Shake, Rattle and Roll

How Prevalent Is Suicide in Parkinson's Disease?

The dramatic headline “Suicide is Five Times More Likely in Parkinson’s Disease” caught my attention. It made it seem as though everyone with Parkinson’s Disease (PD) was either thinking about suicide, attempting suicide or committing suicide.

I was skeptical and asked Benzi Kluger, MD, neurologist and specialist in the non-motor symptoms of PD, at the University of Colorado at Denver.

Dr. Kluger’s comments about the study (at the bottom of this post) are as follows:

1) This is a relatively small study. There were just over 100 patients followed for 8 years and only 2 suicides. With such a small sample the chance of error is high. One more or less suicide would have totally changed their results.

2) Suicidal ideation (thoughts) seem to be higher in PD, which is not surprising because depression is also more frequent.

3) Suicide is a cultural phenomena and higher in Serbia, where this study was done, than in the US.

4) Some studies suggest suicide may be at increased risk after DBS, but again these studies are small.

5) There is probably some increased risk for suicide with PD, but larger studies are needed in this country to reliably estimate this risk. Physicians, patients and care givers should be aware of this risk and take it seriously.

1: J Neurol Sci. 2009 Sep 7. [Epub ahead of print]

Suicide and suicidal ideation in Parkinson's disease

Kostiæ VS, Pekmezoviæ T, Tomiæ A, Jeèmenica-Lukiæ M, Stojkoviæ T, Spica V, Svetel M, Stefanova E, Petroviæ I, Džoljic E.

Institute of Neurology CCS, School of Medicine, Belgrade, Serbia.

Little is known about the prevalence and correlates of suicidal behavior in Parkinson's disease (PD). In the first part of the study, we followed a cohort of 102 consecutive PD patients for 8 years and found that the suicide-specific mortality was 5.3 (95% CI 2.1-12.7) times higher than expected. In the second part, we tested 128 PD patients for death and suicidal ideation and administered an extensive neurological, neuropsychological and psychiatric battery. Current death and/or suicidal ideation was registered in 22.7%. On univariate logistic regression analysis, psychiatric symptoms (depression, but also anxiety and hopelessness), but not the PD-related variables, were associated with such ideation. On multivariate logistic regression analysis this association held for major depression (odds ratio=4.6; 95% CI 2.2-9.4; p<0.001), psychosis (odds ratio=19.2; 95% CI 1.4-27.3; p=0.026), and increasing score of the Beck Hopelessness Scale (odds ratio=1.2; 95% CI 1.0-1.4; p=0.008). In conclusion, the suicide risk in PD may not be as high as it is expected, but it is certainly not trivial. According to our data almost a quarter of PD patients had death and/or suicidal ideation, that may significantly influence their quality of life.

PMID: 19737673 [PubMed - as supplied by publisher]

Parkinson's Disease's Deficits

It's 3:02 in the morning in Colorado. It's NOT a normal waking time for me. However, most of my friends around the world with Parkinson's Disease (PD) have fragmented sleep patterns and wake up in the middle of the night or too early in the morning. But the lack of sleep in PD patients is a story for another time.

There are too many deficits or "lacks of" with PD starting with the "lack of dopamine." In the middle of the night, I am stewing about my "lack of voice and speech." It happened again yesterday: the "lack of communication" when I was talking to a Deep Brain Stimulation (DBS) patient and his family at the hospital. I secretly admired the family member who had the guts to ask me: “How did DBS affect your voice and speech?” I knew he was worried about his father sounding like me after DBS.

My voice and speech have been impacted negatively by PD and worsened by DBS.

The organization DBS-STN conducted an interesting survey, "Speech in individuals with PD with and without DBS" at:  http://www.dbs-stn.org/UserFiles/File/SpeechIn%20Ind_PD_rev_.pdf

The survey indicated the following:

“It is common for individuals with PD to experience monotonous and reduced pitch and loudness, variable rate of speech, short rushes of speech, imprecise consonants, and a breathy and harsh voice.”

and

“Some research has found that speech intelligibility (clarity in expressive speech) worsened following DBS, and speech sounded more slurred. DBS has also been found to have an adverse impact on intonation or rhythm, articulation, and intelligibility; the stimulation itself can cause changes in speech."

