Wednesday, February 3, 2016

February and Parkinson's in Southcentral Alaska

Hello Friends, it's time once again to take keyboard in hand and dish the PD scoop for the month. To lead with good news, it's NO LONGER JANUARY!
I think we can all agree that's a good thing. See? we're making progress! So what's in store for February?  Well, as usual there will be a Telehealth interactive broadcast on February 8th 2016 at 1PM (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 speaker will be Sabina Gonder CHC Topics: Sleep Health and Hygiene. Learn why getting enough sleep is so important to your overall health, and steps to get more sleep every night.

Our regular support group meeting is set for February 20th. I will have to miss the  meeting because I will be in South America, (really!) but there is no reason that everyone else should not show up, talk with one another, offer each other support and, most important, plot the coup that ousts me as leader while I'm not there to cheer it on. 
Adios, Amigos!

Pedro

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?

Constipation?

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.

Wednesday, December 23, 2015

Blog Throw down: Will Off & On The Alaska Parkinson's Rag Be Recognized as One of the Best Health Blogs, period? It's up to You.

UPDATE I have removed the voting mechanism from  this post for reasons outlined in the comments below.

The organization Healthline has decided that this very blog is eligible to be named  one of the tippy-top health blogs on the World Wide Web in 2015. They will determine the winners through a vote of you, the faithful that flock here for, well,  whatever it is you flock for. You can vote once a day until the contest closes, so vote early and vote often by clicking on the badge below. Thank you! 

Sunday, December 13, 2015

Just in the St. Nick of Time, It's the Anchorage Parkinson's Calendar!

I know you are busy, so I'll be brief.

Telehealth next MONDAY DEC, 14 at 1:00. Subject will be Acupuncture, what it is, what it does. 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.
December support group meeting will be held Saturday December 19th, at 3:30. It's extra-cold and dark outside, so that must mean it's time for our annual holiday potluck. I will bring something main-dishesque, and plastic forks, spoons and other implements of destruction. You bring whatever you like that is tasty to share (not that any of us can taste anything, buy can't we pretend?)
Those of you that ordered books will be able to pick them up at the potluck!
Until then,
Pete, out

Saturday, December 12, 2015

My Degeneration" Featured in Thoughtful Alaska News Dispatch Article by Mike Dunham (Cross post from Frozen Grin)

A perceptive and thoughtful article from Mike Dunham appeared in the Alaska News Dispatch on "My Degeneration" putting it into the larger context of the Graphic Medicine genre. The article yielded the following "... the book presents much of the trauma in the garb of absurd humor. Dunlap-Shohl devotes several panels to recounting how nervous or insensitive doctors broke bad news to patients. Some of their manners were so crude that they seem drawn from the sad, wicked comedy of Vonnegut or Balzac." To which I can only say "Thank you". 

(Worries to self about raising expectations sky-high, then remembers, Mike likely the only living person in Western Hemisphere to have read any Balzac.)

Wednesday, December 2, 2015

Book Launch for "My Degeneration" Tonight!

One night only! Laughter, tears, tremors, ogres, true love, software, life's bitter realities and moments of transcendence, all in one laff-riot, tear-fest, a wrenching roar of the imagination, a cold, hard look at reality, the "My Degeneration" book launch at blue.hollomon gallery is tonight! 6:00 to 8:00at the Olympic center, a Zamarello mall near you, 36th and Arctic Boulevard to be exact. And yes, I will personalize your copy working boldly, without spell-check. Please come, see you there!

Saturday, November 28, 2015

Review Round-Up, What Critcs say about "My Degeneration" (Updated 1/)

Here is a brief collection of snippets from the reviews that I have seen so far of my new memoir, "My Degeneration"

In a piece that appeared in The Alaska Dispatch News Sunday magazine,
Nancy Lord, former Writer Laureate of Alaska called "My Degeneration "an astounding work in the form of a graphic narrative that documents — in a formidable blend of intellect, emotion and humor — the experience of living with Parkinson’s."

Mike Dunham, veteran arts reporter for of The Alaska Dispatch News set the tone early, writing "Informative, poignant, funny and deeply engrossing, the 96-page full-color book is the most entertaining volume by an Alaskan author to cross my desk in some time."

