Shake, Rattle and Roll

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.