My voice and speech sometimes suffer from further “lacks”:

Lack of strength

Lack of volume

Lack of clarity

Lack of warmth

Lack of vitality

Lack of articulation

Lack of variety

Lack of speed

Lack of being heard

Lack of being understood

which result in my:

Lack of self-esteem

Lack of confidence

Lack of contact with people

Lack of feeling normal

I often feel like One Big Lack!

Occasionally my voice and speech seem almost like my pre-PD self. This is the reason that I refuse to delete my 10-year-old voice mail greeting which demonstrates my potential for a warm and clear voice.

At my last DBS programming session, my neutologist/programmer and speech therapist claimed that my voice sounded "perfectly fine," that the goal is understandable speech, and they can understand me (my interpretation was "So what's the problem?").

When 600 people were chatting in the lobby after the Rockyettes dance performance on June 11, my speech therapist commented that she heard every word I said above the roar of the crowd. It is ironic that I am satisfied with my dance performance but dissatisfied with my speech performance in a situation that requires no speaking.

I don’t know if the professionals are accustomed to such poor speech and voice in their PD patients, that my speech and voice sounds “perfectly fine” to them. But the medical folks are not there to witness the frustrated phone calls or the anger in the faces of the audiences when they can’t hear or understand what I’m saying.

It is similar to the experience that most of us have had when taking our car in for repair only to discover that our car works “perfectly fine” when the car mechanic is present.

During the past years, I’ve tried the following measures to improve my speech and voice. You'll notice that I'm no slacker. 

Thyroplasty

• Before I was diagnosed with PD thirteen years ago, I went to an ear-nose-and throat physician because of my “lack of voice volume.” During the evaluation process, he discovered that my vocal cords didn't come together when I spoke. The only population he had seen this was in stroke patients. It was obvious that I did not have a stroke, but he never considered the possibility of PD. He suggested having a surgical procedure called a thyroplasty to correct vocal cord weakness. Patients with vocal cord weakness have a weak, breathy and hoarse quality to their voice and speaking requires considerable effort.

Traditional speech therapy

Lee Silverman Voice Treatment (LSVT) and post LSVT exercises including “Think Loud” at: http://www.lsvtglobal.com/

Voice Aerobics at: http://www.voiceaerobicsdvd.com/

Toastmasters International at: http://www.toastmasters.org/

DBS programming adjustments

The BREATHER­ – this device strengthens and acts like resistance training for respiratory muscles. Information about the BREATHER can be found at the following websites: www.blaismedical.com  www.pnmedical.com  www.beterairways.com

Blowing up balloons – to strengthen lung capacity

Facial steamer

Humid climate or humidifier

Singing in the shower and car

White noise machine – to talk louder than machine to increase my voice volume

Metronome –to pick up the tempo of my voice

I have found that LSVT, Voice Aerobics, the BREATHER, and humid weather sometimes make my voice and speech almost seem normal.

Perhaps this is as good as it gets with PD and DBS. Perhaps I’m greedy and want it all – to talk and dance simultaneously–imagine that! Perhaps I need to lower my expectations and learn to live with it. However, despite my deficits with PD, I’m not ready to give it up and will keep on talking and dancing for as long as possible.

Parkinson's Disease Is No Picnic

I’ll never see Parkinson’s Disease as a gift, blessing, or journey.

Parkinson’s is NO PICNIC.     

Parkinson’s is not a friend of mine. Although I’ve met many wonderful people through having Parkinson’s, I would have preferred meeting these folks under different circumstances such as a cocktail party, not a support group.

I’ll never write a book called The Joy of Parkinson’s. I don’t believe that there will be a cure for Parkinson’s in my life time. I’m doomed to be a pessimist.

I think optimism is highly overrated. I’ve tried to convert myself into an optimist, but deep down, I’m really a glass-half-empty kind of gal. According to social psychologist, Roy Baumeister, optimists are more divorced from reality than pessimists. They have high opinions of themselves and show exaggerated beliefs in their ability to control what happens around them. They think their future will be far better than the average person's. On the other hand, pessimists display fewer self-enhancing illusions and are more realistic.

Being a pessimist, I worry about peculiar things such as when the time comes, will I be able to afford living in an assisted living facility or nursing home in the style that I’ve grown accustomed. I fret about when and how I’ll die from Parkinson’s. Will I fall, choke, or develop aspiration pneumonia? Will someone try to prolong my life when its quality is no longer there?

