Shake, Rattle and Roll

Personal Perspective on Parkinson's

Personal Perspective on Parkinson’s

By Sara Ochs

Guest Blogger

Copyright 2017

"Sara! Come sit down with me and listen to this song." Youtube is calling again and with a sigh, I try to find an excuse to get to the kitchen and help my mom with the dishes or take the dog out for yet another potty break. You see, my dad sits comfortably in his La-z-boy recliner for the majority of the day (which is hours on end), watching the endless classic rock videos taking him back to the normal life he once experienced and enjoyed...the life before Parkinson's set in.

All those around him are searching diligently to find some purpose of life for him as he slips into an isolated "coma" of the mind. My father is currently in stage 4 of the disease. Lucky for him, his grandchildren keep him on his toes with the occasional, "Grandpa, catch!", as a workout ball comes flying at him full force. Or, the newest fuzzy addition to the family jumps up on him licking his beard uncontrollably, scampering for all those yummy scraps from the previous meal. He definitely gets his fair share of attention whether he likes it or not!

By far, I have the most caring mother a person could ask for. She is selfless in every way towards my father. I mean, who gets a whole bowl of seasonal fruit, scrambled eggs and homemade whole wheat bread for breakfast everyday! She cares for his every need and takes on the burden of a life that was handed to her unexpectedly. We all make plans for the future and have goals we wish to accomplish. My parents longed to serve a mission for our church and travel the world together but the cards just didn't deal that hand.

The road has been a long, burdensome one. Rare cases find that long-term disability is an option also if you have the right resources, but don’t expect to see any social security benefits! Then there is the headache of 5 different neurologist who all think he needs a different medication, all with different side effects that go along with them, from horrible tremors to hallucinations. You have non-stop physical therapy, frequent dentist appointments because eating and brushing become very difficult, applications for breathing treatments, in-house care and the list goes on. Living in a state that has now legalized the use of marijuana, that came up in our conversations. We had even discussed the possibility of the use of marijuana in the pill form because of studies that have been made on the Cannaboid receptors that can improve tremors and may alleviate dyskinesia. However, our moral conscience kicks in, being that we don’t agree with the use of “natural drugs”. Bottom line, those who are in this boat know that the storm is tremendous!

Now what?... Well, we all have that gift of agency. We get to choose happiness or sorrow. We can choose to mope around all day feeling sorry for ourselves or do something about it! And that is just what our family chose, to do something about it! We all decided to have an outing, at least once a month, to take my father out of his comfort zone into the great outdoors. Now, he does get outside occasionally but this is an outing that would involve a longer period of time with much more activity than normal.

So, off we go! This is where the story gets interesting. Every drug that has been prescribed to my dear old dad cannot give him the joy and stimulation that the outdoors provides. Just this last weekend we spend the day in a regional park, listening to the birds sing, watching the squirrels chase each other and laughed as we raced around in a 4 seater pedal bike. My dad had the chance to laugh, heighten his senses and experience a piece of his life before it all changed. I have to say that the worst thing for a patient with Parkinson's is for them to sit around watching TV or stay inactive. Their speech slows down, mobility is more crippling, overall they become completely immobile. We will all be making a better effort to improve his quality of life through the God given beauties of the Earth.

I think everyone would agree that the quality of life is more important than life itself. As loved ones and family, we choose quality of life for my father. As we accept the change Parkinson's has brought into our lives, we can now focus on those things we CAN change to make the quality of life the best that it possibly can be. That's the bigger picture!

About Sara Ochs...

Sara's parents, Ron and Velda, live in California having six children between the two of them. Youngest daughter Sara lives the closest in town with her husband Russell and two children,Tyler and Afton and they spend regular time with Sara’s parents. All the siblings are very active in wanting to care for Ron and his disease but some live as far as Utah. Ron grew up enjoying the outdoors, hiking, camping and spending time with family. He worked over 20 yrs as a heavy truck salesman for Kenworth, Peterbilt and International. He was very good at building and constructed a beautiful addition to their home they currently live in. Ron was formerly active and known for doing something at all times so when Parkinson's set in it was life changing to say the least.

 

 

Sara's parents, Velda and Ron, on their trip in San Diego

Discovering Clues About Your Parents’ Well-Being: When They May Need Some Help

With the holidays rapidly approaching, many of us will be visiting our parents who may live across the country or on the other side of the world. You may see signs of declining mental or physical health in your parents. You might not be sure if your parents need help, but you suspect that something is not right. How can you tell whether the changes are simply a part of aging or if they’re a sign of something more serious?

While you care about and love your parents, it’s difficult to be objective about them when you live so far away, and you see them so infrequently during the year. For this reason, I have developed these questions that act as a guideline for the adult children when visiting with their parents.  It may highlight some red flags that suggest in areas that you can follow-up with at a later time. I only wish that I had such a questionnaire when my parents’ health was declining.

Keep these areas in mind when you observe and interact with your parents. Don’t make a big production of it. Take notes later when you have some quiet, private time. You will likely have to complete one questionnaire for each parent.

If the Questionnaire is too long, complete it in sections and/or on different visits.

Questionnaire: Detecting Clues about the Current Well-Being of Your Parents

Body

Has  your parent…

 Experienced noticeable weight loss/gain?

Are their clothes baggy or too tight?

Has there been a significant weight loss or weight gain since your last visit?

Does the parent remember to eat or forget to eat?       

