been told by my neurologist that I’m showing signs of . I still have all my wits about me, but I do stupid stuff like:
a. Getting a pill from my pill box, holding the pill under a stream of water instead of putting the water in a glass.
b. Getting a pill from the pill box. Filling the glass. Taking the pill. Empty the leftover water onto the counter and put the glass in the sink.
c. Ground up the coffee beans, poured them directly into Gail’s cup.
I’ve ALMOST brushed my teeth with Preparation H and gargled with aftershave.
The mean duration of PD before diagnosis of dementia is approximately 10 years. Recently, Hely and colleagues demonstrated that 83% of patients develop dementia after 20 years from disease onset. Interestingly, dementia occurred in almost every patient, even in those with a younger onset of disease.Indeed, even in early PD and in the early stages, subtle cognitive deficits can be identified, with patients exhibiting difficulty with frontal executive functioning.
Executive functioning the front part of the brain, responsible for planning actions and thinking them through. The part of the brain that is supposed to STOP you from getting water all over the bathroom because you put the shower nozzle on the floor and then turned on the shower before getting into the shower, sitting on your shower seat and closing the curtain.
As you can tell from today’s earlier entry, I still have very vivid dreams. And I have times where I’m awake but not sure if it’s reality or still the dream. But things aren’t as bad as they used to be.
Rapid eye movements behavior disorder consists of tonic/phasic muscle activity during atonia, coupled with vivid and usually frightening dreams. Patients normally present violent nonstereotyped complex movements that may cause self or partner injury. Its prevalence in PD patients ranges between 33 and 60%, with the variability being a result of different methods of patient selection and disorder ascertainment. In several studies has been demonstrated to be more frequent in the male than female gender, but the reasons for this male predominance are not yet known. It is now recognized that RBD may not only be associated with PD but can be a preclinical marker of an evolving Parkinsonian disorder. Although RBD is currently treated with clonazepam in small doses, the pathophysiology underlying RBD in same cases may involve a dopaminergic deficiency, given its association with PD.
This is why Gail and I no longer sleep in the same bed. I used to lash out in my dreams. The worst was when I gave her an elbow shiv to the spine one night. I would also kick, holler, talk, smack, punch the wall and other such fun stuff. Clonazepam has really helped, but 1mg didn’t do it. After a while on 1mg, I started smacking myself on the legs at night and hollering again. So he put me on 2mg, and nights are far more peaceful now. But I still have the wild dreams.
Impulse-control disorderss are characterized by the failure to resist an impulse, drive or temptation to perform an act that is harmful to the person or to others. It is important that ICDs are recognized because they may cause considerable distress to patients and caregivers, disastrous personal, financial and socio–familial consequences, and they appear to be significantly under-reported owing to the patients’ embarrassment to admit them.
Some of the more typical include hypersexuality, compulsive gambling, etc. I have no problem with those. But I do have a compulsion to buy things to make this website look better. Also, to spend money on trying to get my book about PD noticed. I’ve spent a lot of money on both. Then, I would forget I spent it and not mark it down on the checkbook register. That’s why the checkbook, the credit and debit cards are now under Gail’s control. It’s not like I have to ASK for money… but if I want to buy something, I have to tell her what it is and why I want it, and we mark it down immediately.
These are the functions that your central nervous system performs without your being aware of it… heartbeat, blood pressure, etc.
The PD-related autonomic symptoms include cardiovascular, gastrointestinal, urogenital and thermoregulatory dysfunction.
Constipation is a biggie. So is delayed gastric emptying (where you eat a sandwich and two hours later you’re still full). Dysphagia difficulty is swallowing is not only problematic but life threatening. In my case, as of last May anyway, my epiglottis was slow and sluggish and allowed food to get into my windpipe.
Drooling also falls into this category, as does urinary and sexual dysfunction. I wear adult absorbent undergarments, but so far I find myself to be more of a piddler than a gusher. And sex? Fuhgeddaboudit. It rarely even crosses my mind anymore. Gail and I are both at that point of life where a good cuddle, a hug and a kiss means just as much more, in fact that a romp in the hay.
Earlier in the course of my PD, from 2000 until about 2003, I noticed a decrease in my sense of smell. I don’t know if I’m just used to it now, but I can still smell things a problem when you sleep with a gassy border collie in your bedroom.
I don’t seem to have any serious visual problems, except for being more sensitive to light than I used to be.
Among the NMSs of PD, painful symptoms are frequently under-recognized and seldom treated. Pain is an important source of distress and disability for PD patients. A recent cross-sectional survey in a regional population in Norway reported that over 80% of patients with PD endure painful symptoms during the day.
Every day, every night. Pain. My left shoulder, although it’s better than it was before I had physical therapy last year, still is stiff and very sore. My neck is stiff and sore. I get painful cramps in both hands. Every freakin’ night, I get cramps in my lower legs and back. So, yeah. TELL me about the pain!
Now… all of these NMS are TREATABLE. But let’s look at what I’m taking NOW and then see what I would have to ADD to that to treat each of my NMS.
I currently take…
4 Stalevo 100mg (one pill 4 times a day) for my Parkinson’s. I was taking 4 Stalevo 125 mg before my deep brain stimulation.
2 clonazepam 1mg at bedtime for the REM Sleep Behavior Disorder.
1 Ambien 5mg to get me to sleep.
1 Metropolol 100mg for blood pressure
1 Lisinopril 10mg (it helps the Metropolol)
1 Zoloft 100mg for depression.
Including the Prilosec OTC I take ever morning, that’s 11 pills a day.
What would I have to add to treat all these NMS?
We’d have to add clozapine for the hallucinations. Then there’s this one…
Quetiapine represents the most commonly used antipsychotic treatment in PD patients. Quetiapine is well tolerated and has been indicated as the first drug of choice for treating psychosis in PD by the American Academy of Neurology’s task force in 2006.
Problem is, most of the drugs you give someone for treatment of psychosis tend to make the PD motor symptoms worse.
For the dementia…
…both donepezil (5–10 mg per day) and rivastigmine have been demonstrated to significantly improve cognitive scales (MMSE and AD Assessment Scale, cognitive sub-scale [ADAS]-cog scores), with only a mild worsening of motor symptoms (i.e., tremor) compared with placebo.
For the Impulse Control problem?
…clozapine, risperidone and quetiapine have been reported to help control ICDs; however, one controlled study of olanzapine has produced negative results. In addition valproate and lithium have been reported to help individual patients with ICDs.
In other words, I’d be a walking medicine cabinet.
As I told my neurologist during one of our first visits, the last thing I want to be is a “professional Parkinson’s patient” whose entire life revolves around what time to take the next pill… or set of pills. Given the choice, I’d rather just slip quietly away into whatever blissful world awaits the Parkinsonian demented while being very careful about not swallowing things into my windpipe or falling and breaking my hips.
Your mileage may vary.
So, why did we go through all this?
If you HAVE Parkinson’s disease in the advanced stages, you already know why. If you have early PD, consider it a “heads-up” on what to watch out for and things to discuss with your health care professional. If you’re a caregiver, same thing.
If you’re one of the people who thinks Parkinson’s disease is just “tremor” and that’s the worst of it… I hope you learned something. It’s not just shaky old people. It’s 1.5 million Americans, with 60-thousand new cases every year, and they’re getting younger and younger.
I never gave this shit a THOUGHT before late 1999. If I can make one person more aware about PD and make you care enough to donate to help fund Parkinson’s disease research, then I’ve done my job.