Someone recently accused me of being a DBS (Deep Brain Stimulation) Cheerleader, although I’ve never seen myself as a rah-rah kind of girl. I invariably expect things to turn out worse than they do. After having Parkinson’s for 13 years, I was sure that I’d be dead by now. At any moment, I expect that God will drop by, tap me on the shoulder and say, “Sorry, little missy, but your time is up.” It’s that Irish Catholic anxiety syndrome that makes me expect the worst and go through life being fretful.

However, there is an upside to not having a naturally sunny disposition. Being the kind of person who fears the worst, I have often been pleasantly surprised.

You optimists out there, please surprise me. Find the cure for Parkinson’s in my life time and turn Parkinson's into a picnic.

.

Apathy as a Virtue

Jean from Columbia, Missouri responded to What Difference Does It Make: Apathy and Parkinson’s with the following:

“Darn!!!  I thought that I was becoming a better person, mellower and less confrontational.  I thought that I had finally developed the good sense to know which battles to fight and which to just let slide.  But now I learn from your website that what I thought was a VIRTUE is really just a SYMPTOM--apathy.

Drat, phooey, and rats!  I think that I'll just ignore the diagnosis and keep believing that Parkinson’s has given me a new perspective and greater tolerance.  I think that I'll keep apathy in the VIRTUE column.  I kind of like the new, more tolerant, me.”

***

I can be just as virtuous as the next gal. But I am less tolerant than Jean and still struggle with picking and choosing my battles. Perhaps a little dose of apathy might be the antidote for my Parkinson’s woes.

What Difference Does It Make: Apathy and Parkinson's

I am happy to report that apathy is NOT one of the Parkinson’s Disease (PD) symptoms that has hit me, at least for now (but one never knows if apathy might be lurking around the corner). In fact, I may have the opposite problem of caring too much, but that’s another story.

Features of Apathy

Hubert H. Fernandez, MD from the National Parkinson Foundation’s Center of Excellence at the University of Florida in Gainesville, discussed apathy at the Colorado Neurological Institute’s program on January 24, 2009.

Apathy is defined as a dulled emotional tone associated with detachment or indifference. The apathetic patient’s typical response when asked a question such as what he wants to do or eat is “I don’t care.”

It is normal to have specific disinterests in life, such as not caring about sports, money, or politics. However, with apathy, the patient loses interest in all aspects of life, including areas of former interest. An apathetic patient is typically a couch potato.

Joseph H. Friedman, MD (a former mentor to Dr. Fernandez) in his book, Making the Connection between Brain and Behavior, states that apathy encompasses a behavioral pattern of:

• Loss of interest in events
• Reduced spontaneous interaction with people and pets
• Decreased concern or seeming indifference to friends and family
• Muted emotional tone
• Loss of interest in hobbies
• Loss of enjoyment
• Loss of distress at hearing bad news
• Loss of motivation

Apathy is Different from Depression

Dr. Friedman described some of the similarities and differences between depression and apathy.

Depressed and apathetic patients frequently share these similarities:

• Anhedonia (absence of enjoyment)
• Loss of motivation
• Lack of interest

Depressed patients often have the following symptoms while apathetic patients rarely experience these symptoms:

• Sadness
• Irritability
• Reduced effort
• Sleep disturbances
• Anxiety

It is also possible to have the dual diagnosis of depression and apathy.

How Apathy Affects Caregivers and Family

Dr. Fernandez indicated that depression tends to drive the patient crazy, whereas apathy can drive the patient’s family crazy. Apathy becomes more of a problem for the caregivers, family and friends than for the PD patient.

Apathetic patients participate less in activities that help them function. This results in a greater burden on the caregiver which requires more understanding, patience and effort. A less responsive patient provides little satisfaction for the caregiver.

How Apathy Affects the PD Patient

Both physicians agreed that the apathetic patient doesn’t care that he doesn’t care. The “I don’t care” attitude provides a protection from the grief and loss suffered by the PD patient. It might be preferable for the apathetic patient to not care versus feeling frustrated and disgusted with one’s loss of functioning. Not caring conserves energy that the apathetic patient might not have to expend.

