Check out Healthline's The Effects of Depression on the Body at:
Up to 60% of those with Parkinson’s Disease (PD) will experience depression in their lifetime. Yet even with the high rate of occurrence of depression, there are a number of people with PD whose symptoms go undetected and untreated.
It's the old “chicken and egg” question “Does the depression cause PD" or "does PD cause depression?"
PD symptoms can overlap with depression symptoms such as in insomnia, slow movements, poor concentration, and fatigue.
The stigma of depression and not wanting to appear weak often prevent people from seeking treatment. Treatment for depression often includes psychotherapy and/or anti-depressants.
While treatment will not eliminate the PD symptoms, these problems may appear to be more manageable and treatment may provide you with the confidence that while you are not in charge of these symptoms, you are in charge of your attitude and reaction toward them.
Today, February 3, is Saint Blaise's feast day, which in Catholic tradition, includes the Blessing of the Throats. Saint Blaise’s protection of those with throat troubles comes from a legend that a boy was brought to him who had a fishbone stuck in his throat. The boy was about to die when Saint Blaise healed him. Saint Blaise is also the patron saint of wild animals because of his care for them and of those with throat maladies. Since voice and swallowing problems are common symptoms of Parkinson’s, we thought we’d take today to share our insights.
Kate Kelsall, blogger, Shake, Rattle, and Roll and Mary Spremulli, blogger, voiceaerobicsdvd.blogspot, began a correspondence in 2008 that evolved into a deep friendship. Kate has been living with Parkinson's for over 18 years, and in her blog posts shares her trials and triumphs, along with current information that can help others manage their disease and manage their lives. Mary has been a medical speech-language pathologist for 30 years, and her blog posts include information about available speech and swallowing treatments for persons with Parkinson’s and other neurological diseases. She also frequently discusses the concerns of patients and their families that arise in her day to day private practice.
A message from Kate and Mary:
Today, in our shared posts we respond to each other’s questions, and invite you to follow our blogs. We hope the information we provide offers support to others living with Parkinson’s and some guidance for improving or maintaining Your Great Voice and spirit!
Kate and Mary
Kate asks Mary
1. What are the most typical speech and voice problems of those with Parkinson's?
The most “typical” are probably low volume (hypophonia), and along with that a change in perception. Meaning, voice has gotten softer, but to the individual feels normal, and a request to be louder is often met with resistance or a comment such as “that feels like I’m shouting.”
Some people also experience a change in speech rate, and, in particular, I have noticed this problem for some people post DBS. It's what I refer to as "run-away speech," meaning, despite what the individual tries to do, it feels impossible for them to slow down their rate.
This past year, I’ve seen a lot of patients with cognitive-linguistic decline as their major symptom, and this can include: word finding problems, reduced attention and concentration, and reduced memory. If you combine these problems with soft voice, conversational speech becomes a real challenge, and many people start to withdraw from social interactions.
2. Do you use the same treatment methods for all of your patients with Parkinson's? Is it a one-size-fits-all program?
I, personally, do not believe that therapy is a “one size fits all.” Clinicians need to be familiar with current scientific evidence and treatment recommendations for specific problems, but they also need to regard patient preferences, values and beliefs in treatment planning, and that is the art of medicine. When my mom was undergoing physical therapy following a stroke, the PT wanted her to do Tai Chi for balance. My mom had NO interest in going to Tai Chi, instead, all she talked about was going back to bowling, which was an activity she participated in prior to her stroke.
In planning treatment I also need to consider the type of support someone has at home, and more and more their health care benefits. If someone has a $50 co-pay for every speech therapy visit, they will self-limit their sessions, so, I have to be creative in thinking about how I can give them the most treatment in the least amount of visits. Home-based practice is ALWAYS a large component of treatment.
3. Would you describe some of your most challenging patients and how you have worked with them?
Well, I have always had a certain affinity for “challenging” patients. Either they seek me out or I attract them to me. At the moment, I have a gentleman who was in his usual state of health, which included well managed PD, when he underwent an elective neck surgery. He developed complications post operatively, which included swallowing problems, and received a feeding tube. When he came to me, he hadn’t eaten in over a year, and was basically told by another therapist that he probably never would. I have had a few similar patients, so I was cautiously optimistic that we could get him eating again, and so far so good. These are challenging patients, because, while they have a desire to eat, they have lost the normal drive to eat, and also a decline in muscle function, so I have to be somewhat aggressive while at the same time, careful not to compromise their safety.
The other “challenging” patients are those who are experiencing a more rapid decline due to the nature of their disease, and these are often the Parkinson plus patients. When providing treatment and home programs, it feels as if you are trying to stay two steps ahead of the disease. By this I mean, the disease is in the background, and often, in an insidious way is changing speech and/or swallowing function. I try to emphasize to patients that if they choose not to perform the exercises or employ the strategies that have been recommended, the disease process may get the upper hand. Swallowing decline for these patients is often a big issue, and eventually benefits v/s risks of feeding tubes must be discussed.
