Some Things Are Better Left Unsaid

Parkinson's Journey

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Posted: 21 Mar 2014 05:09 PM PDT I've heard it. I've said it. I've thought it. I've regretted it. We've all said things we wish we could take back. But sometimes we've said things not even realizing the impact it had on another person. In the wrong way. As children we would see someone 'different' than us and it caught our attention. Promptly mom or dad (or both) would quietly say, “Quit staring!” So we'd quit staring because it wasn't polite. As adults, we tend to forget our manners and while children can tend to stare out of curiosity and innocence, adults do it in a different way out of ignorance and misplaced well meaning. Wen you have a chronic illness or disability with symptoms that others are able to see, you are naturally the recipient of stares and comments, questions and interest. Most people will graciously answer the questions presented to them. It doesn't mean it wasn't rude. So, if you know someone with Parkinson's or see someone who you think has it (don't assume they do), here are some suggestions of things ;/ to say. “Why are you shaking? Do I really make you that nervous?” My granddaughter asked me not too long ago why I shake. This is perfectly acceptable. But so did a neighbor I barely knew. And then she (my neighbor) added the question, “Do I really make you that nervous?” Sorry neighbor. You don't hold that much power over me. This stupid disease does. “You don't look sick. You don't look like you have Parkinson's.” So, I ask – what is a person with Parkinson's disease supposed to look like? “I heard you have Parkinson's disease.” Now, which trustworthy relationship just became untrustworthy. We all have stories to tell. The thing is – they are our stories. To share another person's personal health matters with someone else is tacky, to say the least. Unless you have been given permission by the person with the disease to tell all your friends, don't. Some people have inferiority complexes and will feel now everyone knows and they are the talk of the town. “I heard there's no cure.” Uh, right. Thanks for pointing that out. When I was in high school, I wore one of my favorite dresses to church. The pastor's son, visiting from college asked me, “Are you pregnant?” I had never even had a boyfriend. A date. I never forgot it. Some things cannot be undone. Don't ask someone if they have Parkinson's because if you don't already know the answer, you don't need to know. “It's all in your head.” Yes, I know a husband really said this to his wife. (Not mine.) And, he's right. It's all in her head. It's a brain disease, which is in the head. But, IT'S NOT ALL IN HER HEAD. Who in the world would want to pretend they have Parkinson's disease? I'd rather pretend to be Sandra Bullock. “I wish I was on Social Security so I could sit at home all day.” Wow. Yes. Every time I think of this being said to me, I get a little wound up. Where do I start with this one? Let's see, my SS check doesn't even cover our housing each month. It's not “Social Security” it's disability. There's a big difference. And do you know all the hoops you have to jump through and how many years it can take to get SSDI? And, people with Parkinson's don't sit around all day. If they did, they'd NEVER be able to move. They push themselves to stay moving and they don't sit around because life has become more precious than before, because they have Parkinson's. “Shouldn't you take it easy? Sit and read books and not do so much?” Uh, see #7 regarding pushing themselves. “You're too young to have Parkinson's disease.” When's a good age to get it then? “God never gives us more than we can handle.” Yes, He does. It's called strength and endurance training and that comment just isn't biblical (although I have been known to have said it myself). “A friend of mine had Parkinson's disease and they were cured after drinking a pomegranate and spinach mixture.” How much are you making being a spokesman for the person who's swindling you to swindle me? If there was a cure, Michael Okun told me he'd know about it. If you don't know who Michael Okun is, well – he's pretty smart. “A friend of mine died from Parkinson's disease. It was an awful thing to watch.” See response to #4. I admit, having PD for as long as I have, I've gotten used to some things and if someone were to ask me if I had PD, it wouldn't bother me. I'd probably respond in context of educating the person. Perhaps I'm too trusting. Some people, however, don't want to discuss it with just anyone and some are just getting used to the idea of having to live with this new little monster known as Parkinson's disease. So, with that said, well… Some things are better left unsaid.

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CHANGES IN THE BRAIN STRUCTURE AND VOLUME DETECTED WITH A UNIQUE MEMORY TEST

 

 

Changes in the Brain Structure and Volume Detected with a Unique Memory Test

Researchers at Turku University Hospital in Turku, Finland used a specific test of memory and a high powered MRI to measure changes in the gray matter of subjects with PARKINSON’S DISEASE.  Their results are reported in the January 16th edition of Journal of Parkinson’s Disease.

In this study, they used 28 subjects who were within 3 years of diagnosis with PARKINSON’S DISEASE but whose daily lives were not in any way affected by cognitive or memory issues and 28 healthy, non-Parkinsonian control subjects.