Treatment of Apathy

Although there is treatment for depression, there is currently no treatment for apathy. Dr. Fernandez stated that research is being conducted using pet therapy to help PD patients with apathy take some interest in life. Wouldn’t it be great if dogs could break the behavioral resistance and emotional barriers of apathy and allow PD patients to express some zest for life?

Resources:

Making the Connection between Brain and Behavior by Joseph H. Friedman, MD at: http://www.joseph-friedman.com/

Hubert H. Fernandez, MD at Ask the Doctor, National Parkinson Foundation at: http://www.parkinson.org/NETCOMMUNITY/Page.aspx?pid=255&srcid=216

Sunshine after the Rain

 

“Laughter through tears is my favorite emotion.” ~Steel Magnolias

 

When I read Terri Reinhart’s story, For Crying Out Loud, I cried until I laughed.

 

I never used to be one who cried. During my pre-Parkinson’s days when I was a Certified Public Accountant, I never cried for 15 years. Of course as an accountant, I seldom laughed or expressed much of any emotion.

 

The “gift” of Parkinson’s opened up my tear ducts. Now…

 

I cry at weddings.

 

I cry at funerals.

 

I cry when I talk about having Parkinson’s Disease, and I cry when “I don’t want to talk about it.”

 

I cry when waiting for approval of my disability benefits, and I cry when the benefits are approved.

 

I cry when I do amazing things such as dance with the Rockyettes and climb the vertical ladders at Mesa Verde National Park, and I cry when I think of the future without these activities.

I cry when people are kind and cry when people are cruel.

 

Perhaps I have turned into a Cry Baby, but that’s okay because I am emotionally healthy now. Opening up the flood gates has allowed the full expression of ALL my emotions. Laugher through tears is my favorite, like sunshine after a hard rain.

 

 

Ask the Psychologist

From time to time, my blog readers ask questions beyond my area of expertise. This was the case when I recently received a question from a support group leader. I asked Carolyn Zeiger, a clinical psychologist and PWP spouse, for her response. Thank you, Carolyn, for generously sharing your expertise.

Question: In our support group, I think what we have is a PWP married to a Type-A personality male who seems (to the PWP) to be using her diagnosis to exert more control. Refusal to cooperate causes such stress it becomes counter-productive to her. She goes nowhere without him except to support group meetings. He tells her doctor, family and friends that her depression and growing lack of sense of herself is due to the PD. I think this is a long standing difficulty that the PD is exacerbating - and may be yond the support of our group. Any thoughts??

My thoughts: I have definitely seen this in other couples (PD and Alzheimer's) usually with a pre-illness domineering husband. The men I've seen are scared: PD can't be controlled! "But I have to control it! That's what I know how to do." In a new situation, when we don't know what to do, we do what we already do know how to do. Further, not being able to even acknowledge being scared (not manly), some men handle their fear by becoming ever more controlling of the PWP.

Not only does illness shape us, who we are shapes our illness--not just the person with the diagnosis. Those closely connected also are shaped by, and shape, the way the illness manifests and progresses. Just ask the renowned neurologist Oliver Sacks (Awakenings).

Sometimes there's a self-esteem issue involved, so if something is wrong with his wife, it must be due to the illness--nothing that reflects badly on him. Also, most men believe they should fix their wives problems (poor guys!) and I have seen some men make the most desperate attempts to personally fix, care for, etc. their wives, beyond what works for either one of them. Their efforts ultimately become counter-productive.

And a third motivating factor can be a fear of being emotionally abandoned, due to either disability or death. I remember a man who collapsed in sobs telling me that he couldn't imagine living without his wife--who was in her late 80's and had advanced PD. His love is very real, but this is something we all need to imagine, to prepare ourselves for, even when our spouses have no medical problems. He spent a fortune trying to cure or ameliorate the PD, and devoted his life to caring for her--to the extent that it made her feel suffocated and restricted.

Of course, these particular tendencies show up in women also, but are more common in men. We women have our signature ways of coping also. For better or worse.

In all cases, when you look closely, it is a matter of attempting to meet the needs of the caregiver, not the PWP (I need to be in control, I need to be the fixer/provider, I need this person emotionally). We all try to meet our own needs, and should, but the needs of both spouses need to be understood, considered, and the ways of meeting them negotiated. PARTNERS! Many couples do not have a history of being able to do this. They can still learn, however. PD may give them the opportunity to enrich their marriage out of necessity.

