June Meeting this Week – Hope to See You There

Last Meeting until September.  Come join up for an actual support group meeting where the Guest Speaker is YOU!  Well, ALL OF US!  Bring your news and bring your questions. Also, we want to hear problems and possibilities with the portal.  Peggy, the guru, will try to answer questions.  Bring your device if you want.  I don’t know how good the wifi is there but we can try.

And please bring your calendar. If any of the summer activities are to happen, we need to set dates and get reservations as needed.

Don’t forget the Farmers Market on-site at 3pm.



Our New Addition

Just in time to mark the beginning of our 4th  year of existence, our group has added to its membership benefits.

Last week, we sent out word of a private forum on line where members can talk to members and hear others opinions, as well as share news, talk about research  or even share a laugh.  There were of course, some stumbles in the  beginning but  we’ve got over half of the members either on or ready to join.

If you are a member of  WWPD and have not received your individual invitation to join the forum, send an email to us and we’ll check records (chances are we have an old email address or something similar).


Aging Well with Parkinson’s – Doctor’s Notes

Dr. Sughrue has very generously provided us with her own notes from our May meeting.  I transcribed but its possible to hear wrong or state incorrectly what is presented.  People with PD don’t always multi-task  very well.  So I encourage you, if anything sounds odd or contrary to what’s been told to you before, I strongly encourage you to double check with the Doctor’s Notes, reprinted below.


The Doctor’s Notes

We’re here to talk about normal aging which, for better or for worse, affects all of us eventually.  I think everyone here is touched in some way by Parkinson’s.  I won’t spend a lot of time on PD but we will talk a little about what PD brings over time, how it can be confused with age-related issues that have nothing to do with PD or maybe add on to some normal aging phenomenon.

PD has the motor stuff, of course, which is how most patients are first identified.  Then there are the non-motor symptoms that occur in many patients to a varying extent.  These can include constipation, low blood pressure, sweating, sexual dysfunction, sleep problems, psychiatric issues, fatigue, pain, problems with the sense of smell among others.  But wait?  There is nothing on that list that might not also be on a list for just aging except maybe the low blood pressure. Maybe you are more susceptible but all those things are symptoms I hear about in my pts without PD.

Your challenge seems to be figuring out what is coming from PD and what isn’t, what might be a side effect of one of your medications.  And what, if anything, you can do about it. For example, if you start a new medication and develop constipation, that’s seems like a clear correlation. There are longer-term side effects from your meds that might not be as obvious. For guidance on that you’re probably talking to your neurologist as well as your PCP, both will have helpful but different insights.

Aging well is a challenge for everyone but a bit more so for those with a chronic condition that can affect so many aspects of your life.  As a result a plan for maintaining good health is even more imperative for you than for someone without PD.
What do I mean by a plan for health?  This is the advice you probably give and have heard from doctors and lay people alike but it’s absolutely vital. I’ll just review the 5 components briefly.
Plan your food.  Most of it should be fruits and vegetables with a smattering of red meat if you eat it.  Better protein sources are legumes, fish and chicken.  Stay away from fast food, junk food, sodas (even diet) and make your portions reasonable.
Regular exercise, 30 minutes 5 days a week.  Interval training can be VERY short, like 2 minutes on and 2 minutes off repeated 4 times and you’re done.  Add in some attention to your balance and strength, again not a big time investment, and you will help reduce wear and tear as well as prevent falls going forward.
Sleep schedule should be as good as you can make it.
Stress reduction in any way possible.  Meditation or just breathing exercises are wonderful ways to avoid using medications in this setting.
Stay engaged like doing things like this!  All the evidence suggests that isolated individuals are at much higher risk for illness in general and memory or psychiatric ones in particular.

All that said I’ll just go through a few of the most common age-related complaints I hear.

