Sunday, June 20, 2010

On the Job Training for People with Parkinson's Disease

Parkinson's is like having a job you never clock out of. It's a combination of clerk, (what pill am I on now? When do I need to order more?) researcher, (what can I learn about this new symptom, that proposed medication, this new technique, that new facility?) dietitian, pharmacist and any number of other specialties that crop up as you make your way on the PD journey. The hours are long, the pay is laughable, and don't get me started on the health plan.

Unfortunately, the reasonable response of "Sorry, I'm not qualified to have Parkinson's Disease" will not deter this ambitious disorder from selecting you for the position. This means that we have to grab every opportunity for learning. Here are highlights from several recent sessions of "on the job training" that I was able to take advantage of.

The first was a web conference for people who blog about Parkinson's Disease that offered us a chance to ask questions of an academic neurologist. The presentation was somewhat marred by the discussion of about PD basics that were familiar territory for those of us attending. The presentation only came alive for me at one point. The doctor was asked about falling and his reply was offered with a note of urgency that gave it impact. His answer was that once you start falling, there is not much that you can do to improve your balance. His advice? A newly diagnosed patient should take up Yoga or some other balancing discipline as soon as possible so as to be so, as he put it "overcompensated" in their balance skills that the disease will have much farther to go to erode this ability to the danger point. This was the first time I have ever heard of overcompensation used as strategy outside of Wall Street wage practices. If overcompensation is good enough for them, it's good enough for us!

Next up were a pair of presentations held in Wasilla, made possible by the Washington Chapter of the American Parkinson's Disease Association. A shout out to them, especially Evie, for going to the trouble of coming all this way and bringing such excellent speakers.

The first to talk was Doctor of Pharmacology Steve Setter. During a presentation enlivened by humor, Dr Setter left us with a number of excellent thoughts for managing medications. Among the tips:

Know your pharmacist
The complexity of the Parkinson's family of disorders along with other problems you may have, for example abnormal blood pressure or heart problems means that you need someone on your team who is looking at what all your doctors are doing with all your medications. Where this is not possible, for instance when you must mail order your meds, it behooves you to study the reams of boring info in tiny type that comes with the pills. See "researcher" above.

Know the shape, color and size of your medications
if something looks different, ask. Pharmacists do make mistakes sometimes.

With or without food? Efficacy of drugs and the ability to tolerate them are often pegged to this issue.

Always take pills with fluids make sure that pill goes where it can be readily absorbed instead of lodging in your throat.

Know the optimal timing of your doses here Dr. Setter offered an interesting tidbit: If you know that you are going to be stuck in a car or airplane and you don't want to be dyskinetic the whole time alter the timing of your dosage to allow for that.

Over the counter medications can have interactions with prescription medications. An example cited was Tylenol pm, which contains benedryl, this, when crossed with PD medications that make one sleepy can add up to an exaggerated snoozing effect.

Dr. Setter offered the National Parkinson's Foundation's drug handbook (Download it here) as an especially helpful resource.

One final point that Dr. Setter made was that we need to be careful about giving advice to other people with Parkinson's based on our experience. Because every case of PD is different, and because PD meds act differently in different people at different stages one person's experience may not be comparable to another person's.

Dr. Setter was followed by Dr. Kris Rhoades, a neuropsychologist practicing at Virginia Mason Hospital in Seattle. Dr Rhoades spoke on cognition, depression and sexual dysfunction in Parkinson's Disease. As usual this hard-working disease is doing its darndest to undermine us in multiple ways. In the area of cognition Parkinson's affects the frontal lobe of the brain, impairing what doctors call "executive function" and what you and I call multi-tasking, planning, speaking the ability to retrieve memories and the ability to adapt. With its habitual irony PD attacks the very areas we need to use in order to cope successfully with it.

So how do we work against this? Some Alzheimer's medications help, along with our old friend exercise and the practice of exposing oneself to new ideas and situations, fostering flexibility in our brains. Personally, trying to do all of the exercise and brain stimulating I can and hoping it takes a long time to catch up with me.

Dr. Rhoades then moved on to depression. We know it is common in Parkinson's disease, and that the lack of dopamine, which is one of the main feel-good chemicals in our brains is a major hallmark of Parkinson's Disease. So the nature of our disorder makes us easy targets for depression. Depression in Parkinson's is often characterized by slowness, impaired concentration, weight loss, sleep disruption, diminished appetite and decreased sexual desire. In my experience it is also marked particularly in men with denial. I asked Dr. Rhoades if he could suggest any strategies to break through to a depressed person and get them to deal with it. His Zen koan-like answer: "How many neuropsychologists does it take to change a light bulb? Only one, but the light bulb has to want to change".