I got really carried away here...anyway...I would recommend referring the PWP to a licensed mental health professional who is experienced in working with people who have a chronic, progressive illness, better yet, experience with PD itself. The background of the therapist matters because he or she needs to be able to differentiate, for example, PD-based anxiety or depression from that which is psychological in origin. Problems that appear to be psychological can be neurological and vice versa. The therapist needs to consult with the PWP’s neurologist on occasion. The PWP needs to have what it takes to go for counseling with or without her husband's consent. If he won't drive her, find a friend who will. Perhaps, in time, husband will come too if that's what's needed.

Almost nobody with PD that I have met, or their caregiver, is in therapy. (I do know a couple that has been in therapy for years to deal with each thing as the PD progresses.) At some point, every one of us could use a little help, both PWPs and their caregiver-spouses. I found it enormously beneficial to see a grief counselor to get beyond my overwhelming sense of loss when my husband was diagnosed with PD. Therapy doesn't need to be long term. Just one session did me a world of good.

It would be good for the support group to create a list of qualified professionals, both neuropsych and grief counselors, (as I did for ours), and give it to everyone in the group to have in their "PD Survival Kit," so to speak. The list is right there if they need it, and they don't have to ask anyone, to publicly reveal their distress, to be able to get help.

Your friendly neighborhood shrink and PWP spouse,
Carolyn

Carolyn Allen Zeiger, Ph.D.
Clinical and Health Psychologist

Shining Light on the Parkinson’s Personality and DBS

Many of you have heard of the so-called Parkinson’s personality, described as a person having traits and behavior such as:

Serious and humorless

Unwilling to take risks

Rigid and inflexible

Hard working

Obsessive

Introspective

Yep, that pretty much describes me as a “normal” person living with Parkinson’s Disease. I might throw in a several more characteristics:

Type A personality

Perfectionistic

Controlling

High-driving

Intelligent and highly educated

So what happens when “normal” people with Parkinson’s personality traits (perfectionist, high-driving and risk-adverse) take the risk of having Deep Brain Stimulation (DBS) Surgery?

We want perfection.

We want immediate results.

We want to be like the persons we were before we had Parkinson’s. We’d prefer to be a little better.

We want control of the neurostimulator.

And we want it now.

Despite the propaganda seen in videos promoting DBS, most of us won’t immediately jump out of our wheelchairs and run a marathon after DBS. DBS is not like a tonsillectomy or appendectomy where you take out the tonsils or appendix and you immediately feel better. It’s a process that requires patients with patience. Only after reprogramming of my DBS system, am I willing to say that I would do it over again (thank you, Dr. Olga).

The light bulb moment came for me when I figured out and accepted that with DBS, I am exactly the same person that I was at an earlier stage of Parkinson’s. And that’s good enough for me.

Stopping the Negative Self-Chatter

I need to stop nagging myself. With Parkinson’s (PD), I have become both the nagger and naggee. It is demoralizing.

When my neurologist scrutinizes my gait, I force myself to swing my arms, unclench my hands and stand up straight.

When walking, I order myself to flex the front of my foot and let my heel strike first to avoid shuffling.

When I’m at my yoga class, I remind myself to push my shoulders blades together, straighten my back and “don’t forget to breathe”.

When I’m performing with my dance group, I tell myself to get rid of that PD frozen facial mask by smiling to the audience and pretend that I’m having the most fun of my life.

When I am driving, I reprimand myself to focus entirely on driving. I turn off the music in the car to avoid distractions.

When I speak to others, my internal chatter warns me to speak loudly and enunciate my words.

When I concentrate on making my handwriting bigger and more legible, I suddenly have nothing to say.

Why is multi-tasking so difficult?

According to Joseph H. Friedman, MD, author of Making the Connection Between Brain and Behavior: Coping with Parkinson’s Disease, people living with PD have trouble doing two things at the same time because of the loss of the “automatic pilot” mechanism due to PD. It's as if the program to the brain that previously allowed us to do many complex tasks without thinking about them, has gone on strike.

Dr. Friedman elaborated further about the PD brain which “says to blink less, swallow less, write small, talk softly, stoop the shoulders, shuffle, and while all of these problems can be overridden, they can only be overridden consciously, that is, while people are thinking about one particular problem. Unfortunately there are lots of other things to think about.”