Does the parent drink enough water on a daily basis?

Grooming

Does the parent perform the following grooming duties on daily/regular basis:

Bathe and shower without assistance; knows how to regulate hot and cold water?

Shave?        

Have a strange body odor?

Use deodorant?

Brush teeth; how frequently?

Floss teeth; how frequently?

Wash face?

Dress self?

Wear clean clothes;  knows how to use the washer and dryer and wash clothes?

Shampoo hair; comb and brush hair?

Get hair cut and styled?

Apply appropriate makeup?

Medical/Dental

Make medical appointments and arrange for transportation to/from appointment?

Make dental appointments and arrange transportation to/from appointment?

Wear dentures if applicable?

Wear hearing aids, if applicable?

Wears eye glasses, if applicable?

Orders and organizes medications and puts it into pill container for the week and month?

Take medications on a timely basis?

How many times has your parent been hospitalized during the past year?

Does your parent have difficulty managing the activities of daily living?

House

Attempts to clean house but doesn’t seem to make any headway?

House looks tidy or messy most of the time?

Drastic change in housekeeping standards (from high standards to low or from low standards to high)?

Knows how to use the phone to make local and long-distance calls on the land line and cell phone?

Knows how to charge the cell phone?

Knows how to use the voice mail to leave a message and retrieve a voice message?

Uses the computer for emails, text messages, and sending photos?

Does your parent exhibit hoarding behavior?

Do piles, boxes and clutter make it difficult to maneuver throughout the house?

Could the parent quickly exit the house in case of emergency?

Kitchen Area

Uses the appliances safely (particularly the stove)?

Forgets that food is cooking on the stove and burns pan and food?

Is there stale or expired food in the fridg or kitchen cabinets?

Maintains multiples of the same item (8 boxes of cereal, 5 jars of peanut butter)?

Social

Does your parent…

Get together with family, friends and neighbors?

Participate in religious activities and services?

Has an old hobby been abandoned?

Has a library card gone unused?

Does a family member or friend check in on a regular basis?

What procedures are established for fire, earthquake, hurricane, tornado, flood or other disasters? Does the parent understand the plan and where they should meet if there is a disaster?

Transportation

Can your parent…

Safely drive a car (or has been tested and determined to be a safe   driver)?

Drive at night?

Drive the local streets instead of the highways and freeways?

Who is in charge of car maintenance and repair?

Does your parent…

Understand the warning lights on the dashboard—sufficient oil, gas, antifreeze, windshield-wiper fluid? Does parent know the meaning of these warning lights?

Use other modes of transportation in addition to a car—e.g,  bus, taxi, family or friends who drive?

Have nicks or dents on the car?

Fasten seatbelt?

Avoid distractions while driving—e.g., avoids conversation, avoids listening to radio or CDs?

Show signs of dangerous driving: tailgating, drift from parent’s lane, drive below the speed limit, reacts slowly to lights or other cars, and mixes up gas and brake pedals?

Finances

Does the parent…

Maintains and balances check book?

Has a list of bank and investment accounts?

Has a list of assets and liabilities?

Are there piles of unopened bills and personal mail (such as greeting cards) scattered around the house?

Are there letters from banks, creditors, or insurers referring to overdue payments, overdrawn balances, or recent accidents?

Are there thank you messages from charities for donations that the person doesn’t remember making? (Is the charitable organization attempting to get another donation when the parent recently provided a donation?)

Magazines that the parent doesn’t remember ordering (perhaps the parent didn’t order and somebody was pulling a prank by mass ordering of magazines).

Has a tax professional that organizes and prepares tax info and forms?

Speech and Voice

Has your parent experienced a change in speech? What was the change?

Is your parent’s voice weak or strong?

Swallowing

Does your parent…

Frequently choke on water or solid foods?

Have a fear of choking?

Avoid taking medication because it’s too difficult to swallow?

Contacts

Does your parent…

Know who to call in case of emergency?        

Know who to call if there are plumbing, heating, problems in the house?

Cognitive

Does your parent…

Frequently forget the same things over and over?

Frequently have trouble finding the right word (word-finding) in conversations?

 

Adapted from:

Caregivers and caregiving basics: Deciding when it’s time for home care

http://www.vnsny.org/caregivers/caregiving-basics/deciding-when-its-time-for-home-care/

and http://www.vnsny.org/caregivers/

 

 

Care Partner, Tom Kelsall, Answers the Tough Questions

1. How has your relationship with your partner changed since DBS?

We are closer in terms of more conversation, sharing the cooking, eating out, walking our dog, going on cruises, attending shows and movies together and going out with friends.

We have more patience and understanding toward each other.

We are less active in terms of outdoor activities such as biking, hiking and cross-country skiing.

We are less active as a couple and do less entertaining at home with friends.

We have developed more patience and understanding of neurology, neurosurgery and neurosciences. Programming sessions of the DBS stimulator has been particularly challenging, when much of it seems to be trial and error and makes us wonder if treating PD and DBS is really “rocket science.”

I have developed patience and understanding when dealing with Kate’s changes in mood, lack of energy, upset stomach, constipation, stiffness, lack of range of affect, low voice volume/tone, dyskinesia and irregular sleeping and eating patterns.

I have developed more compassion and empathy for what Kate is experiencing with PD and DBS. I am grateful that Kate’s PD isn’t a lot worse for her.