4. Why does it seem so difficult for those with Parkinson's to maintain their speech and voice improvements after therapy?
Well, some patients do retain improvements following speech treatment, at least for a period of time, particularly if they’ve undergone an intensive program like LSVT®. But even LSVT® is exercise, and so, eventually, if an individual stops doing the home practice, it’s likely they will experience a de-training effect, and a gradual voice decline. Remember, voice changes don’t happen because someone is being lazy, or just not trying hard enough; they come about because of the disease in the background changing the way muscles are working. So, to some extent, if someone hopes to retain improvements made in speech and physical therapy, they need to continue some level of home practice for the duration. Group classes and after therapy programs can be a tremendous asset in this regard. Not only do they provide a fun atmosphere to exercise, but, you just have to show up, and the instructor will guide you through the paces.
5. What are some of the psychological issues that people with Parkinson's face when they are struggling to speak and be heard and understood?
Well, Kate, you probably have the answer to this question, because I know that from time to time even you have struggled with adequate voice loudness. The comments I hear most often from patients is that they are “starting to withdraw,” or “people are passing me by.” Conversational speech is fast, and full of interruptions and distractions. If your thinking has become a little slower, you’re processing what other people say a little slower, and you can’t count on your voice being loud enough when you finally decide to speak, it’s a set-up for disaster. Rather than worrying about all of that, some people just make the decision, consciously or unconsciously, to speak less. I think the real loss in these situations is for the spouse and other family members. I don’t want to sound sexist, but it is true, that we women connect through communication, and if someone’s husband no longer speaks much, it can leave their wife feeling quite lonely or emotionally abandoned. My dad, who was the consummate extrovert and a Mayor for 42 years, began to talk less and less in his final years with Parkinsonism. I would give everything I own to hear my dad’s voice on the phone. It is really such an important part of our human connection.
6. What do you foresee in the future for people with Parkinson's in terms of the treatment of their speech and voice problems?
Well, gazing into my crystal ball, I see lots more apps and device interventions, which will give individuals more control over the choice of what they find helps them. There are already apps which are available for home practice, like “Speak Up For Parkinson’s,” apps which can be used to facilitate improved loudness or normalize rate, like “iParkinson”, and there are also already device interventions available like Speech Vive™ and Speech Easy®. Telerehabilitation and telemedicine is also going to be more prominent in the future. I have offered some online coaching using the internet, and it is really a great way to deliver some speech and voice treatment. Even my 80 year old patients have computers and smart phones, so, the possibilities are almost limitless, as long as people realize that the technology and the devices are just the mode of delivery, and hopefully, they will never replace the human interaction between patient and therapist.
7. What do you mean about a prayer to St. Blaise? Is there some spiritual component to the therapy process?
I thought the legend about St. Blaise would be a fun way to highlight the importance of all that is involved with the throat, and that includes: every breath, our speech, voice, and swallowing. I don’t want to try to define what “spiritual” means to other people, but, for me, yes, having the opportunity to step into another person’s life, even briefly, as a member of the healing arts, does feel like a “spiritual” connection. The relationship I form with a patient is sometimes intense, and requires a lot of mutual sharing and trust. What greater honor could someone bestow on me, than to “trust” me with some aspect of their health and their being? So, yes, Kate, I think there can be a spiritual component to the therapy process, particularly if we use it, patient and therapist, as a vehicle for finding greater meaning or purpose in our lives.
To View Mary’s questions for Kate and Kate’s responses, please visit:
It was a warm day in May 2005 in Sacramento, I felt as though I was the only person in the world getting DBS. My husband, Tom felt like he was the only spouse in the world of someone getting DBS.
Tom and I each kept our worries about DBS to ourselves—how would I function after DBS; would I survive the surgery.
Back in 1996 on the day after I was diagnosed with Parkinson’s, Tom and I went to a local PD support group whose members were identified as “young onset.” At the time, I didn’t know the difference between the terms “young onset” and “recently diagnosed” and I thought they were one and the same. This young onset group had many people that were in their70s and 80s and had advanced Parkinson’s, I was 46 years old and was diagnosed only the day before. Members arrived in wheelchairs, using walkers, and one individual even arrived by ambulance. It was a shock to see a possible glimpse of my future with Parkinson’s. I never attended another PD support group for the next ten years from 1996 to 2006 until Valerie Graham and I founded the DBS support group, the Bionic Brigade in 2006.
We both learned that we were not alone and that support groups aren’t one size fits all.
I learned the questions to ask.
During the DBS process, I realized that I needed to meet with other persons who already had DBS. I saw plenty of DBS medical folks during the evaluation process, but no one who had the experience of being a patient who had DBS.
I learned everything I could about DBS.
Some group members like to know every detail about the DBS experience, while some feel intense anxiety with too many details.
I learned to speak up.
I love the saying “A closed mouth doesn’t get fed.” I needed to open my mouth and ask my questions. If I have a question about DBS, chances are there are a number of other members who have the same question. Even if you I’m not the kind of person who enjoys speaking up, it’s important to share my DBS experience in the group so that others can benefit from my experience and knowledge.
