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.
Welcometo all with an interest in Parkinson's Disease. This blog was to be an information clearinghouse for the Anchorage Parkinson's Disease Support Group, where meeting schedules, agendas, speakers etc could be found. It's still that, but has also become a sort of therapeutic hobby. So I invite you to join in the discussion and experience a little therapy as well. This will be as interesting as we as a community make it. Think loud and sound off!
Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.
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The Knight Digital Media Center, judges of the Alaska Press Club's annual journalism awards selected The Alaska Parkinson's Rag for second place in the "Best Blog" category for 2008. Here is an excerpt of their comments:
"...Alaska Parkinson's Rag is many things: a community resource, a humor column, a science and medicine explainer. But it's also something that few blogs ever manage to be: addictive and gripping. Everything seems to work just right on this blog, and it is a powerful testament to what a person can achieve in this medium. "