2. What are the best things that have happened to you, your partner and your relationship since DBS?

We’ve become closer and more supportive of each other through the entire PD/DBS experience.

We have become more empathetic toward others who are experiencing “worse” symptoms.

We are more appreciative of how well Kate is doing (e.g., as compared to the symptoms of others with PD and DBS).

I have developed more compassion for Kate’s trials and tribulations with PD and DBS, including leaving her career early (which she loved!), her ups and downs with fluctuations of meds and programming, her commitment to those with PD and DBS through her volunteer work with the DBS support group and assisting patients as a volunteer as a volunteer DBS patient and family liaison at the hospital, and creating an award-winning blog. Amazing accomplishments for anyone, and particularly significant for a person with PD for 17 years and DBS for 8 years.

Opening the door to PD and DBS has presented Kate with new opportunities she never would have experienced without PD and DBS.

We decided to take this PD/DBS ride together, for better or for worse!

3. What are the worst things that happened to you, your partner, and your relationship since DBS?

“Downsizing” our previously active social and recreational activities has been difficult and has resulted in a less satisfying lifestyle. Becoming homebodies has been an adjustment.

Kate’s voice deterioration has been an on-going source of frustration, but we are working on it and making headway (adapting).

It has been more of a challenge for me to find the time to do some of the things that I enjoy such as bike-riding, fly-fishing, and walking with weights.

The challenge to Kate is maintaining her meaningful activities such as her volunteer work, writing her internationally recognized blog, writing and completing her book, maintaining contact with friends either in person or by email, taking Broadway dancing classes and performing with the Rockyettes.

4.What are your biggest worries about the future?

We worry a lot.

We worry about each of us losing our independence with the progression of PD and Kate’s increase in symptoms.

We worry about Kate losing her voice and not being able to communicate verbally.

We worry about Kate losing her mobility and not being able to go places on her own if and when she needs to stop driving.

We worry about if and when Kate may need the assistance of a wheelchair.

We worry about Kate not being able to maintain her meaningful activities, which could result in inactivity, withdrawal and depression.

We worry that Kate’s meds and her DBS will stop working with the progression of the disease.

We worry about the cost and availability of quality health care after I retire.

I worry about maintaining my own patience and health as a care partner and being able to provide support to Kate.

5. What advice would you give couples considering DBS?

Talk to each other.

Talk to people who have experienced DBS.

Do research. Read blogs, books and articles.

Question doctors.

Make an informed decision as a couple. It is NOT one person’s decision!

Weigh out in writing and through discussions the pros vs. cons of DBS surgery.

Develop realistic expectations for the results of DBS and discuss these expectations with your DBS team to determine if they are in synch with yours.

6. How have you been able to avoid burnout in your role as care partner?

I have been able to enjoy the passions in my life, including biking, fly-fishing, dog-walking, in addition to spending leisure time with Kate.

My work can get intense at times (after 40 years as a psychotherapist), so I need time for fun away from work as well as time with Kate and away from her. Of utmost importance is to maintain balance between couple and individual time and home vs. work.

The ongoing challenge for me is to continue to make new friends and enjoy more sociable activities.

7. Is there anything else that you would like to say?

To protect yourself emotionally, I would encourage DBS participants to keep expectations of success to a minimum—a task which is easier said than done! I believe DBS surgery is worth the risk, no matter how minimal the success. I think if the DBS surgery can improve your life with PD even one iota, it is worth the risk.

DBS is not a cure for PD as the disease continues to progress
despite the surgery.

It is easier to “bear the load” of PD and DBS as a couple than as a single person. Your support network and resources are critical to maintaining your life satisfaction and your sanity.

 

Tom Kelsall is the husband of Kate Kelsall. Tom and Kate celebrate their 39th wedding anniversary next month.

 

 

 

 

 

 

 

 

Living Alone With Parkinson's

Living Alone With Parkinson's

By Neil Sligar

Copyright  © 2013

Dear Kate,

You recently remarked about the labels “caregiver” and “care partner”. What irks me about these terms is that they are often used as if all who live with Parkinson’s have the benefit of someone nearby to help them get through the day. Many of us aren’t so fortunate.

In Australia, 24% of all households in 2011 were identified by the Australian Bureau of Statistics as occupied by one person only.

http://www.aifs.gov.au/institute/info/charts/index.html

In the United States the figure is said to be 28%.

http://www.pbs.org/newshour/bb/social_issues/jan-june12/goingsolo_03-27.html

The proportion of single person dwellings is higher in cities.

Those living alone with Parkinson’s are under-represented in Parkinson’s support groups mainly because they have no way of travelling.

How many of those living by themselves while trying to cope with advancing Parkinson’s are similar to the following gentleman? He lived in a mobile home, was single, had been diagnosed with PD, was in his early fifties, had worked for a small employer, had no employment-related sickness benefits, had handed in his driver’s licence, and survived on a Government pension. As a Council member of my state association I’d been asked to increase the number of support groups in suburban Sydney. We arranged to meet the local press in his area and tell them of how much a Parkinson’s support group would mean to those like us. He did so admirably.

Shortly after, I heard he’d moved into a nursing home. I asked its location but those approached didn’t know. Similarly, a single lady who attended my local support group “disappeared.” She has moved out of her residence; we are unaware of her relatives.

The special challenges of pwp (people with Parkinson’s) who live alone are seldom featured in Parkinson’s publicity. It’s as if we don’t exist.