This self-flagellation has become just too much. I need to cut myself some slack and keep on walking, talking, dancing and exercising as best as I can, for as long as I can.

The Brain-Behavior Connection in Parkinson's

Finally, someone gets it! At long last, someone is talking about the behavioral issues related to Parkinson’s Disease.

And that someone is Joseph H. Friedman, MD* in his new book Making the Connection Between Brain and Behavior: Coping with Parkinson’s Disease, released on November 28, 2007. It is refreshing that Dr. Friedman not only understands the connection between the PD brain and PD behavior but also has the ability to clearly explain this relationship.

This book, written in laymen’s language, is the only one of its kind. It focuses entirely on an area that most doctors overlook, an area that often causes the most problems and can be the most treatable.

While patients and families are usually aware of the physical challenges that accompany Parkinson’s Disease, few are prepared for the common behavioral aspects that impact their quality of life, including depression, anxiety, fatigue, apathy, dementia, paranoid delusions, compulsive behaviors, and sleep disorders. There is also a chapter on the impact of Parkinson's on patients’ driving abilities.

This book is a wonderful resource for patients, care partners and family members. It is also invaluable for healthcare professionals looking for a tool to help their patients open up about the challenges they are facing.

And who wouldn’t be touched by a doctor who dedicated his book to: “My patients, whose courage, resilience and fortitude are a never-ending source of inspiration.”

Learn more about Dr. Friedman and his valuable book on his website at: http://www.joseph-friedman.com/

* Joseph H. Friedman, MD, is the director of the Parkinson’s Disease and Movement Disorders Center of NeuroHealth; Clinical Professor of Clinical Neurosciences at the Warren Alpert School of Medicine of Brown University; and Adjunct Professor in the School of Pharmacy of the University of Rhode Island.

It's Time for Depression to Come Out of the Closet

Check out May You Never Understand, Joe's post in his blog, Day by Day Adventures of the PD Warror.

Joe took a risk and shared his personal experiences with clinnical depression. His message will break the stigma attached to depression and the stereotypes attached to depressed people.

According to statistics, 40-50% of people with Parkinson's suffer from depression. I’ve been fortunate that I don’t suffer from depression, although in the past I’ve had periods of low level depression, sadness and anxiety. However, many of my friends with Parkinson’s Disease have suffered a great deal due to clinical depression.

Thank you, Joe for bringing this important topic out of the closet. It took a lot of courage to do so. By taking the risk, you have educated and inspired all of us.

Unpredictable

Unpredictable arrives with no reservations reminding me that life, like food, is not always made to order.

I brag to my friends that I’ve gotten rid of Unpredictable as though she is a pesky mosquito and if I spray enough insect repellent, she will banish. The next day I wake up with an itchy red mosquito bite.

A neighbor with MS limps up the steps to our front door with her cane. She asks if my PD is in remission because I look so well. I tell her that there is no remission with PD. It is chronic and progressive. There is no cure.

I ponder the concept of remission. Wouldn’t it be great if PD would remit?

The boy down the street wonders if my PD is contagious.

A friend with PD phones, recently having the same surgery as me, attempting to get rid of his PD. I don’t know what to say, feel as though I’ve been a fraud by giving him false hope.

The only thing predictable about PD is her unpredictability.

Converting Anger into Action

Those of us with Parkinson’s, particularly with young onset PD, have plenty of reasons to be angry. Going from being strong, healthy and independent to having a chronic, progressive, debilitating disease such as PD, can be devastating.

I’ve been off and on with my anger about having PD for the past eleven years. Growing up with 16 years of Catholic education, I learned early on that angry words, behavior and even angry thoughts were sins. Being angry was lumped together with the commandment “Thou shall not kill.” The theory was if you get too angry, you might end up killing someone. Anger was one of the Seven Deadly Sins.

Anger as a normal emotion and a fundamental part of the human condition is a relatively new concept for me. Most of us have been pissed off, upset, enraged, mad about something or someone, including ourselves. The comedian, Gilder Radner described her battle with ovarian cancer as being “in a room of anger” in her book, It’s Always Something.

I began making some headway along my PD path when I first acknowledged my anger. Once I owned up to it, it was time to take care of it. I didn’t want to live in a room of anger but wanted to find some ways to manage it. I realized that the stress of not managing my anger would only result in the exacerbation of my PD symptoms.