Previous research has been able to show loss of brain volume related to memory loss in PARKINSON’S DISEASE, but has not been able to compare brain volume and memory problems to specific structures. Part of the problem may lie in the types of tests administered and the Magnetic Resonance Imaging (MRI) data collected.  This study used a more precise, advanced form of MRI, called voxel-based morphometry (VBM) that is able to measure three dimensionally the volume of selected brain regions.  Together with a unique memory test, they were surprised to find slight morphological changes showing degeneration of the parietal lobe, but only on the right side.

The memory test they used was an incidental free recall test where subjects were shown a list of 30 to 60 words and images but specifically not given any instruction about remembering them.  Later they were asked to recall as many of them as they could.  The incidental recall test simulates more closely actual real life memory situations, where there is no intention to commit events to memory but where they are remembered freely.  Attention is not focused on remembering and no cues are given to assist the memory formation in real life.

In this test, the researchers found there was significant impairment in the PARKINSON’S DISEASE group in both recall and visuospatial control tasks, but that word list learning and executive control tasks were unaffected.  While the overall gray matter volume of both groups showed no significant difference, the memory tasks did show smaller volume of gray matter in the right parietal cortex of the PARKINSON’S group, but not in the control group.  The researchers suggest that this particular brain region is affected because it is involved in attention to memory and visual images and not to the semantic nature of the task.

Dr. Ulla Ellfolk from the Department of Psychology and Logopedics of Abo Akademi University and the Division of Clinical Neurosciences at Turku University Hospital.  Dr. Ellfolk stated “This study is one of the first to link a discrete area of the brain to a cognitive deficit in people at an early stage of PARKINSON’S DISEASE.  Clinical studies have shown that free recall is more strongly affected than language, performance on simple attention tasks and visuospatial functioning in newly diagnosed PD patients.”

Brain Volumetric Correlates of Memory in Early Parkinson’s Disease; a Research Report; Ulla Ellfolk, Juho Jouts, Juha O. Rinneb, Riitta Parkkola, Pekka Jokinen, Mira Karrascha; Journal of Parkinson’s Disease 3 (2013) 593–601, IOS Press; DOI 10.3233/JPD-130276

Review by Marcia McCall

Picture Credits

Leave the Brain Out of It: Spinal Stimulation Could Offer an Alternative to Treat Parkinson’s Motor Symptoms

FoxFeed Blog

Posted by  Maggie McGuire, March 10, 2014

Image of spinal cord and nervous system courtesy of NIH

Deep brain stimulation
is a game changer for
many Parkinson’s disease
(PD) patients. This therapy
can alleviate motor 
symptoms and improve 
quality of life, 
but it does require 
brain surgery and is not
 a possibility for all 
people with PD.

A group of researchers
from Duke University
and the Edmond and 
Lily Safra Institute of Neuroscience of Natal in Brazil is working toward the same 
end result without the need for such an invasive procedure. These investigators 
made a splash earlier this year when they published in Scientific Reports 
that spinal cord stimulation in pre-clinical models improved motor symptoms
and showed neuronal protection.

The Michael J. Fox Foundation (MJFF) did not fund that study, but we have
funded research from this same group of investigators to test spinal
stimulation in a more advanced model. The MJFF-supported study is
not testing the neuroprotective effect.

“This is an exciting time for, what we call, neuromodulation,” says Maurizio
Facheris, MD, MSc, associate director of research programs at MJFF.  
While deep brain stimulation has helped many people living with Parkinson’s
disease, there are limitations to its use. Spinal stimulation could extend this
therapeutic approach to many more.”

For deep brain stimulation (DBS), a surgeon implants a thin electrode into the
brain, targeting motor circuits that are not functioning properly. Small electrical
pulses from a device similar to a cardiac pacemaker block the signals that
cause some Parkinson's motor symptoms. Spinal stimulation uses the same
technique, but rather than blocking the signals where they begin, the therapy
blocks them further downstream. The electrodes are implanted in the dura, the 
outermost of three layers that surround the spinal cord.

Spinal cord stimulation is already used to treat chronic pain. Researchers
are fine-tuning the application to work on the neurons that misfire to create
Parkinson’s motor symptoms. If successful, this procedure would be an alternative 
for patients who may not be able to have DBS because of vascular problems,
mood disorders or aversion to brain surgery.

Through another grant, MJFF is supporting researchers from the University
of California, San Francisco to develop a method to record brain activity
during DBS so the stimulation can take place only when needed instead
 of continuously. The same enhancements could be used in spinal stimulation.