Similarly, pwp in the workplace are paid scant regard. I know the principal of a legal practice close by my financial planning office. John was diagnosed with Parkinson’s disease six years ago. His specialty is criminal law; much of his time is spent in court defending the accused. I also know an architect with PD and am aware of a medical specialist who works four days a week. Then there was a professional development day when from the audience I heard a gentleman tell us that he was still working five years after diagnosis.

I used to be keenly involved in attracting prominent speakers to my support group but have withdrawn to concentrate on my business. 

There are over sixty Parkinson’s support groups in the state in which I live in Australia. To the best of my knowledge, none can be attended by phone or internet. Instead, I tap into U.S. internet resources (and am most grateful.) Younger pwp make great use of the internet. National boundaries mean little as people converse in chat rooms, by direct email, and other discussion groups.

In my part of the world, the stereotype of a person with Parkinson’s…..a middle class retiree of mature years living at home with husband or wife….may become reality as young pwp lean to the internet while pwp in the work force can’t see any relevance of locally-based Parkinson’s associations. Those living alone face not only the tasks of daily life….for which those with care partners have assistance….but live with the constant tension of wondering “where will I go from here?”

The following was included in my state Parkinson’s association’s 2012 annual report. Its author was “anonymous” but it could even have been me.

My day starts the night before. The timing of medication, when I’ll shave, when I’ll do up the top button on my business shirt, when I’ll leave home, when I’ll arrive at the railway station, when I’ll do damn near everything are planned and jotted down. When medication hasn’t cut in and fine motor skills are beyond me, I catch up on reading. 

I was diagnosed with Parkinson’s disease in 1998, live by myself, remain in full time work as a certified financial planner, and am 67 years of age. My capacity to function physically is dictated by medication. For me, relief also follows intense exercise.

Some activities used to rate highly in priority but are no longer rated as important. Gardening is an example; I took pride in my vegetable patch and Australian native shrubs. My back yard now is full of weeds. The front lawn is spic and span, thanks to those paid to keep it that way. Some aspects of daily life remain high priorities; a slip in these won’t be tolerated. Attention to clients is uppermost.

Life isn’t a breeze. Every four or five hours, tremor emerges increasing up the Richter scale if medication hasn’t been taken on time or the day is stressful. Rigidity can overtake me, aggravating an already clumsy body. With Parkinson’s disease, the mundane becomes important. My ability to reach the 7.15am breakfast meeting is determined the previous night when creating the “to do” list for to-day.

Dressing takes me at least double the time it once took. Every button is a challenge. If all has gone to plan, the medication has cut in by the time I reach the meeting venue. I find somewhere private, do up the button at my collar and put on my tie. I dread reaching a stage at which my dress standards are any the less because of Parkinson’s.

Sleep is a precious resource. Many are the nights I lie shaking in bed around 3am until attempting to sleep seems futile and I repair to my computer to see if any northern hemisphere friend has contacted me.

At 8.30pm, three nights each week, I head for the gym. I’m also there for an hour on Saturday or Sunday. Vigorous exercise is my outlet.

“You look a different man when you leave compared to when you arrive” said the gym receptionist last week. She’s right! I arrive at Aquafit gym around 9pm, often shaking too greatly to use my bar-coded entry card. The receptionist lets me in. My gym buddies are mainly people in their teens, twenties and early thirties. They encourage and assist me immensely. I try to return their kindness. 

I go home exhausted but happy. Sleep comes quickly and endures longer following exercise.

Neil Sligar

Sydney, Australia.

Caregivers: Your Input Is Valuable

Caregivers of Persons with Parkinson’s Disease

Be part of an important Parkinson’s disease (PD) study:

• Are you a primary caregiver of a person with PD?

• Do you want to talk about your experiences in caring for the person with PD?

If you answered YES to these questions, you may be eligible to participate in a PD study.

The Research: The purpose of this study is to determine how caregivers define the concept of caregiver strain in light of caring for persons with PD. The results of the study will help to develop a new questionnaire to accurately measure caregiver strain. The knowledge gained from this research project may be used to improve training for health care workers to help persons with PD and their families.

How You Can Help: Your input is important because it offers you an opportunity to be heard and it will help people in the health care field understand your care giving experiences, which in turn, will create better ways to improve services for you and other caregivers now and in the future.

Persons eligible to participate are caregivers who are 21 years of age and older and are or have been the primary caregiver of a person with PD. Caregivers can be spouses, adult children, other family members or close friends of the person with PD.

This study involves participating in an online survey which will take about 20 minutes. The survey questions will include sharing your caregiving experiences, how you view caregiving and how your define caregiving concepts. Your participation is voluntary. Your identity will not be recorded. In any sort of report we might publish, we will not include any information that will make it possible to identify a participant.

If you are an informal caregiver of a person with PD or know of one, and wish to take part in this study, please go to the following website to complete a general demographic form and the survey:

http://tinyurl.com/7nwd4gb

If you would like to learn more about this research project, send an email to Dr. Maryann Abendroth at [email protected] or call at 1-850-644-5979.

Early Diagnosis DOES Matter

By Carolyn Allen Zeiger, Ph.D. Licensed Psychologist and spouse of someone with Parkinson's Disease

Copyright © 2012

In Parkinson’s Disease, early diagnosis does matter—for some obvious reasons, and also for reasons that are rarely discussed.