On dealing with depression, Dr. Rhoades said that anti-depressants give us a window to deal with the problem, implying they are a temporary solution to the problem. Beyond advocating exercise, which my reading and personal experience confirm help quite a bit, I don't recall much that he offered to go beyond them. And if the depression is the result of some chemical imbalance triggered by our disease, why not continue to use them as more than a stop-gap?? Dr Rhoades, if you are reading this, I welcome comment.

From depression and dementia, it was on to sexual dysfunction. Dr. Rhoades took on some myths and barriers to understanding and coping with this problem. Among the myths: Older adults do not want sex, older adult sex will be dysfunctional, and that older adults cannot be treated for this problem. Not necessarily so, says Dr. Rhoades.

He went on to outline some special areas of difficulty for PD patients: Movement impairment, changed appearance, masked face, sleep disturbance, fatigue, and change in roles in the partnership involved. He also listed differences between the sexes when it comes to sex and PD. Men still become aroused, but then have erectile failure. Women are less easily aroused. Spot the PD irony here? Every muscle in your body becomes stiff except the one you want to become stiff. Parkinson's, you crazy jokester you!

What to do? Vow of celibacy, anyone? Me neither. That leaves us with the fall-backs we are all at least dimly aware of. For men, those pills which everybody is spamming you about constantly (talk to your doctor.) Oral estrogen, creams, lubricants and additional stimulation and foreplay for women. Above all Dr. Rhoades advocates talking with your partner. Communication you may have gone without in the past is now imperative. A good reason to consider speech therapy!

Dr. Rhoades asked that we recognize pragmatics, that we acknowledge emotional stress, consider demonstrating love in non-sexual ways and talk frankly and openly about sex with our partner.

That's all from this edition of on the job training here at Parkinson's University (P.U)
Let's conclude with the P.U. Anthem:

For Parkinson's we won't sit still,
Though long the climb and steep the hill
Until we've popped our final pill,
P.U. we'll keep learning.
Depressed and slow, dysfunctional too
Still we raise our glass to you
We'll kindle hope and rise anew.
And keep the home fires burning.

Is there a dry eye in the house?

Wednesday, June 9, 2010

Face Value

A reader just passed on this fascinating New York Times story that deals with the tremendous amount of non-verbal communication that people transmit with subtle facial cues. Cues that we people with Parkinson's Disease are often unaware we no longer send. (You can find an earlier piece that I wrote on this subject here)

This is a valuable reminder that if we do not understand and somehow compensate for the meanings and nuances that we do not transmit because of our frozen faces, we are likely to encounter more than misunderstanding, we may be dismissed as dull, or perceived as angry. Which of course we may be, but who wants to start with that as the default setting for their face?

The article discusses several strategies that people use to get around the problem of the paralyzed face. Unfortunately some of these, such as the exquisitely pitched voice, or the well-tempered laugh, are difficult for those of us with Parkinson's to execute. It's important to be aware of this and work out compensating strategies. I've found it useful, even necessary at times to explain my poker face. People may assume that if you appear to be hiding your emotions, there is some deep and nefarious reason for it, and it puts them on their guard.

How important is a facial expression? So important that it can be read across species lines by our pets. Dogs are great students of humanity (cats don't give a rat's tail) and can learn to mimic a "social smile" I know this because my old dog, the legendary Sadie, learned to do it. We came home one day from work and, in addition to the customary leaping and tail-wagging, we were greeted by a slight curling of her lips. "We've got a grinner dog! Pam exclaimed, and from then on whenever she would start with one of her peculiar little grins we would smile back with all the wattage we could muster, until she mastered a wide grin that, if you didn't read the rest of her body language, bore an alarming semblance to a snarl.

How do I know that this was a "Social smile"? I saw her use it as one, just as a human would. This was years ago on a ski trip that took two days. On the morning of our second day we emerged from our chilly sleeping bags and set about cooking a hot breakfast. I don't remember exactly what we fixed, but to a cold and hungry dog it must have smelled of heaven.

My friend Peter loaded his plate up, then set it down to fetch something. Sadie crept quietly up from behind and was about to devour his breakfast when Peter turned around and caught her, unleashing a fusillade of angry words. Sadie retreated about ten feet, then turned around and gave him the biggest "Who me?" apology grin of her career. It was a brilliant deployment of a facial cue, and it worked, getting her off the hook.

A hook that impales me frequently now that I must concentrate and remember to smile. It's easier when I remember even a dog will do it.