"Publisher's Weekly"weighed in soon after with this: "Editorial cartoonist Dunlap-Shohl (formerly of Anchorage Daily News) takes a frank look at his battle to live with the specter of Parkinson's disease in this emotionally resonant memoir"

Next, in a surprise move, Science called it "a model of how to fill a particular niche" in a double review with another book from Penn State's "Graphic Medicine" series, Aneurin Wright's "Things to Do in a Retirement Home Trailer Park When You're Twenty nine and Unemployed."

Reviewers on Amazon have been exceedingly kind. Out of 14 reviews so far, all (even the one from my cousin Jon) have awarded "My  Degeneration" five out of five stars. Comments from Amazon reviewers include :

***** "It must become one of the first things a physician gives a newly diagnosed patient to read. It's that good."

***** "This book blew me away."

***** "It is devastating yet fascinating. A must read."

***** "This is a beautiful book"

***** "I will keep this book in my office and read it and re-read it as well as recommend it to everyone I know."

***** "It is impossible to over-praise this book's importance in placing this despicable disease in context and/or for it's clarity of explanatory information


***** "I think we would have to go back to Oliver Sacks' "Awakenings" to find an investigation of PD with similar investigative prowess and narrative power."    

Friday, November 20, 2015

Fine-Tune Your Meds and Dosages With This Handy Chart

First, this CYA notice: please confer with your doctor before adjusting your meds. You'll be glad you did.

Most of us (but by no means all) adapt well to levedopa or other medications  in the earlier stages after diagnosis. Then as time passes we find that we must fine-tune our timing to avoid motor fluctuations (off and on periods, dyskinesia, etc.) Graphing our dosages and timing is a good way to keep track. So I have drawn up a chart to make things easier. You're welcome. There is a pdf of the blank chart here for your downloading pleasure. When you download and print the chart, it should look like this
Here is how to use it. Starting with the bottom line fill in and number all your medications, not just your PD meds. Your chart will look something close to the one below...
























If you need more space to add medications, I suggest putting them in above the existing blanks I have provided. Note that I have added the strength of each medication as well as the medication's name to make it easier for your doctor to interpret results when you confer with them (See CYA notice above.) Once you have the medication blanks filled in, you are ready to get graphing! But you'll be best off if you start with your morning cycle, so if it's not time for the first dose of the day, you should start tomorrow. I have found that to keep my meds straight it works best for to start my medication cycle at the same time each day. This eliminates one variable, and the fewer the variables, the easier it is to see what is happening. A pill timer is a big help, or set up a schedule of dosage alarms on your smart phone's clock app. Let's say your cycle starts every day at 7:00 am.  Your first entry will look  something like the chart below...

List your meds by number as you take them throughout the day. As the day goes by, also track your motor state ranging up and down from "off", (difficulty in moving and lots of tremor) through acceptable, (Approximating normal life) up to excessive motion with uncontrolled dyskinesia. Whenever you notice your state changing, note it down with a fever line on the graph. (The wavy line shown here in gray) By the end of the day, it will look something like this...

In the In the above example the person takes medications 1,2,3, and 4 first thing in the morning,and then every two hours, takes medication one.

Below is another example of how the chart may look

 So what is going on? That's for you and your doctor to figure out (see CYA notice at the top of this post.) But just for grins, let's look at these last two charts above again. In the next-to-last chart we find the patient spends much of the day with too much unwanted motion suggesting the levedopa (Stalevo, in this case) dosage could be spaced out in time more, In the last chart, we see rather frequent periods whered the patient seems undermedicated, suggesting a boost in dosage frequency or strength

A final thought or two. First, Don't rely on just one day of data. Lots of things can interfere with getting good results, tiredness, what you ate and when, exercise, and my favorite, getting so caught up in graphing that you forget to take your stupid pill. Try for a couple of weeks. Some clear  patterns should emerge. 

Second, the medications and their effects are not perfect, Even with the wonderful ability of the brain to gauge and compensate for error and imperfections in our tools and protocols for handling the problems that arise the state of the art is not equal to the job of restoring perfection. We can only approximate normal for a percentage of the day. This depends on variables like disease progression and severity, If you are faithful about keeping track of your doses and responses, this should be a helpful tool for you and your doctor in fine-tuning your medication regime to get the best results possible, in this best of all possible worlds. (See CYA notice at the top of the post)