Tuesday, January 26, 2016

Non-Motor symptoms of Parkinson's Disease, and Things That Seem to Help for Most of Them

Here is a modified text of a presentation I made to our support group’s January meeting. This is a huge topic, and the attempt here is to provide an overview. Thanks to the Parkinson's Disease Foundation's website, which I relied on heavily in putting this together.

Everybody knows Parkinson’s Disease is an affliction of the brain which interferes with “motor” or “movement” abilities, right? The truth is actually more complicated. PD also packs a number of potent  non-motor symptoms, affecting the brain and other parts of the body.

The list of non-motor symptoms of PD is as long as it is dispiriting. The Parkinson’s Disease Foundation breaks the non-motor symptoms into two groups “Early” and “Other”. Some non-motor symptoms can pre-date motor problems and diagnosis a decade before motor symptoms show up. Early non-motor symptoms of Parkinson’s include:

• Loss of sense of smell
• Constipation
• Mood disorders (Depression)
• REM behavior disorder (Acting out vivid dreams)
• Orthostatic hypotension (Low blood pressure when standing up, at times resulting in fainting.)

Just for fun, let’s poll the group. Before you were diagnosed, how many had

Smell  disruption/dysfunction?


Depression or apathy?

REM behavior disorder?

Orthostatic hypertension?

(Boy, that was fun. Many hands went up for each symptom)

One or more of these early symptoms is not seen as a a sure sign that a person will develop Parkinson’s, but there is strong correlation, and these frequently signal the eventual onset of Parkinson’s Disease. NB: There is a significant advantage to recognizing PD as early as possible. Studies have found that the earlier a person intervenes in their case of PD with exercise and appropriate treatment, the more gentle the progression of the disease will be.

The Parkinson’s Disease Foundation lists some of the non-motor symptoms on their Website, including the following that can crop up anytime, but not necessarily in every patient with Parkinson’s Disease.

• Sleep disturbances
• Constipation
• Bladder problems (urgency-Must go NOW!)
• Sexual problems erectile dysfunctions
• Excessive saliva (Drooling)
• Weight loss or gain
• Vision and dental problems
• Fatigue and loss of energy
• Depression
• Apathy (not the same as depression.) Apathy a general sense that you haven’t the energy to initiate anything, can’t be bothered.
• Fear and anxiety
• Skin problems
• Cognitive issues, such as memory difficulties, diminished executive function,
( Executive function helps you:
Manage time
Pay attention
Switch focus
Plan and organize
Remember details
Avoid saying or doing the wrong thing
Do things based on your experience) 
executive function deterioration likely linked to the consecutive involvement of other brain regions, such as prefrontal cortex (Owen 2004), hippocampus (Bruck et al. 2004), and amygdala (Ray and Strafella 2012). These data are also supported by preclinical results showing that, in experimental parkinsonian models, the animals are impaired in behavioral tasks mainly mediated by brain areas other than the striatum, such as the hippocampus or the prefrontal cortex, as reported above.

• slowed thinking, confusion and in some cases, dementia
• Medication side effects, such as impulsive behaviors

In addition, I would consider the following as non-motor symptoms as well
• “Parkinson’s smell” a Scottish woman  ascribes a “musky” odor to PD, and was quite accurate when tested on her ability to distinguish garments that had been worn by people who had PD from garments worn by people without Parkinson’s Disease.
• Hallucinations

Much of this seems pretty serious, but it wasn’t until recently that non-motor symptoms were recognized as consequential or given much weight in treatment. The good news is that there are effective therapies for many of these problems.

The following overview is not exhaustive of possible treatments, Rather, it represents what one guy was able to turn up in a hasty afternoon of searching. You should consult your doctor before pursuing changes in treatment.

in 2010 American Academy of Neurology March 15, 2010  issued new guidelines outlining what it says are the most effective treatments for non-motor symptoms common in people with Parkinson’s disease. These include sleep disturbances, fatigue, constipation, and sexual problems, which the AAN says are often unrecognized symptoms.
The guidelines say that:
Erectile dysfunction, can be treated with the drug sildenafil citrate (better known as Viagra).
Constipation can be improved by the drug isosmotic macrogol. (Movicol) ( I should note that before adding more medications to your current list it’s worth trying a high-fiber diet, plenty of water, and/or prunes and/or prune juice. - Peter)
Excessive daytime sleepiness can often be treated with modafinil, (Provigil) which helps people feel more awake. (Or coffee, and green tea, both have caffeine and are loaded with anti-oxidants and other helpful substances, and if I remember right, consumption of both are correlated with a lower incidence of PD in populations this has been studied in -Peter)
Fatigue may be eased by taking the drug methylphenidate.(Ritalin)
Orthostatic Hypotension, According to the Parkinson's Disease Foundation may be treated by the following:

If you can recognize your symptoms and are aware of what makes them worse, you can take steps to reduce and avoid them.