For the most part, I’ve been able to avoid the depression (anger turned inward) that often accompanies PD by attempting to convert my anger into action. For me, the following action steps have helped:

· Writing letters when I perceive an injustice in the PD community

· Volunteering to promote awareness and understanding of PD

· Co-founding a PD support group

· Writing a blog about living with PD

What steps might you take to help convert anger into constructive action?

Facing Our PD Fears

I was obsessing about my fears and worries about having Parkinson’s Disease (PD) yesterday, when I received a phone call from a woman who was considering joining a PD support group. She was trying to determine the level of functioning of the group members. She attended another PD support group many years ago, everyone was so much worse than her, and it was depressing. I tried to reassure her that there were a number of high functioning members in this group, that everyone with PD exhibits different symptoms, and each person’s PD progresses at different rates.

But I missed the fear in her voice about what’s ahead for her with PD—how will her PD manifest itself, how quickly will her PD progress and ultimately when will she die from/with it.

I had a similar experience 11 years ago. Two days after I was newly diagnosed with PD, my husband Tom and I attended a PD support group geared for young-onset patients. We couldn’t remember much about the content of the meeting, but what we observed will stay with us forever. Some people’s arms and legs were writhing and flailing, others were squirming, and one patient was in a wheelchair. We freaked out, left early during a break and had nightmares for three nights.

If this was going to be my future with PD, I didn’t want any part of it. I avoided all PD support groups and scheduled my neurology appointments early in the morning to avoid the shaky folks living with PD. I led my life based on Sir Winston Churchill’s quote: “Men stumble over the truth from time to time, but most pick themselves up and hurry off as if nothing happened.” My magical thinking sometimes went like this: “If I didn’t talk about PD or see people with PD, then I didn’t really have it.”

My biggest regret was not being open about having PD sooner. I missed opportunities to help myself and provide support to others.

I hope the woman who called yesterday decides to attend the support group. I trust that she will realize, as I recently have, that there is support for her in good times and in bad times and that we are all on both sides of the fence at some time in our lives.

My Biggest Regret

My friend Janet remarked how much I have changed during the past couple of years. In the past, when someone asked about my Parkinson’s Disease (PD), my typical response was “I don’t feel comfortable talking about it.” However, during the past year, I’ve become a PD advocate whose mission is that of educating others about PD. I talk to others in person, by telephone or online daily about PD. In fact, sometimes I go out of my way to introduce the topic of PD.

My biggest regret along my PD path was not sharing with others about my struggles with PD. I knew that if I didn’t share about PD, others such as my husband, Tom, and previous accordion teacher, Alice, would bail me out by speaking for me. I never knew who knew about my secret, and what they knew.

I was ashamed about having PD as though it was my fault that I had this malady. I was living a lie. I insulted people by not sharing my life with PD with them. I deprived people of the opportunity to provide support.

When I started hearing rumors at work that I had MS, I knew that I had to come clean. In March of 2005, I met an online friend, Joel, who shared his email that he sent to his friends about his diagnosis of PD. He was overwhelmed by the positive responses when he disclosed his PD. Joel told me that it took a lot of courage, but it felt like a huge weight was lifted.

On Monday, April 4, 2005, I decided it was time to stop concealing and start revealing. I sent an email (or message by regular mail for those without computers) disclosing my PD to more than 300 friends, family, work associates and hospital volunteers. I ended my “coming out” story with: “Having Parkinson’s is no longer a taboo subject for me. Please feel free to bring up the topic and ask questions. I may provide more information than you ever wanted to know.”

Tears streamed down my face when I hit the “send” button on my computer. Within two minutes, I started receiving supportive responses by email as well as a steady stream of telephone calls. By the time that everyone had received my message, I received over 150 responses – all positive and supportive. I’ve saved every response and read them when I need a lift. Like Joel, I too felt tremendous relief.

My life is different now. When I dropped $85 of coins on the floor of the bank, it provided an opportunity to explain to the teller that I had PD. When I couldn’t fill out a mailing form at the post office because my PD fingers and I told the clerk about PD, her response was, “I’m more than happy to help you with that.”

Although I have regrets about how I handled the topic of PD in the past, I am currently providing others the opportunity to give support and am delighted to be receiving lots of it.