Monday, September 27, 2010

Hoof and Mouth: Scientists Find Talking While Walking Can Lead to Falls for People With Parkinson's Disease

Well it looks like mum's the word for PD patients who are in the act of walking. According to scientists at Florida State University those of us of the Parkie persuasion are increasing our risk of falls if we jaw while jogging. No word if screaming while you fall also amounts to the kind of multi-tasking we should avoid. But if you ask me, I say, scream. What have you got to lose?

On considering this latest bit of information it hit me that there are vast implications in the Things for Parkinsonians to Avoid Doing Department. Just to be helpful, I have compiled a handy list of additional potentially hazardous forms of multi-tasking for we Parkies to avoid. NB: many of these have yet to be studied by researchers, but I am rushing to publication with them anyway. NB2: This is NOT an exhaustive list, and you should not conclude that just because it's not listed that a particular form of multi-tasking is in any way safe or endorsed by this blog. When in doubt, assume the fetal position and refuse to move. Wait, that would be multi-tasking. When in doubt, just assume the fetal position. Call me sloppy, but for heaven's sake, not while you are walking.

List of Multi-Tasking No-Nos

Rubbing BBQ sauce in your hair while sticking your head in the mouth of a lion or other large predator

Yelling "FIRE" while in a crowded theater (unless, of course, the theater is on fire)

Greeting your friend John with a hearty "Hi, Jack!" while standing in a TSA line

Petting a porcupine while chewing gum

Tugging on Superman's cape while spitting into the wind

Pulling the mask off that old Lone Ranger while messing around with Jim

Drinking and unicycling

Operating heavy machinery while sleeping

Murmuring your girlfriend's name while making love to your spouse

Murmuring your spouse's name while making love to your girlfriend

Kicking sand in the face of a bully while being a 98-pound weakling

Yelling "FREE BIRD!!!" while attending the symphony

Acting as your own attorney while having a fool for a client

Repeating "Hide me, The monkeys are in the control booth!" while undergoing a psychiatric evaluation.

French-kissing an ostrich while either sober or inebriated (either of you)

Laughing maniacally during confession

As I mentioned above, this is not an exhaustive list. If you notice any egregious omissions, please post a reply with your multitasking no-no. If you have a complaint, just give me a call when you're out walking.

Thursday, September 23, 2010

October in Parkinson's: What's Brewing

The daylight hours are growing shorter. Ok, you didn't need me to tell you that. But maybe you'll prick up your ears at this: The Northwest Parkinson's Foundation will favor us with another interactive Telehealth presentation that may be viewed live in room 2401 at Providence Hospital's new cancer wing. The date will be October 11th, the time 1:00pm. The topic will be Addictions, Compulsions and Prioritization with Parkinson's. For more info, call 1-877-980-7500. For a wrap-up of the last Telehealth confererence, look here.

For our October 16th meeting, I plan to give a sneak preview of the speech I have been invited to give at the Hope Conference in Seattle this November. I was asked to provide a patient's point of view and I came up with a multi-media presentation called "Homemade Hope". I'll be looking for your feedback to make this as successful a presentation as possible. Again, the date is October 16, 3:30 in the afternoon at the Pioneer home.



Tuesday, September 14, 2010

Teleheath Conference: That's Entertainment!

A band of die-hard Parkinson's information fanatics were treated to a display of fact-packed, well-thought out answers to questions from around the Northwest fielded by Spokane doctor David Greely. The Q&A was the centerpiece at yesterday's telehealth symposium. The symposium is a monthly interactive broadcast hosted in Anchorage by Providence Hospital. The supporting cast, in the form of small gatherings of attendees from Moses Lake to far-flung Anchorage asked thoughtful questions, and provided a certain amount of sympathetic comic relief as we watched one another struggle with technology using our PD-impaired bodies. (Extra points for the drama provided by the solitary elderly lady who spent several minutes under the table on camera out there somewhere. It was a relief to all of us when you reappeared in your seat and returned to noisily scratching your pencil on what I sure hope was paper.)

While a few questions may have vanished into the haze of the technological Bermuda Triangle, some significant points emerged that were well worth the time and effort of attending. Among the most compelling for me:

Muscle Cramps:
can be treated by proper hydration, metabolic balance and addressing sleep problems, Which is, duh, the way you would treat them in a patient without PD. Sometimes we're not so special.

Eating and Pills:
According to Dr. Greely, nine out of ten people with Parkinson's do not find any difficulty with this. For those that do, he still recommends taking your meds with a small bit of cracker or other non-meat to cue your digestive process to go into action. A pill is not usually enough in itself (unless you are taking some mighty big pills, Chester) to prompt the stomach to empty and push your medicine down the line to your intestines where it can be absorbed into your blood.