The question I always hear people with Parkinson’s (PWPs)—and their spouses—ask about someone else with PD is not, “How long have you had PD?” but “When were you diagnosed?”  Given that there is no definitive medical test to confirm the diagnosis, the delay between symptom onset and diagnosis is generally a few years.  The thinking used to be that an early diagnosis didn’t matter.  After all, at this time it can’t be cured, it’s going to progress, and perhaps it is best to delay the use of dopamine replacement medications since they only provide symptom relief and in addition, they tend to lose their effectiveness over time. Generally unstated, is also the thought that early in the progression of the disease it doesn’t have a big negative impact on the patient, or his life in general.  He’s doing well enough to get by.  But is he or she? And what about the spouse or partner?

Fortunately, more doctors are focusing on early diagnosis.  But not for a reason that I find compelling: the impact of PD on our most intimate relationships—spouse, partner, lover. So many times I have heard, and experienced myself, the painful impact of undiagnosed PD on our closest relationships. Sometimes the impact is so great as to mean the ending of even long-term marriages when unidentified symptoms become burdensome or sources of ongoing conflict.  

The precise source of the problems varies depending on the varying symptom patterns.  Here are just a few stories:

Facial masking.  A wife wept as she told me, “He never smiles at me anymore. I kept asking, are you angry with me?  Don’t you love me anymore? “ He didn’t know what I was talking about. Finally he did get angry. “Just leave me alone! Nothing is wrong.”  She began to pull back; he responded in kind.  A long time, close and open relationship became distant and closed off.

Fading Voice.  When the PWP can’t be heard, he feels ignored, or is convinced that his partner has a hearing problem because he is not aware that his voice has become soft.  His speech might be slurred and hard to understand as well.  His partner becomes impatient, and perhaps a little embarrassed, so she begins to speak for him, the PWP pulls back, goes silent and a destructive pattern has been established.

Apathy.  Partner: “Get off that couch and DO something!  All you do is sit around.”   

PWP: “But I don’t feel like doing anything.”   

Partner: “If you would just get moving, you would.”

But no amount of either nagging or kind encouragement makes a difference. The spouse starts doing things by himself because “Nothing I do gets her moving, and I don’t want to stay home all the time.”  Both are lonely.

REM Sleep Behavior Disorder.   During the night, a man is awakened by his wife screaming and swearing at him.  He’s completely shocked and furious.  “I didn’t do anything to deserve that!”  When he wakes her up, she doesn’t have any idea what he is talking about.  Another PWP punched his sleeping wife—convinced he was actually “saving her from a gorilla”.  Of course the gorilla was in a dream that he was unknowingly acting out.

Of course, symptoms interact and exacerbate each other. Foot dragging combined with fragmentation of sleep at night and daytime fatigue  can lead to frequent tripping and falls, injuries that put a burden on them both, and lead to injuries and/or health problems for the partner as well as the PWP.

In all these scenarios, the accumulation of seemingly minor symptoms can lead to a major disruption in the relationship. The partner with PD feels constantly scrutinized, unfairly criticized, and nagged. The care partner feels ignored, disbelieved, and abandoned.  Over time, both partners may feel mistreated or simply neglected.  The distance and constant tension of conflict, even low-level conflict, erodes the intimacy in the relationship.

One of the areas where couples experience the most pain is in the most intimate relationship: sex.  Many aspects of PD can interfere with a couple’s sex life. They include fatigue, apathy, loss of erectile function, reduced libido, and anxiety. All are neurologically based symptoms that can appear to be psychological (and might be that as well!), or stem from something going wrong in the relationship. Some of the physical symptoms such as awkward movements, loss of bladder control or drooling can be embarrassing or repellant to either one of them. The result is that either partner may pull away or give up.  Talking about it is important, but isn’t sufficient to solve the problems when the cause remains a mystery to them both.

In talking to both PWPs and their partners, I very rarely hear about a doctor inquiring about a couple’s sex life—before or after diagnosis. Sometimes younger clinicians assume that an older couple doesn’t have a sex life any longer. Or the couple might think they are just “too old” now, so they don’t even think to tell the doctor. For younger couples this can be even more disruptive to the relationship. As a psychologist, I know this is a difficult subject for any patient to broach, whatever their age or stage in life, and so it is seldom addressed.

What can be done? 

More doctors are understanding that PD is more than a movement disorder.  Some are taking a whole-person focus and inquiring about your whole life.  This may seem odd or inappropriate—sex is not what you came in to talk about—nonetheless,  it is invaluable. You can help the clinicians out by telling them everything that is bothering you, whether you consider it physiological or psychological. Because my husband’s symptoms were more autonomic than motor, no doctor would consider evaluating him for PD, even when asked. Nevertheless, because a nurse asked us to tell her everything we were concerned about, the interview revealed the pattern of autonomic as well as movement related disorders that characterize PD. 

And after you receive a diagnosis, continue to report all your concerns—both partners’ concerns.  Because the PWP is often not aware of his symptoms, the perspective of those closest to him is essential for both diagnosis and selection of the best possible treatment of symptoms.  Also what bothers the partner may not bother the PWP and vice versa.  Both of you count. 

Read books that focus on all aspects of living with PD, such as Brain and Behavior by Joseph H. Friedman, MD, and 100 Questions and Answers about Parkinson Disease by Abraham Lieberman, MD. Read and contribute to this blog and others that focus on PD. 