Menopause:  Some of us sail through this, others really struggle.  In my years in medicine the pendulum has swung at least twice to the extremes of hormones for everyone, no hormones, supplements, no supplements.  At this point the buzz words are “window of opportunity.”  That means that there is a window of time basically from the onset of menopause (average age 51) and extending about 5-10 years when hormones might do more good than harm.  For every patient who feels she needs help, it is worth a special visit with your doctor to review the pros and cons for you taking into account your meds and other PD issues.  Symptoms of menopause include hot flashes, mental fogginess, sexual issues, insomnia, abnormal bleeding.  Some of those definitely overlap with PD so would require some sorting out.

Cataracts:  This has nothing to do with PD.  The lenses of our eyes can get cloudy with age.  Genetics accounts for about 35% of your risk and environmental factors 65%, i.e. Related to diet, smoking, lots of alcohol, sunlight exposure, poor lifestyle habits (like inactivity or poor nutrition), use of steroids and maybe statins which are used for cholesterol.  A word about steroids:  The occasional use for an acute asthma flare up or the like is not the issue.  Long term oral steroids or maybe even high-dose inhaled steroids like Flonase can be a problem.  The dietary pluses are best gained by eating the foods, not taking supplements which is pretty much true of all diet-related advantages.  So lots of Vitamin C is the big one for preventing cataracts, i.e. Fruits and vegetables – where have you heard that before?

Osteoporosis:  PD does not cause low bone density but you may be at higher risk due to the inactivity you might suffer because of motor issues.  It’s important because you might be at higher risk to fall.  The risk factors for osteoporosis overlap a lot with those for cataracts:  Smoking, inactivity, steroid use, high caffeine and/or alcohol use, thin, Caucasian.  Genetics also play a role.  The current guidelines don’t recommend a bone density test in the average woman until age 65.  Again it’s something to discuss with your doctor and do what you can with your risk factors.  Vitamin D is one supplement that it’s hard to get enough of given where we live and avoiding the sun as we do.  So a daily supplement of 800-1000 IU is recommended along with 1200-1500 mg daily of calcium.  The latter can be derived entirely from food or 1/2 and 1/2, it is worth looking at your diet and seeing what you might need to add in.

Before we move on to memory issues, I’d like to introduce something that’s had a few names during my years in medicine: Syndrome X was the first name, a little scary. Now we call it Metabolic Syndrome. This refers to a combination of medical conditions that conspire against our arteries in bad ways. Those conditions include HTN, DM, high cholesterol and overweight. The last problem, being overweight especially when combined with inactivity, is thought to be the main culprit in the changes that ensue leading to what we call small vessel disease and deposition of plaque in our brains, disrupting normal function. Memory problems are very much increased when you have 1, 2, 3 and 4 of those conditions and PD adds on to that. Please work with your PCP if you suffer from any of those conditions to minimize them as best you can. And it’s not just memory issues that result from metabolic syndrome, of course, there’s the usual heart disease, kidney disease, stroke among others.

Memory issues:  These occur to almost everyone with aging but there is no doubt PD confers a slightly higher risk.  Again it’s all the same stuff that helps prevent it that I started with – sleep, exercise, food, stress reduction and avoiding social isolation.  Managing your other medical conditions is key as I mentioned before. The kind of memory issues that normal aging causes can be disturbing but have no particular implications.

Energy levels:  Again it’s hard to sort out PD-related issues vs. aging.  There are often many contributing factors – chronic pain, chronic medical conditions, medications, stress, changing bodies, poor sleep.  Trying to identify what factors you can modify and those you can’t can help.

Arthritis/Pain:  This can be related to genetics plus wear-and-tear.  And that wear-and-tear can be specific to an abused joint, like a runner’s knees, or just generalized like in a person who does physical labor all his/her life and ends up with lots of joint-related issues.  Prevention is difficult when genetics are involved.  But minimizing its effects can really make a difference.  This is best accomplished by maintaining a healthy weight and staying physically active.  Many studies tell us that the more time those of us with arthritis spend being sedentary, the more likely we are to have increasing disability and we are more likely to develop other chronic health conditions.  And only 10% of us meet the current guidelines in terms of exercise recommendations.  So ANY increase in activity is good and that often means finding an activity that can accommodate the pain and disability.  Medications:  Nothing great unfortunately.  The NSAID’s and Tylenol are mainstays for pain.  There are many supplements out there, theories about antioxidants, etc.  Nothing really has been substantiated in placebo trials.  So try to keep it simple and stay active.