I learned to be respectful.
I have the utmost respect for people struggling with PD and DBS and their care partners, overwhelmed by the doctors’ appointments, keeping up with the programming sessions as well as the rehab sessions in speech, physical and occupational therapy. Those with PD don’t want to be pitied or to be seen as suffering, but they want to be treated like ordinary people who are making their way in the world and living the best they can.The Bionic Brigade continues to be an excellent resource for information about DBS, provides the opportunity to share DBS experiences, explore fears about DBS and make some friends along the way. The group with its co-leaders, Donna Miller and myself (both with PD) and its enthusiastic facilitator, Cheryl Siefert (who does not have PD) have shown that our lives are not over with DBS. In fact, in some ways we have created more satisfying and purposeful lives with DBS. The group has provided education and support, and we have come to the conclusion that we are not alone in our quest for the cure. The Bionic Brigade has given us inspiration and hope for the future.
“My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations.” Michael J. Fox
For many people with Deep Brain Stimulation (DBS), their lives have turned out for the better with the miracle of DBS.
Successful DBS is often related to realistic expectations. When I had DBS in 2005, I didn’t remember much talk about goals or expectations for DBS surgery. However, I do recall the gratitude that I experienced in being accepted for this potentially life-changing surgery.
After DBS, I wanted to feel like I did BEFORE I was diagnosed with Parkinson’s Disease (PD)—so full of life and naively thinking that I was invincible. I hadn’t analyzed my expectations in terms of gait, balance, tremor, stiffness or shakiness. I just wanted to feel better.
So, what’s not to expect?
After nine long years I have finally come to grips with what DBS can and cannot do. These are my lessons learned.
1. Don’t expect DBS to be a cure for PD. There is currently no cure for PD, and it continues to be a progressive and chronic disease.
2. Don’t expect DBS to prevent the progression of PD.
3. Don’t expect that you will qualify to be a DBS candidate. If it happens that you do qualify, be appreciative that you have an additional option to consider for your treatment.
4. Don’t expect that one DBS programming session is all that you require. It frequently can take up to six months or more for optimum programming and adjustment of your medication.
5. Don’t expect that DBS can relieve ALL of your motor symptoms such as tremor, dyskinesia, dystonia and rigidity ALL of the time. But do expect DBS to manage SOME of these symptoms SOME of the time.
6. Don’t expect that DBS to be a treatment for your non-motor symptoms of PD such as speech and swallowing problems. These problems in addition to gait difficulties sometimes worsen as a result of DBS.
7. Don’t expect that after DBS you will be functioning as an athlete, when in reality, you are living more like a couch potato. For example, if you haven’t run a marathon before DBS, don’t expect to run one after DBS.
I’m not saying that you have to lower your expectations, but it’s important that you at least clarify these expectations and those of your spouse, family, and DBS team. You need to discover the similarities and differences in expectations and have some consensus among these expectations.
Once identifying your expectations of DBS and determining if they are realistic, you must accept the potential benefits and drawbacks of DBS and that whatever results you experience from DBS, that you will have the courage and strength to handle it.
More than 10 million people worldwide, including Google co-founder Sergey Brin's mother, have Essential Tremor or Parkinson's Disease. Although those with Parkinson’s Disease often experience a resting tremor while at rest, those with Essential Tremor frequently have a tremor while in action. Lift Labs has joined Google in creating a product for those of us who are struggling to eat with a hand tremor.
After living with Parkinson's for 18 years, I sometimes experience the embarrassment and frustration of trying to feed myself in public. With an unsteady right hand, I try to maneuver my food on to my fork or spoon. Some foods such as grapes are slippery when trying to get them positioned on my spoon. With my food loaded on my utensil, my food sometimes misses my mouth and lands on the table or the floor. I never leave home without “Tide to Go” (an instant stain remover) to use when my food lands on my clothes.
I usually ask for a larger plate when I’m at a restaurant. I don’t want a bigger quantity of food, I just want extra loading space so that I can retrieve the food off of my plate and improve my chances of it arriving at the correct destination.
Once I have my food up to my mouth, I have concerns about swallowing properly, and that the food “goes down the right pipe” and that I don’t choke on it. It’s a lot to worry about. But that’s another story.
When I leave the restaurant, I notice that it looks like a preschooler has had a meal at my table, not a senior.
Sometimes it’s just not worth all of the effort required to eat, and I skip a meal. It helps if my medication is working properly, and my tremors are less.
The Liftware Spoon may alleviate some of my food-feeding anxieties. Retailing for around a “mere $300,” it also has a fork attachment. It allows people with Essential Tremor and Parkinson Disease to eat without spilling. The technology senses how a hand is shaking and makes instant adjustments to stay balanced. In clinical trials the Liftware Spoon reduced shaking of the spoon bowl by an average of 76%.
Granted the Liftware Spoon is not a cure for Parkinson’s Disease or Essential Tremor, but it certainly has potential to make my life a little easier, more normal, and it allows me to live a more independent and productive life.