Talk about your relationships in support groups.  I have found other members are so relieved to have someone bring up difficult topics, to know they are not alone, and are grateful to other members who share ideas and approaches that are helpful. 

Have your support group leaders bring in experts to talk about the impact of PD on relationships—including sex. When I have given such talks, some members begin to talk openly while others sit quietly listening.  Participants share their pain, fears, confusion, guilt, and then sigh with relief as they come to understand what is going wrong and ways to address it. Afterwards, both the quiet and the talkative participants tell me how much it has helped them.

Share this article with neurologists to help them understand more about how PD impacts relationships and the value of early diagnosis.  We health professionals truly want to be helpful, and to do so, we need to educate and consult with each other.

Medication may provide “only” symptom-relief, but relief can be essential to restoring and preserving your relationship.  Also, treatment is more than medication.  It includes exercise. Exercise of various kinds has been shown to not only improve function, but to stimulate neural growth. In our work teaching yoga for Parkinson’s, our students tell us that it improves mood and self confidence (And we can see it!). Just having fun is therapy!  Treatment can also include support groups and psychotherapy, enjoyable activities—anything that improves your quality of life.

A combination of treatments tailored to the individual PWP, taking into account the person's life situation and key relationships, provides a better quality of life for everyone, both individually and as a couple. Improvement in one aspect of your life starts a positive feedback loop, and each person's life becomes more satisfying!

Carolyn Allen Zeiger, Ph.D. has over 40 years experience in the fields of clinical, organizational and health psychology. With Kate Kelsall’s husband, Tom, she founded a Parkinson’s care partners’ support group in Denver, and assists her husband Paul in teaching yoga to others with Parkinson’s Disease and their partners. Carolyn is a licensed psychologist in the state of Colorado, and is currently an adjunct faculty member at University of Denver.

 

 

Caregivers – Your Opinion is Needed

 
Caregivers and care partners aren't usually asked their opinion about their communication with the Parkinson’s patient and how it impacts them.

However, Dr. Jessica Huber, a researcher at Purdue University, wants your opinion and is currently conducting an online survery for caregivers/care partners regarding speech and voice and a new device intervention for improving communication.

Spend 15 minutes completing this worthwhile survey. You will be contributing to the knowledge about the effects of treatment for speech impairments in individuals Parkinson’s disease on caregiver burden. The link to the survey: https://www.surveymonkey.com/s/SpeechVive

 

SpeechVive Research Participant Information Sheet

SpeechVive™ Survey for Caregivers for Individuals with Parkinson’s disease

Researcher: Jessica E. Huber, Ph.D, Purdue University Department of Speech, Language, and Hearing Sciences

Purposes of Research: The purpose of this research is to survey caregivers of individuals with Parkinson’s disease and gather information regarding SpeechVive™, a new treatment for reduced vocal loudness levels (hypophonia) related to Parkinson’s disease.

Specific Procedures to be Used: We will provide you with a survey to complete regarding a new treatment for speech impairments in individuals with Parkinson’s disease, SpeechVive™.

Duration of Participation: The survey should take approximately 15 minutes to complete. The survey can be emailed or mailed to you. We can process your answers over the phone, or we can bring the survey to you in person. The survey can be accessed online.

Risks to the Individual:  Participating in the survey is of minimal risk to you, equal to that which is found in everyday life. Some of the material on the survey may be considered sensitive or distressing. There is a risk of breach of confidentiality. However, safeguards are in place to minimize this risk.

Benefit to the Individual or Others: There are no direct benefits to subjects. By completing the survey, you will be contributing to our knowledge about the effects of treatment for speech impairments in individuals Parkinson’s disease on caregiver burden. This knowledge may help to improve speech treatments for people with Parkinson’s disease and reduce caregiver burden associated with treatment.

Compensation: There is no compensation for participation in this study.

Extra Costs to Participate: There are no extra costs for you related to your participation in this study.

Confidentiality: Your confidentiality will be kept throughout the duration of the study. When the results of this research are published or presented at scientific meetings, your identity will not be disclosed. Your responses to the survey will not be released at any time with your personal information. Records that contain personal identifying information and materials generated by your participation in this study will be kept in a locked cabinet in the speech physiology laboratory (B24 Heavilon). Records with personal identifying information will be stored separate from any records of data collected from you. All data will be maintained and analyzed on a password protected computer in B24 Heavilon. Only the investigators and lab associates who are working on the project will have access to your records and data. All records and data files will be kept indefinitely. The data files may be used for future studies, but your name will not be associated with your records. If they are eventually destroyed, papers will be shredded and computer files will be deleted. The project's research records may be reviewed by departments at Purdue University responsible for regulatory and research oversight.

The Role of Caregivers for Patients with Parkinson's Disease

Presentation by Lonnie Ali- Activist, philanthropist, mother, wife and caregiver of Muhammad Ali

Wednesday, October 27, 2010
 
11:30 AM - 12:30 PM Refreshments
 
12:30 PM - 2:00 PM
 
The Cable Center
Daniels Great Hall - Mezzanine
2000 Buchtel Blvd.
Denver, CO 80210

For questions or to RSVP, please contact:
Cristina Taormina- Parkinson Association of the Rockies-
303-830-1839 or [email protected]

Everything You Ever Wanted to Know about Yoga and Parkinson's Disease

Paul Zeiger and Carolyn Zeiger have set up a terrific new web site about yoga and Parkinson's Disease. Also included are articles by Carolyn on caregiving.