I have not talked about health maintenance items that crop up as we enter our 50’s and 60’s and on but would be happy to discuss recommendations about things like screening for breast, cervical and colon cancer since a lot has changed in the last 10 years for all of those. We could also talk about recommended immunizations and other screening blood tests if you want.

That’s it!


Aging Well With Parkinson’s Disease


Well, we aren’t getting any younger, let’s face it. And thanks to new research on Parkinson’s Disease, we’re living longer with new pharmaceuticals and an increased understanding of what happens to a person who has this disease. But now that we’re living longer, what can we expect from the aging process? How will we know what is normal aging and what is PD related?

To help us learn about what lies ahead, we asked Maura Sughrue, MD, a family practice doctor recently named one of Washingtonian Magazine’s “Top Docs” for 2016. She graciously sat down with us and discussed aging and PD.

Just to know how confusing this can be, the same non-motor symptoms of PD can also come with aging, (can include constipation, sweating, sexual dysfunction sleep problems, psychiatric issues, fatigue and pain). One exception relates to blood pressure. , With PD you can have low blood pressure. but BP usually goes higher as you get older. You’ve heard the expression that “aging is not for sissies”. For most people, aging is a challenge but its even more so if you also have a chronic disease.
Dr. Sughrue recognizes our challenge of trying to discern what is coming from our PD and what isn’t, and what might be a side effect of medication. For guidance, she recommends you talk with both your neurologist and your PCP; both will have helpful and different insights.

To age well, here are some basic recommendations for staying healthy as you age.

Planning Your Food. Concentrate on fruits and vegetables and limit the amount of red meat you consume. Avoid fast food and processed food. When you eat, watch your portion sizes. The dietary pluses are best gained by by eating the foods instead of taking supplements. Good advice at any age.
Regular Exercise. Strive for 30 minutes a day, five days a week. Pay attention to balance and strength along with aerobic activity.
Sleep. Sleep can be elusive as we age. Strive for the best quality and best quantity you can. Tell your doctor if you can’t.
Stress and anxiety actually affect your health. Find ways to deal with it, either by something like yoga or reducing exposure.
Stay ENGAGED! We’re all better off when connected with others.[ When my mother was in a nursing home, she’d get depressed sometimes. But when she had tasks for her church or a goal that involved her being and working with others, she was much happier and energetic.]

Topics on Aging

Some people slide right through menopause and others really struggle with it. Symptoms of menopause include hot flashes, mental fogginess, sexual issues, insomnia and abnormal bleeding.The thinking on taking hormones after menopause has shifted back and forth. But the 2001 Women’s Global Initiative (a comprehensive long-term study of the health of 100,000 women from the 1980’s) said that no one should take them. Other thinking is that there’s a place for hormone therapy and everyone could benefit for their use. Now there’s more of a middle ground on the usage; there are some situations where a woman could benefit from hormones for a certain time.

When you have cataracts, you have cloudy lenses. It could be a result of genetic, environmental (sun exposure ) or diet.

Oral Steroids
Oral steroids, like one might take for asthma doesn’t cause cancer. It is the long-term steroid usage at a high dosage that is problematic.

What can I do to prevent problems as I age?
Dr. Sughrue says one of the best things to do is up your Vitamin C level, not by taking supplements but by eating it, so up the citrus in your grocery trip.