No Data to Support Asleep DBA is As Safe and Effective As Awake DBS
By Sierra Farris, MA, MPAS, PA-C
Reprinted with permission of the author
In an age when patients demand solid evidence for any conventional therapy, DBS performed while under general anesthesia (asleep) has escaped the critical appraisal of the evidence from the patient community, referring physicians and hospital systems. This post addresses a local movement in DBS that has gained momentum from intensive direct to patient marketing. Patients are provided a compelling one-sided view without the scientific evidence and the results have varied significantly when compared to standard DBS practices.
The questions which we do not have answers but need to be asked:
11. Should community hospitals allow a new surgical technique to be adopted and marketed that is off-label (not approved by the FDA)?
The FDA has approved DBS to be implanted while awake when neurological testing confirms benefit without intolerable side effects. DBS is just like any medical therapy that must undergo extensive safety and efficacy testing before offering to patients. Without the research to gain FDA approval, asleep DBS is considered experimental. DBS is invasive brain surgery that can have serious complications. However, patients are signing up for this experimental brain surgery technique without the medical evidence or FDA oversight. The bottom line: asleep DBS has not met this basic standard of critical analysis by the medical community or the FDA to protect patients from false claims or required reporting of results and complications.
How is awake DBS different from asleep DBS?
The FDA has based approval for DBS on the extensive research performed while awake. The “awake part” involves waking the patient and testing the stimulation during the surgery. This provides the medical team and the patient with immediate indicators that the DBS probe is in a position to provide symptom improvement without intolerable side effects. When a person’s brain physiology is a little different, the probe placement can be customized to fit each individual during surgery. This gives the patient and the medical team the highest confidence that DBS should work when the stimulation is turned on in the clinic. Patients are only awake long enough to do the exam testing. There is little to no pain involved and the patient provides highly valuable feedback while stimulation is being tested in the operating room. Awake DBS requires expertise and collaboration from the neurology and surgical clinician that the DBS probe is in the best position in the brain to offer the greatest result without side effects. Awake DBS does not require general anesthesia as the patient is given an intravenous sedative.
Asleep DBS requires less time from the surgeon; eliminates the need for neurology expertise and collaboration during the surgery; requires high resolution MRI scanning services for the lowest error in targeting; eliminates the need for equipment to map the brain target. Asleep DBS requires the patient to be under general anesthesia.
Will asleep DBS be the way of the future?
Asleep DBS has been done for many years when patients cannot be awake due to safety (ie: severe dystonia). Fortunately, university DBS teams are in the process of studying the technique of placing the probe while the patient is under general anesthesia using high resolution MRI. These teams must prove that routinely using a new technique to place the DBS probe without testing is at least as good as our standard in DBS surgery. These teams are using MRI guided targeting by highly skilled neurosurgeons that have experienced teams to evaluate the immediate and long-term results.
Imaging may be the defining factor for great (or poor) results.
In DBS, millimeters matter substantially. For instance, a two millimeter deviation of the stimulation can mean the different between excellent, mediocre or poor results as well as intolerable side effects. DBS centers that strive for the greatest results will prefer high resolution MRI. Targeting using a CT scan has much more inherent error than using a MRI to guide probe placement and patients should be given this disclaimer that imaging techniques incur errors that may impact the actual probe placement. As of yet, there is no imaging technique that is without some degree of error with CT being the least accurate to visualize brain structures.
Does physiology matter with DBS?
The answer depends on who you ask. How the brain behaves is called physiology. When applying stimulation, we expect a specific behavior – improvement in certain symptoms. DBS success is founded on stimulating a specific area in the brain that is located while testing the brain. Assessing brain physiology requires expertise and experience and is a much more sophisticated task than identifying brain structures on MRI. Whether physiology (obtained during awake testing) is critical to results is unknown but does provide substantially more information about the uniqueness of a person’s brain and behavior during stimulation. We do not know if visualizing a spot within a brain structure is equal to that areas ultimate behavior when stimulated.
Why rush an unproven surgical technique before the research is done?
Novel techniques are generally spearheaded by highly respected researchers that have experience and teams to do the work necessary to prove a new technique is appropriate to use on patients. Promoting a new technique can increase the number of surgeries performed; produce enticing marketing claims; personal gain, beat the competition, satisfy quotas...
Why bother to speak up?
The emergent concern for asleep DBS is the unchecked impact on people with Parkinson’s and open yet blind acceptance for an experimental brain surgery. There may be testimonials that asleep DBS worked yet personal stories do not meet the evidence we should demand when sending patients to brain surgery. In my experience, patients that have poor results from DBS are less likely to seek help and become isolated or even embarrassed that DBS didn't work. People with Parkinson’s have a life-time of symptoms to deal with and deserve more than unproven marketing claims. The risk of mediocre DBS is not justified when there is an alternative proven technique that offers a long track record of success. Until the research is done and the long-term results are known, the procedure is experimental and there is presently no comparative data to debate. One area of clinic debate is whether to skip the research step and offer asleep DBS when the person down the street is intensely promoting it as the latest and greatest technique. From my perspective, the interest of the patient supersedes adopting an experimental technique that has a proven alternative. The debate should be whether asleep DBS brain surgery should be allowed to continue in the absence of the research and oversight that other medical procedures endure.