Most important is to avoid dehydration, especially during the months of hot weather.  Ask your doctor to identify the medications you are taking that may lower your blood pressure, and see if a change in dose is indicated.  Avoid abrupt changes in position.

Be aware of behaviors and circumstances that can make orthostatic hypotension worse.
These include the following:
  • dehydration
  • exposure to heat
  • fever
  • prolonged standing
  • vigorous exercise
  • drinking alcohol
  • certain times of day (especially early morning)
  • straining while going to the bathroom
  • changing the position of the body (e.g., standing up)
  • meals high in carbohydrates

So that leaves the following symptoms from our list:
Sleep Disturbances: Some sleep problems can be helped by administering melatonin or clonazepam. I noticed that interruptions of sleep, particularly those associated with the need to urinate decreased greatly after I underwent Deep Brain Stimulation surgery.
Bladder dysfunction: There are various drugs to treat different facets of this problem. Consult your doctor, is my advice. Again, I noticed a substantial improvement in my struggles with this after Deep Brain Stimulation surgery
Excessive saliva (Drooling) treatment: Botox can treat this, or try gum chewing. If you can chew gum and drool at the same time, you’re multi-tasking!
Weight loss or gain: According to the Parkinson’s Disease Foundation, People with PD often lose weight prior to the diagnosis of PD, for a variety of reasons such as loss of smell and taste.  The weight loss usually levels off once people are on appropriate PD medications.  For this reason, ongoing, unexplained weight loss in PD should never be attributed to PD until more serious medical issues such as cancer and depression have been excluded.  If swallowing is contributing to the problem, a speech language pathologist can do a swallowing assessment, especially in advanced Parkinson’s.
For weight gain Parkinson Canada has this advice: “Stringent diets may decrease your energy.  Try to stabilize your weight by eating nutritious meals, controlling portions and being as active as possible. Consult a nutritionist or dietitian to help plan a healthy, gradual weight loss program. Compulsive eating (binge eating) may be a side effect of Parkinson medications. If you are experiencing this behavior, tell your neurologist/doctor.  Often medication can be adjusted which can reduce or control the behavior.”

Vision: The PDF says be aware of how medications affect vision - medications containing levodopa (Sinemet, for example) can improve movement-related symptoms as well as contrast sensitivity while other drugs may exacerbate hallucinations
Have a thorough eye examination
Get two pairs of glasses – one for distance and one for reading – may be better than bifocals, or your ophthalmologist may prescribe prism glasses
Apply warm moist compresses or ointments for eyelid irritation
Use artificial tears to moisten dry eyes
Dental problems Perhaps the simplest intervention is an electric toothbrush, which provides the fine and repetitive motions that protect teeth most effectively.

Depression treatment: Anti-depressants can be effective. Lexapro works for me. Exercise may help with depression.
Apathy: There are no medications proven specifically to help apathy. Overcoming apathy starts with being in the best possible health, and ruling out other causes for feeling sluggish. With your doctor evaluate and optimize your PD medications — better movement may reduce apathy.
Get tested for both depression and apathy — standard rating scales can help you and your doctor find the cause of your mood. If you have depression, get treatment.
Discuss ways to get the most restful sleep possible — sleep difficulties are common with PD, and contribute to fatigue.
Discuss other treatment options — although, as noted above, there are no approved medications to treat apathy, some patients may benefit from cholinesterase inhibitors (rivastigmine, etc.), stimulants, or certain types of antidepressants.

Fear and anxiety: The Veterans Administration says Treatment of Anxiety in PD is the use of Selective serotonin reuptake inhibitors (SSRI) Effective for all types of anxiety including obsessive compulsive disorder Considered first line by most VA physicians May take several weeks to work Start at low dose and increase slowly.

Skin problems: A good summary of skin problems and treatments here.

Cognitive problems: This is a huge topic, so for our purposes its best to refer you here, or here.

Medication Side Effects, such as compulsive behavior: Consult your doctor, reduce or discontinue use.