Stem Cells: Two thoughts here, relief from this direction is years down the road if it is to come at all, and the problem in the technology is not installing the cells, it's regulating them so that they produce the proper amount of dopamine in the brain. Dr. Greely likened it to the famous "Sorcerer's Apprentice" scene from the Disney Movie Fantasia. First you have one broom, then two, then four, then eight, then chaos.

Exercise I see you rolling your eyes out there. At least that's one part of you that's moving. I know that I harp on this subject ad nauseum. But Dr. Greely made a new point that rang true for me the second he said it. If you exercise, you will get better care from your doctor, from your caregiver and anyone else in your network of care, because you will send the message that you are trying. It doesn't have to be dramatic, start with what you can do and work up. But show those who work to keep you going that you are willing to do your part. They'll love you all the more for it.

Monday, September 13, 2010

As if you were not already busy enough...

OK Parkie Pals, limber up those fingers to mark the following dates on your calendars: TODAY the 13th, 1:00 Telehealth Seminar interactive info session on PD at Providence hospital second floor of the new cancer wing.

Sept 18,Saturday at our regular meeting at the Pioneer Home at 3:30 we will have a presentation on Deep Brain Stimulation (DBS) for Parkinson's Disease from Swedish Hospital in Seattle. Peggy Short, Advanced Nurse Practitioner and DBS programmer will be our main guest. This meeting will also be attended by Keely Daily of Medtronic, the makers of the deep brain stimulator. Unfortunately Dr. Ron Young, a DBS surgeon had to cancel his participation.

Remember our DBS motto, "You need PD like you need a hole in your head." I'll see you there.

Oh, one more thing, I festinated across an excellent blog for those of you who have the exalted, or exhausted, status of PD caregiver. The blog is "Slow and Easy" you can find it here

Must run now, or at least shuffle,


Thursday, September 9, 2010

The Parkinson's Parade

Congratulations! You’ve got Parkinson’s Disease! Yes! You’ve hit the disease jackpot! The bells are ringing, the lights are flashing the crowd is hysterical because Parkinson’s is no mere disease, it’s a whole cream-center assortment of ailments packed into one! It’s a disease-a-ganza, a smorgasdisorder, a never-ending buffet of indignities, inconveniences and setbacks large and small.

Parkinson’s is no simple sickness. Instead it is a malady made up of a host of disorders that normally would be considered diseases themselves. But in Parkinson’s, they are mere symptoms, a part of the larger picture.

What do I mean by a “host” of disorders? I'll just run through a number of them off the top of my head. For starters, you look as though you are taking this stoically and with an Olympian calm. But that’s because you have lost the ability to use your facial muscles to express your inner feelings.

The inability to use your facial muscles this way, when it occurs on its own, can be a disease called “Moebius Syndrome”. It is rare, but it is no less a disease for that. One effect of this disorder is to cause its victims to lose their ability to express emotions subtle or dramatic. To have a frozen face is to present an eerily blank slate to the world. A world that often concludes that you are unreadable because you are up to no good, and treats you accordingly.

That should be plenty for any disease, but Parkinson’s is an overachiever. Parkinson's is just getting started!

So to frozen face, let’s add dystonia. Dystonia is the involuntary flexing or cramping of a muscle. Not only can this be painful, it can result in a person a enduring twisted hands or other body parts held at bizarre angles. Nasty enough, but only one marcher in the PD Parade.

Marching right behind dystonia, we have depression. Like PD, Depression can exhibit itself in many ways: the blues, lethargy, and slowness of movement are some. And on they come, Parkinson's sufferers are hosts to many more combinations of what could stand on their own as full-blown diseases. There's urgent bladder, tremor, cognitive impairment, sexual dysfunction, even loss of the sense of smell.

There is some good news here. Many of these problems can be alleviated for many years with proper medication and careful management of exercise and diet, But this industrious disease refuses to quit there! On top of all the first level effects, there exists a second tier of disease-like complications that set in over time from the medications. For instance?

Well, how about dyskinesia? That's the dance-like uncontrolled movements made as the brain becomes less able to handle the levels of medication in your system. Suddenly, you're moving too much instead of not at all. This does have its benefit on the exercise front. I lost at least ten pounds while undergoing endless bouts of unwanted movement. But it complicates anything requiring an accurate hand abominably, and you move in a spastic ballet that looks like Joe Cocker dancing Martha Graham.

But PD isn't all physical torture. Drug side effects can also involve mental disturbance. Because PD medication is involved with dopamine, which regulates feelings of reward as well as movement, the introduction of dopamine-like drugs can lead to compulsive addictions to things like gambling or sex.

Many, but not all these disorders can be held at bay with brain surgery. That's the good news. The bad? Many of these disorders can be held at bay, but it takes brain surgery.

This is by no means an exhaustive list, though it is an exhausting one. Oh, which reminds me, one more Parkinson's complication that is a disease in itself. Narcolepsy- the sudden dropping off into deep sleep, a surprise nap attack that strikes all at once without warning. But then again, with all those diseases on board, is it any wonder a person needs a little shut-eye?