A patient's spouse asked recently why take the risk of speaking out. Although it is not without professional consequences to persist in speaking out against the funding support, marketing and adoption of a technique in my community, my perseverance is fueled by my alarming experience thus far with self-referred patients and the struggle to improve their poor and in some cases devastating results after asleep DBS - people with Parkinson's need to know.
About the Author:
Sierra Farris is a board certified physician assistant specialized in movement disorders and deep brain stimulation. Ms. Farris has significant experience with all aspects of DBS therapy including a special interest in DBS research and investigating DBS problems. Ms. Farris is co-owner and Director of DBS Services at the Movement & Neuroperformance Center located in Englewood Colorado. Sierra works alongside Dr. Monique Giroux and assists in neurosurgery during DBS surgery performed at Swedish Hospital in Englewood Colorado. (www.centerformovement.org) Ms. Farris is an author, researcher, bioethicist, physician assistant, teacher and mountaineer. Sierra's experience in DBS since 2000 puts her at the top of her field as an expert in deep brain stimulation therapy.
I’m hungry for a vegetarian pizza for dinner. I order online. I am grateful that I don’t have to talk to a person to order my pizza. The printer spits out my order confirmation indicating that my pizza will be ready in 18 minutes.
In the past when I’ve tried to order pizza by phone, the pizza clerk didn't hear or understand me. She repeatedly shouted, “Ma’am, you’ll have to speak up” in a voice that is filled with frustration and annoyance. The pizza clerk hangs up the phone on me. I feel defeated and hungry, and with all that effort. there is still no pizza.
But several months later, when I ordered a pizza by phone, I had a very different experience. I was now able to speak, and my voice was frequently strong enough to be heard. I decide to drive over and pick up the pizza in person. I use my driving time to and from the pizza place to practice the voice and speech exercises from Mary Spremulli’s Voice Aerobics CD. It's a fun way to strengthen my voice and improve my speech skills, and it feels like I’m getting my own individual voice session with Mary. Also, it takes only 22 minutes to complete, and most of the places that I drive to take less than 22 minutes of driving.
I arrive at the pizza place and am greeted by a red-haired, twinkly-eyed man who looks vaguely familiar. He had a name badge that says “Hi, My name is Gary.” He’s the kind of guy who has 1000 friends on Facebook but has met only a few of them in person.
The mostly one-sided exchange went like this:
Pizza Guy: (looking surprised) “I haven’t seen you for a long time.”
Me I wanted to say but didn’t “I am confused that you are keeping track of me when I don’t even know you.”)
Pizza Guy: “Your husband said that you are going through a bit of a rough patch.” and that you have problems with your voice due to Parkinson’s and the surgeries.
Me: I considered saying, but didn’t “How do you know my husband?” but then I remembered that my husband picked up a pizza for our evening meal a couple of weeks ago, and Gary must have introduced himself.
If Gary was a true fiend and if the long line in the pizza place wasn’t filled with hungry customers waiting to be served, I might have expressed myself as follows:
“Rough patch.” That’s an understatement. I’ve had too many rough patches along my Parkinson’s path for the last 18 years and Deep Brain Stimulation for the past 9 years. The major rough patch was the loss of my voice and I am delighted to say, the recent recovery of a new and different voice (which I will write about in more detail in another article).
In the last couple of years, I’ve been bombarded by the illnesses and deaths of many family members and loved ones. I’ve been consumed by the sorrow of losing too many people, too soon and before their time. Too much tragedy for one family to endure.
Yes, I’ve lived through the previous rough patches. I’ve sanded some of the rough patches into smooth patches, and I’m beginning to heal and recover. Life is full of rough patches to conquer.
Voice Aerobics Talking 2 You
Friday, October 3, 2014 at 12 pm (noon) to 1 PM EST podcast
Neuropsychologist, Dr. Howard Kalter will help us figure it out
Message from Mary Spremulli, MA,CCC-SLP, Owner, Voice Aerobics, LLC
Hi, everyone, I am excited for my interview this month with Dr. Howard Kalter. The issue of driving is one that even my family has had to discuss. Maybe your parent, spouse, or friend doesn't seem safe for driving anymore because of a physical or cognitive disability, but Who Decides to Take Away the Car Keys?
My guest, Dr Howard Kalter, Neuropsychologist, and Owner of Brain Function Clinic and Psychological Services, Southwest Florida will help us figure it out.
Dr. Kalter has been a practicing psychologist for over 25 years, and he and his staff work with a diverse population which includes: adults and seniors with dementia, neurodegenerative diseases such as Parkinson’s and PSP, and those who have suffered a stroke, TBI or other neurological injury.
Dr. Kalter frequently performs capacity assessments, including a state of the art Cognitive Behavioral Driving Inventory.