Parkinson’s Disease does not affect your bone density. Rather, it is less activity which leads to decreased bone density. Doctors strongly encourage Vitamin D3 supplements to help strengthen them. Seniors absorb the sun at 20% of the rate of 20 year olds. Also, if you’ve been a smoker and you are inactive, you have a higher chance of getting osteoporosis. There are websites that have a calculator to show your risk. One the doctor mentioned was the FRAX calculator (FRAX stands for Fracture Risk Assessment Tool.

Metabolic Syndrome
Metabolic Syndrome refers to a combination of medical conditions that conspire against our arteries in negative ways. If you have any of the following, you should work with your PCP to minimize and control them.
High cholesterol numbers
Memory Loss
Are you worried about possible memory loss? How can you tell whether it’s a regular part of aging or if its something more? You should bring your concerns to your doctor but if you’re bothered by it, if you’re aware enough to realize you forgot something, you probably have nothing to worry about. It’s when you aren’t aware of gaps in your memory that there’s more likely to be a problem. For memory loss prevention, the recommendations are the same as stated with other issues, sleep, exercise, food, stress reduction and avoiding social isolation.

Lack of Energy
A lack of energy as you age could have a lot of contributing factors. It could be due to a one or a combination of the following:
* Chronic pain
* Poor sleep habits
* Changing body
*  High stress load.
It’s important to try to identify the critical factors to get quality sleep. This includes ruling out apnea, for example.

Osteoarthritis can be due to genetics but could also be a result of wear and tear on your joints, whether you’re athletic or not. You can minimize the impact by maintaining a healthy weight and staying physically active. Usually treated with pain-killers but that has concerns too, as far as what they can do to your kidneys. Dr. Sughrue
recommends trying to stay as physically active as possible. Movement is important.

The best frequency for having a mammogram has been debated and changed over time. Currently, the advice is to have one every other year. Doctors take an oath to first do no harm, but too many mammograms creates a risk , too,considering how much radiation you’re exposed to. Mammograms can also give false positives leading to more biopsies than really necessary. That’s not to say that someone with a family history, genetic testing or prior history have to follow the recommended schedule.

Pap Smears
Pap Smears are not as accurate for detecting cancer as HPV (Human Papiloma Virus) testing. Where there’s no HPV, there’s no cancer so the focus is on identifying HPV. If your HPV test and your pap smear is clean, you’re probably good for 5 years.

Shingles and other Vaccines
The disease known as shingles occurs when the virus that causes chickenpox is reactivated in the body. The virus, once contracted, stays in the body, dormant until the person’s immunity begins to decline as they age. The result of the reactivated virus is the painful rash known as shingles. The shingles vaccine is generally approved for those who are 60 and over.
Here’s a fact about vaccines that I didn’t know: they are less effective as you get older. So why bother? One important reason is “herd immunity”. If you are in a large group of people who, say, have all had chicken pox and someone walks in with a full-blown active case, it won’t spread through the “herd” . ( I’m assuming no pregnant women, no one with compromised immune systems.) But if that same person walks in to a community where only a percentage have had the disease, some people may contract it and spread it.

What’s with all the Hepatitis C commercials aimed at baby boomers?
Hepatitis C was spread along with all the “free love” of the 1960’s. A test was available but insurance wouldn’t cover it. Most insurances still won’t but if you’re concerned, you can ask them about coverage before asking talking to your doctor.

Other Suggestions
A low dose chest scan would be good for former smokers.
Oh, and a one-time HIV test could be a good idea.
Colon cancer screening. You can have a colonoscopy or a stool test, Some prefer the colonoscopy. If you’re clean, you only have to repeat in 10 years. The stool test is annual.
Encourage your doctors to converse, especially if they disagree about your treatment. It’s much easier now that there are shared digital patient records and email.
It’s important to keep your GP updated. This is a long-term investment. In case of an emergency, its good to have your doctor know you well. It’s recommended to see your GP every year or two.
One way to keep the GP updated is by asking your other doctors to send a copy of your visit notes.


Healthy Aging and PD…and a poem

Ode on Growing Older

My body’s aching and I can’t ignore
That I’m more comfortable sleeping on the floor

Could you speak up? You’re hard to hear.
I’m sure there’s nothing wrong with either ear.