Their web site is easy to navigate and user friendly.

Check it out at:

http://www.parkinsonsyoga.org/

Parkinson's Disease Forces Good Change

By Carolyn Allen Zeiger, Ph.D.  Copyright © 2009

What!?! How can the unsought, challenging life changes forced on us by PD be a good thing? For me this has at least two answers:

1. As a theologian friend said recently, “Sometimes our service to humanity is chosen, and sometimes we are drafted.” I was definitely drafted into my service to humanity via PD! The first type of service I offer is to one person: my husband. Even when it is only one person, still it is service to humanity to take on the responsibility for supporting a person through a progressive, degenerative disorder ‘til death do us part. The second is to my brother, to whom, for the first time, I am no longer one of several “little sisters,” rather, almost a big sister to whom he turns for information and support.

Parkinson’s has also pulled me into a larger form of service in the work I am doing individually, and together with my husband, in serving the community of those with PD plus their families and friends who support them.

2. Another good change is that Paul and I are bringing together our diverse training, skills and careers into an activity—and service—that we do together. Given that due to PD and financial constraints we must basically stay home and be together most of the time, this is a wonderful new way of life. It gives us something we can do together that is good for others, and therefore meaningful to both of us, and also fun.

3. OK, more than two answers. Our PD related work has also turned into yet another career for us both that is bringing us needed income as Paul’s medical expenses increase and the income from our investments decreases!

4. Doing this work together also is making it possible for Paul to continue doing work he loves that he could no longer do on his own, so it is even a form of therapy for him.

5. What’s more, Paul has cared for me through some serious medical problems over the years, and it feels good to do the same for him.

6. Wow! I am now up to number 6. This one is about as fundamental as you can get. Sogyal Rinpoche, a Tibetan Buddhist teacher, has said that how well we die is closely tied to how well we learn to navigate change during our lives. This makes such sense to me. The two most fundamental changes in life are birth and death: the transition into life and then out of life. The latter is the one change that we can prepare our selves for, throughout our lives, not just at the last gasp.

At the point in our lives when we are most likely to become rigid and devoted to maintaining “things as they are,” Paul and I have been called upon to make some drastic changes in our lives, and our sense of who we are and are not. Thinking of this as training for making the Big Change in years to come, (or at any moment) has inspired me to embrace these changes as opportunities to grow, to enhance my ability to relax into change, see the opportunities for transformation and even delight. To get some “oh, boy!” out of it instead of “oh, no!” To see myself as getting desired training instead of being on a grim forced march.

Of course I don’t feel this way every day, let alone every minute. It is more like a reminder when I am feeling overwhelmed or put upon. Choose it! Embrace it! Go with it! I sat with my mother as she died, holding her hands and looking into her eyes, and that is exactly how she went out—like an athlete who had prepared for the final event. Moving forward instead of resisting what ultimately cannot be resisted.

 

Carolyn is a clinical, organizational and health psychologist. Her husband, Paul Zeiger, Ph.D. has become well known as a yoga teacher with PD who teaches yoga to others with PD. She is his assistant in his classes for the Parkinson Association of the Rockies and also with his private students.

This article was originally published in the Winter 2009 edition of the Iowa APDA newsletter, The Informant. It is reprinted with permission from Iowa APDA and the author.

In Search of Meaning

In Search of Meaning
By Tom Kelsall
Copyright © 2008

What do a 45-year-old former journalist, a 50-year-old former urban planner, a 53-year old former lawyer, a 47-year-old former technician and a 58-year-old former volunteer coordinator have in common? After 10-15 years of enduring young onset Parkinson’s Disease (PD), these individuals were forced to give up their hard-earned careers, and their dreams of the good life were shot down early.

I am currently eligible for retirement. I can choose to retire when the time is right. PD gives a person no choice. The disease is always in control. There is no right time. I could go on to other jobs in my profession, do different work altogether, do volunteer work or just relax and have fun. PD puts people on disability and shuts down the work world for them forever. Surviving becomes a priority for most PD patients, not working, volunteering or having fun.

My own career has spanned 34 years and continues to energize me. My work has given me a sense of deep satisfaction, enjoyment and a sense of accomplishment in giving back to the community. An employee is rewarded for many years of work and commitment, while disability pays those living with PD not to work. If I had given up my career 15-20 years ago, I would not have felt the same – perhaps less complete and less satisfied in retrospect. A fulfilling career can leave a person feeling very satisfied and victorious. I am blessed that I can still choose my own course in life and not have PD dictate it for me.

Succumbing to PD is equivalent to ending a dream early, leaving a person feeling unfulfilled and defeated. I often wonder about how people living with PD maintain their dignity and self-respect without meaningful employment. I admire their struggle to find meaning and their refusal to accept defeat.

The Road Less Traveled

The Road Less Traveled
By Tom Kelsall

Yes, it has happened again. The resilience and resourcefulness of families never ceases to amaze me, even after 34 years of being a therapist!

I have met two couples over the past few months who have been coping with Parkinson’s Disease (PD) for 33 years. Holy cow! That is as long as I have been married. I wonder if I could have survived 33 years married to a PD spouse. Kate, my wife, has only had PD for 12 years. Welcome to boomer longevity, PD not withstanding. I guess we are just getting started.