Have a question for Dr. Kalter??
As always, YOU can join the discussion by calling in on the toll free number during the show: (888)787-5265) or SKYPE
Send an email to: email@example.com or
Send a tweet: @voiceaerobics#driving
Visit the show page:
Learn more about Voice Aerobics DVD, Online Coaching and the whole Voice Aerobics family of products:
Review of Book: Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia
Author: Kirk Hall
Reviewed by: Kate Kelsall, Co-Founder and President of DBS Voices of the Rockies, Co-Founder and Co-Leader of the Bionic Brigade DBS Support Group, Blogger of Shake, Rattle and Roll
Initially I was apprehensive about reading the book, Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia by Kirk Hall. I was afraid that the book was going to focus on the uncertainty and threat of dementia that sometimes accompanies Parkinson’s. I was delighted to see that there is no gloom and doom in this book.
Kirk was courageous to tackle these sensitive topics. When he expressed his fears, it helped us to articulate and accept our own concerns and worries. We are no longer alone on this treacherous path.
Kirk’s writing style is personal and honest like a memoir, and also filled with factual information and stories about Parkinson’s and dementia. He is determined to erase the stigmas of these two diseases in our society.
Kirk demonstrates that we can have a meaningful, purposeful life, despite Parkinson’s, dementia or whatever maladies come our way. His book was inspirational and motivated me to move upward and onward. I highly recommend it.
Available at amazon.com and and pygmybooks.com
By Kate Kelsall
Everybody's got a secret, Sonny
Something they just can't face
Some folks spend their whole lives trying to keep it
They carry it with them every step that they take
'Till some day they just cut it loose
Cut it loose or let it drag 'em down ...
From: Darkness on the Edge of Town by Bruce Springsteen
When I learned this week that Robin Williams committed suicide, I was devastated by the news. I also learned that he had Parkinson’s Disease (PD) as well as the depression and anxiety that often comes with the territory of this progressive, chronic condition.
I can relate to Robin’s story. I am currently 64 years old, one year older than Robin. When I was diagnosed with PD 18 years ago at the age of 46, at first I only told my husband, mother, and brothers and sisters. Throughout the years, I gradually told a few more relatives, close friends and colleagues.
I was ashamed of having PD as though it was my fault that I was diagnosed with this malady. I didn’t want to be pitied, judged or others to lower their expectations of me. I dreaded that people might scrutinize me and look for my worsening PD symptoms.
I scheduled my neurology appointments at 7:30 AM so that I could avoid the other shaky folks in the waiting room. When my hand shook at work, I would put it in my pocket. When people would ask me about my medical condition, my typical response was frequently "I don't want to talk about it."
I was arrogant enough to think I could cure PD by maintaining a healthy lifestyle, taking my PD medication, and developing a positive mental outlook.
When my PD meds were working, denial was my motto. When I often passed as healthy, or so I thought, my magical thinking went like this: If I don’t talk and think about PD, then I don’t really have it. So I pretended.
The problem with denial was that it also required secrecy. For nearly a decade, I kept my PD shrouded in secrecy.
During these early years while keeping my secret of PD. I insulted others by not sharing what it was really like to live with PD. I deprived people of the opportunity to provide support, and I deprived myself the opportunity to provide inspiration.
By the time that my PD had progressed to the point that I required Deep Brain Stimulation (DBS) surgery, I found it necessary to disclose what I could no longer conceal. Concealment had become as stressful as the disease itself. It was time to come clean and get honest.
When PD was no longer a taboo subject for me, “reveal instead of conceal” became my new motto. And what a relief it has been for me to live a life of openness without secrets.
Robin’s fears prevented him from sharing his secret of PD to the public. I contemplated this question: If Robin had chosen to reveal and not conceal his condition to the public, would he still be alive today? If he shared his secret in life, I believe he would have received the same overwhelming support that he received in death. And he might have realized that he was not alone and with his support and resources, he could make a difference in the lives of those with PD and their families, including himself.
Keeping Parkinson's Disease a Secret at:
The Best Parkinson's Blogs of 2014 by Healthline
“Kate Kelsall is a jazz-loving accordionist who lives with her husband of 40 years and a rescue dog named Rusty. She was diagnosed 18 years ago and had Deep Brain Stimulation surgery for Parkinson's disease 9 years ago. Kelsall shares her personal experiences in an engaging and witty tone on her blog at Shake, Rattle and Roll. The blog contains an interesting mix of posts that are always educational.”
Yesterday was a great day. I've had so few great days lately with Parkinson’s that I’m excited to share my positive experience.
I take Broadway dance classes and perform with a group called the Rockyettes. One of the dances that we are learning to perform is our version of John Travolta’s dance to Stayin’ Alive. While I know many of the dance steps, I am struggling to learn the sequence of these steps. So instead of dancing from the beginning to the end, I broke up the dance into five segments and tried to learn the dance in a different manner, e.g., in a. different order (e.g., segment 3, 5, 1, 4, 2) and with different cues for transitions and dance sequences.