I have to use the bathroom a hundred times or more
As soon as I leave the bathroom,I’m running back through the door.

All these issues could be part of my PD
But can also be due to the new Older Me.

Our May meeting will shine some light
On when the “why’ matters and what we can do to fight.


Ideas for topics and speakers come to me in various ways.  Our marvelous members are a rich source of both.  Member ideas have brought us meditation, qigong, nutrition, physical therapists, speech therapists and more.    Sometimes, the topic  or speaker offers itself such as a major break in research or a neurologist willing to take on the group.  And sometimes, they just come from real life, what is happening in our lives.   This is one of those.

When first diagnosed, I kept hearing about about all the motor and non-motor effects.  So many problems attributable to PD or it’s treatments.  Books had sketches of the body with every organ affected by PD named.  Lately, though, many of the medical team’s comments start with, “When you get to a certain age”  or “as we get older”.

So our May speaker is Maura Sughrue, M.D, a Family Practitioner at Fairfax Family Practice. She has served as Chairperson of the Department of Family Practice at Inova Fairfax Hospital since 1990.  She is a strong advocate for her patients, which might be another good topic to ask her about.  Her primary topic, however , is normal aging.  We all know there’s no cookie cutter pattern to aging but it will be interesting to hear about age ranges , say, for cataracts or menopause.  What is normal memory loss?  What’s this bladder issue I’m having about?  What can we do to be our best selves as long as possible?  When is something just an ache and when should you see a doctor?  There are so many angles and she’s willing to do Q&A – bring your questions

Date :  Wednesday, May 3

Time:  1 -2:30 pm

Location:  St. John Neumann Church  

11900 Lawyer’s Road

Reston, VA  20191 

April Meeting Today

 Just a reminder of our meeting on April 5,  please join us for our guest speaker,Trisha Stotler, of Insight Life Services.  Check her out on the web at http://www.insightlifeservices.com .She will be talking about meditation, one of the complementary  methods of treating our symptoms. Studies have also shown that  meditation can help prevent or delay dementia ,especially  when practiced with yoga, too.
April Meeting- – LUNCH!
There was interest expressed last month for lunch this time.After speaking with a few members, I  decided  to offer up a pot-luck lunch instead of a restaurant.  It allows for more socializing and easily accommodates special dietary preferences.  I ask for the following:
  • 4 or 5 main dishes- salads or sandwich platters
  • a few  sides  (chips, fruit, etc)
  • Napkins, plates
  • Waters
  • Plastic silverware
  • A couple simple desserts
If you’re bringing food, try to arrive around  noon so we can set up.  Every one else can arrive closer to 12:15.If we don’t need you to bring food this time, you can help clean up in time for our meeting to start.
Future  Speakers
2017  looks to be an exciting year for speakers  and we have each of you to thank. Doctors and others tell me that that they hear lots of positive comments about our group. That make them want to play a part along with therapists and other experts.  Lined up and committed so far include:
  • Maura Seghrue, MD (May)
  • June is speaker -free  purposely  as the fial meeting before summer break.
  • Randy Stephenson, MD
  • Joy McLaughlin, PT
  • Other possible speakers include Susan Wranik- MS, MA, CCC-SLP  (Great speaker at the Symposium).
See you next week! 

February Meeting Reminder

Our February meeting is next Wednesday.

This is one of those meetings that give truth to our group name – support group. Rather than have a speaker  come , we share our experiences and knowledge with each other in mutual support .

What is the subject this month?

When its group only, I usually pick a starter topic.If it doesn’t appeal,  I have faith  that the subject will turn on its own.  So this month the topic will be

To prepare, ponder these questions:
Have you experienced anxiety?
What situations seem to trigger your anxiety?
How do you deal with it?
Do you have tips to share?
See you Wednesday!

ALSO, check out this from the Michael J. Fox Foundation:  Michael J. Fox Foundation