How can these unique people be so loyal and enduring for 33 years? It must take one very special partner with patience, strength and commitment that is off the chart. I applaud these individuals who have set the bar quite high for the rest of us mere mortals. I am not sure if I can match their feat or if I really want to. Their solution might not fit the challenge PD is giving me. Perhaps an assisted living facility at some point in the future for Kate will be necessary to keep my sanity intact.

Although the PD road is steep and treacherous, I am coping with our PD journey just one day at a time.

Another Article by Tom Kelsall:

Insight from a Parkinson's Spouse and Social Worker

When A Daughter Becomes Her Mother’s Caregiver

I struggled between going to sleep at a decent hour last night and reading the book that I started the same afternoon. Carol D. O’Dell’s compelling book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, easily won my familiar battle between sleeping and reading.

Carol and I just had too many similarities (and a couple of major differences) not to continue reading this page-turner until the bittersweet end.

Carol, a mother of three, with her husband, invited Carol’s mother with Parkinson’s and Alzheimer’s to move in with their family. Carol, an adopted child with no siblings, attempts to fulfill the childhood promise of never putting her mother in a nursing home. Carol struggles to maintain her roles as wife and mother in her own family and roles of daughter, caregiver and mother to her own mother.

I admire Carol for taking on this challenge. I was curious how she managed to accomplish this without losing herself (she almost lost herself a couple of times, and you’ll have to read the book yourself to learn the details).

On the other hand, I am married, have been diagnosed with Parkinson’s for eleven years, and my mother, 600+ miles away, is slowly dying of Lewy Body Dementia (LBD). LBD is a horrible combination of Alzheimer’s, Parkinson’s Disease with some of the features of Schizophrenia (see Lewy’Has a Grip on Mom). Like Carol’s mother, my mother is adamant about not wanting to be in a nursing home, and until her money runs out or the caregivers wear out, is living in her own home with 24/7 paid caregivers with my sisters and brother nearby actively participating in her care and visiting on a daily basis.

Also, my mother-in-law died with/from Parkinson’s three years ago. So I’m quite familiar with the emotional roller coaster that Carol is talking about, and you too will resonate with this topic in the future, if you haven’t already had a similar experience.

I enjoy Carol’s style of writing with her honesty, sensitivity and humor. Her book is a compilation of her journals as short vignettes, that she wrote to help her maintain her own sanity, while caring for her aging mother.

I laughed and cried as I identified with almost every funny and painful incident and felt like I was in the room with Carol and her mother throughout the entire book.

In fact, after staying up late to finish this book, I woke up early to purchase copies of the book for my brother and sisters, convinced that they too will identify with Carol’s challenges in her role as caregiver.

For more information about Carol D. O’Dell and her book, check out her website at:
www.mothering-mother.com

Those Nine Letter C Words

Perhaps I’m too thin-skinned, but I bristle when I hear those nine letter C words - caregiver or caretaker. I picture a bedridden patient, unable to do any of what the neurologists call “activities of daily living” without assistance. I visualize a helpless victim, unable to contribute to family or society, while the saintly spouse caregives and the patient takes.

It makes me feel like shouting “we’re still here” as many of the six million people worldwide living with Parkinson’s Disease (PD), who are doing our bests to seek meaningful activities to fill our days and contribute to society.

Those of us living with PD are unaccustomed to being idle, as we go about our business, struggling to pass for normal. While we may be impaired, we are not helpless or demented. We are single, married, have multiple roles as husbands and wives, parents, brothers and sisters, sons and daughters, friends and neighbors.

We are the movers and shakers of the past who because of PD, have physically become the movers and shakers of the present. Most of us are well educated. We are volunteers, writers and political activists. You may find us in your yoga class or walking our dogs in your neighborhoods.

When describing these relationships, I prefer the term “support of spouses," “family care” or “kindness of outsiders” than the words “caregivers” or “caretakers.” Perhaps it’s an illusion, but I believe that in our relationships with others, we both give and take – that it’s reciprocal.

So until I’m on death’s doorstep and require full-time paid care, I will ban those two C words from my vocabulary.

The Courage to Ask

It was about time that someone asked.

Everyone always asked my husband, Tom how I was doing, but seldom asked how he was managing. Finally, someone asked him that inevitable question, “What is it like for you to live with Kate and Parkinson’s Disease (PD) for the past eleven past years?”

We attended the screening of “Shaken,” a documentary about PD on Tuesday in Boulder. For the first time ever, Tom and I were on a panel with people living with PD and their spouses, children, and parents.

I was a little nervous about what Tom might say about living with me and PD. I was worried that he might have years of resentment built up that might come spewing out in front of these Boulder strangers.

No need to worry. Tom learned about compassion early in life when sharing a bedroom with a developmentally disabled brother while growing up. He always has been a caregiver.

Tom’s frustrations were similar to mine. He hated the unpredictability of this awful disease, as one minute I seemed to be functioning well and we were going to karaoke, while the next, I moved slowly, slurred my words and could hardly talk much less sing.

Tom mourned the loss of our pre-PD levels of activity with week long bicycle trips in California, Vermont and Wisconsin and running ten-milers in the Canadian Rockies and along the California coast.

Tom expressed his pride that I continued working as coordinator of hospital volunteers until the bittersweet end, and that I was carving out a new life for myself being on permanent medical disability.

I am not the same person that Tom married 32 years ago. PD has impacted me, Tom and our relationship.

We were touched that someone had the courage to ask.