Observing our group having trouble learning this dance and considering that we were performing it the next day, Ann, the dance instructor, offered to dance with our group to Stayin' Alive. We happily agreed to take her up on her offer. It gave us the confidence that we needed to learn the dance well before performing it on our own.
Ann had encouraged the dancers to smile while performing. The dancers provided all kinds of excuses on why it was impossible—“I can't multi-task” or “I can't think about my current dance step, my next dance step and smile all at the same time” or "I'm not a smiley kind of gal.” But during this performance, we miraculously cued ourselves by smiling to each other and the audience. Smiling became contagious.
And the best part of the day was that my voice worked almost all day. I was able to communicate with the dancers and talk to members of the audience after our performance. I had glimpses of my former self before Parkinson’s when I enjoyed talking and didn’t have to struggle to be heard or understood.
One of the dancers is a newbie to our group and found it challenging to learn the new dances. When I had observed tremendous improvement in her learning of the new dances, I told her that it was obvious she was working hard at it. She thanked me and hugged me, likely because I had noticed.
Lessons I Learned:
A great day doesn’t have to be a perfect day. In the past, if I had a great day for most of the day, but I had one setback, I would discount all the good aspects and call it a bad day, For example, during my last dance at the performance, my right hand started tremoring. In the past I would have been mortified, tried to cover it up, and said it was a terrible day. However, when my right hand shook at a recent performance, I tried to accept it and refocused on my dancing.
It is important that I verbalize supportive thoughts and observations instead of keeping them to myself. A few honest words of encouragement can brighten someone’s day.
It is necessary for me to analyze the components of a great day so that I can continue to create more of them. Despite having Parkinson’s Disease for 18 years, I can have a great day if it includes dancing, communicating and interacting with others and being creative. I’m looking forward to making many more great days, weeks, months and years.
Make it a great day.
Rockyettes Group Photo--2014
(I'm in the 2nd row at the 1st position on the far left).
Roxann Diez Gross, Mary Spremulli and Debbie Tarakofsky have a lot in common. All three women are speech-language pathologists. They have dedicated their careers to helping those with Parkinson’s who have difficulty swallowing. They are passionate about preventing aspiration pneumonia, the most common cause of death in those with Parkinson’s.
To learn more, check out the following:
Speech pathologists improve quality of life for Parkinson's patients
The doctor was referring to me as being a Health Trooper, not a state, military or police trooper. He was referring to my determination in managing my life with 18 years of Parkinson’s Disease (PD) and 9 years of Deep Brain Stimulation (DBS).
What the doctor didn’t know was that I was on the verge of returning my Health Trooper badge and replacing it with an Ordinary Human Being one.
The Urban Dictionary defines trooper as “anyone who exhibits EXTREME perseverance, fortitude, and tenacity.” It’s the extreme part that worries me. Anything that’s extreme can’t be good for my health. “Everything in moderation” has been my motto.
I have felt a lot of pressure and stress in assuming my role of Trooper.
Being a Trooper involves being a model person with PD and a poster child for DBS.
Being a Trooper means that when someone asks how I’m doing, my response is always “Great!” (but I fail to mention the occasional tremors and the more frequent stiffness).
Being a Trooper refers to refusing to surrender to PD and claiming that “I have PD, but it doesn’t have me.”
Being a Trooper entails focusing on the positives and insisting that my quality of life has sky-rocketed since DBS.
Being a Trooper entails minimizing the negatives of PD, saying that I’m a “better person” for having it. However, I can’t quite reach the point of calling PD a “blessing” or a “gift” or that I’m “lucky” to have it.
Being a Trooper is having 91 speech and voice therapy sessions, and still not being heard or understood.
Being a Trooper means that even after problems with DBS and programming, I’d still be willing to do it all over again if required.
Turning in my Trooper badge and exchanging it for an Ordinary Human Being badge would make me just like everyone else, with good days and bad days with PD. I’d be more honest. I’d be able to say that some days I hate having PD. I’d be open with others about my struggles and even use my previously forbidden word, “suffering” when describing my experience with PD. I’d sleep more soundly at night and take a nap during the day if I felt like it. I would stop pretending that I have all the answers and control over this condition. I’d be better at saying “no” when asked to assume further PD-related responsibilities. I’d be dancing more and taking life less seriously.
I look forward to earning my new badge os an Ordinary Human Being.
“People may not remember what you said or what you did but they will remember how you made them feel.” Maya Angelou
Effective couple communication is the foundation of a strong marriage. Parkinson’s Disease (PD) can compromise a couple’s ability to communicate. The following couple communication strategies can help you maintain or even enhance your relationship.
Listening and Speaking
Communication involves listening and speaking.
To listen more effectively:
EXAMPLE: I ask my husband, Tom, “Will you pick up a pizza for dinner on your way home from work?” His response is “Did you say that you want me to pick up something for dinner on my way home from work?” and I respond with, “Yes, a pizza.” This interaction shows that my husband heard and understood most of my message and that he tried to clarify it.