"Parkinson's smell": So far we know of only one person in the world who can smell PD, and she lives in Perth, Scotland. So let's just not worry about this.

Hallucinations in PD are not well understood. Usually the first thing tried is a reduction in dopamine-precursors (levedopa) or dopamine agonists. But I have read of recent studies that found PD patients who hallucinated without being on medication.

Tuesday, January 5, 2016

Parkinson's events in Anchorage for January

I hesitate to urge my balance-impaired compatriots out on the world's largest ice rink, but you may decide for yourselves between risking a fall and risking cabin fever. Here to help you with that choice are the things that might tempt you to go out.
The Telehealth presentation for January will be broadcast on Monday, January 11 at 1:00 pm on the campus of Providence Hospital. To find the Alaska meeting proceed with all deliberate speed to Providence Hospital oncology wing on Piper St. ( Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right.) The speakers for this interactive broadcast will be Jessica Yaeger and team, Gentiva Home and Hospice Health Representative, Topics: Hospice.
Myths discussed and questions answered.For more information contact : Parkinson’s Resource Center of Spokane at 509-443-3361 or by email at center@spokaneparkinsons.org  By the way, many of the past teleconferences are archived and you can watch them here http://www.spokaneparkinsons.org/telehealth-video-library/

Our regular support group meeting will be Saturday, January 16th, our topic will be the non-motor symptoms of Parkinson's Disease.
Best wishes to all of you for 2016!

Parkinson's, Luck, and Imagination

Here is still another of the monthly posts written for the Northwest Parkinson's Disease Foundation. Visit their website for an astonishing amount of terrific Parkinson's Disease info.

Illustration 1.5.15

I was diagnosed at 43 years old with Parkinson’s Disease. Bad luck, right? I suppose.  I hadn’t done anything conscious to court the disease, and had none apparent in my family history. It was just a miserable turn of the cards. If not luck, what is it that determines who suffers from PD and who doesn’t? What other explanation could there be?

Some people insist it is part of God’s wonderful plan for our lives, all will be understood bye and bye. It’s God’s will that I have a progressively incapacitating and incurable disease? It’s God’s will that I become stooped and drool, my ability to think impaired, my voice inaudible, my movement slow, my muscles cramped and pained? For this the omnipotent and beneficent God has singled me out? For this he has chosen me, for reasons beyond my poor power to comprehend, to be one in a hundred who suffers from Parkinson’s Disease? I honestly don’t get it.

I prefer the bad luck theory. At least, like a mafia killing, it’s not personal.

This leaves us back where we started. There are many ways luck can be sliced and spun. You can try to make a person feel better about their fate by pointing out the mitigating factors. At least you’re “lucky” it’s not one of the Parkinson‘s Plus disorders, with their rapid and devastating disease courses. At least it’s not a brain tumor, a swift and deadly killer. At least we have levodopa, exercise, and surgery to help with symptoms. That is, for a while. And for the ones who have the means to access to these modern wonders. Cheer up! In the big picture, you have lots of little breaks of good luck to soften the hammer blows of the bad.

This is less than comforting. If it’s merely luck, it can and will turn. There is no reason to believe your relative bits of good luck will hold, or for that matter that your bad luck will last. Maybe you will develop cancer, maybe an imaginative scientist will come up with a Parkinson’s cure. But it doesn’t depend on how nice you are, nor how immaculate your life has been. It’s how the dice fall.

Who wants to depend on such a fickle force? Surely there is something else.

Maybe it’s not much, but we do have each other. Human history and civilization is distinguished by the ability we have to blunt the edges of a dangerous, random Universe. We can and do make the journey through life safer, more interesting and enjoyable. Or, yes, we can make it more dangerous and difficult. Because we have the power to imagine the world as different, we have the ability to change it. 

This power seems unique to the human species, at least on Earth. We learn to set the broken leg, to weave blankets for the cold, to coax and improve crops from the earth, to celebrate the joy of life through art. Or we wire the bomb, brew the poison, plot the kidnapping, do the things that make life a more tenuous, precarious struggle. Which of these you do with your time here is yours to choose.
But you do have a debt. If you are reading this, your struggle with Parkinson’s has certainly already been made easier by those who put their imagination and effort into lessening this disease’s destructive power. Caregivers, researchers, fund-raisers, doctors, organizers, volunteers, and experimental subjects have all contributed. It’s what humans do at our best, what makes us unique. Lucky us.