Environment for Communication
Body Language and Non-Verbal Communications
Communication can be hampered by the PD facial mask (and I don't mean the kind that you get at the beauty spa). This occurs when persons with PD have less facial expression and their faces communicate less emotional meaning to their listeners. Often their faces appear angry, stern or flat, in contrast to what they are feeling inside. Persons with PD might think they are showing and expressing happiness, yet because of their PD, have a masked face and a lack of expression, so that their emotions can no longer be read by their loved ones.
EXAMPLE: A husband of a woman with PD frequently asks her “Are you mad at me?” when in reality she was feeling very satisfied and content.
Respectful communication also entails for you to:
EXAMPLE: I overheard two wives complain about the poor posture of their husbands with PD. Their husbands, sitting nearby, winced when being criticized in this manner, particularly since they likely perceived there was little they could do to improve their posture.
EXAMPLE: When we were on vacation visiting friends that we hadn’t seen for many years, the couple whispered to my husband, Tom, and asked how I was REALLY doing with PD. Tom response was, “Why don’t you ask Kate? She’s right over there,” pointing to me only a few feet away (Yeah, Tom)
EXAMPLE: I have experienced people talking to me very loudly assuming that if I talk quietly, that I also must be deaf or stupid. Don’t assume that because I have a quiet PD voice that I also have a hearing problem or that I don’t understand. My hearing is just fine, thank you very much, and my cognitive abilities are fully intact.
In a group setting, often persons with PD feel left out or isolated Their voices are quiet, they can have difficulty hearing or understanding what others are saying, they might have trouble formulating their thoughts and keeping up with the pace of the discussion and adding their comments on a timely basis, they often have problems with finding the right word and sometimes have difficulty interpreting and responding to the non-verbal aspects of the discussion.
When you attempt to communicate within a group environment, it is important to develop verbal and non-verbal signals that indicate when you want others to help and when you want to communicate on your own. For example, signals might include the following:
A nod to your partner might indicate “yes, I want your help and please speak on my behalf.”
An index finger up or a palm facing out might indicate “please give me a minute to collect my thoughts.”
A person verbalizing “let me try saying that again” wants an opportunity to restate his communication so that it’s clear.
In conclusion, patience is required in the communication of couples where PD is part of the relationship. Acceptance of these communication changes, developing strategies, and taking action is important in maintaining a strong couple relationship.
You Won’t Want to Miss This Podcast
A Message from Mary Spremulli from Voice Aerobics:
On Friday, February 28, 2014 at 12:30 PM EST, Dr Paul Short, a neuropsychologist, and the "Parkinson's Coach," will be my guest on: Voice Aerobics Talking 2 You, my monthly podcast at http://www.blogtalkradio.com/voice-aerobics.
I encourage you to call in to the show to speak with me, the host of the show, and Dr Short about the issues that challenge you or your partner's relationship since receiving a diagnosis of Parkinson's Disease.
If you are a spouse of a persons with Parkinson's responsible for therapy appointments, medication regimens, and doctor's appointments, you may feel that you are always on the edge, and find yourself saying: “I miss the relationship that we used to have. Sometimes I feel more like a parent than a spouse.” If this sounds or feels familiar, and you long to discover the "possibilities" still present in your relationship, I invite you to call in to speak with Dr Paul, or send me an email with your questions or concern to: firstname.lastname@example.org.
If you are a therapist, nurse, or other health care professional, I hope that will also join the conversation and learn how to support your patients and their partners in living well with Parkinson's Disease.
For further information, please send me an email to: email@example.com.
I’m not afraid of brain surgery and have no fear of flying or dying. However, I'm terrified of the phone. I dread making phone calls, returning phone calls, leaving voice mail messages, putting a voice mail greeting on my phone, and the ringing of the phone results in fearful anticipation. I can spend hours or days of avoidance and rumination before making a call. I have a phone phobia.
Before I call someone, I get an ache in my chest, my breathing becomes shallow, I experience a tightness in my stomach, my mouth becomes dry, and I often pace. I stare at the phone frozen with fear while trying to summon the courage to call, and delay dialing for as long as possible. I mentally rehearse what I would like to say.
I usually will only answer the phone if the caller ID says it’s my husband, family or close friends.
In contrast to using the phone, I feel totally comfortable when meeting people in person.
The origin of this problem seemed to be when I was diagnosed with Parkinson’s Disease more than 17 years ago. One of my first Parkinson’s symptoms was my soft, raspy and hoarse voice. When I talk to people on the phone, they often say that they can’t hear or understand me. Some even hang up on me thinking I am a crank caller. Despite more than 75 speech and voice sessions and three vocal cord surgeries, my voice problem persists.
I’ve coped by avoiding the phone altogether or asking my husband to respond to the phone calls. I communicate primarily by email.
Jim McClure, a kindred phone phobic, developed some strategies to deal with his fear of the phone due to his stuttering. Check out his article, Making Peace with the Phone or, Curse You, Alexander Graham Bell at http://www.stammering.org/makingpeace.html
If my voice improves, I’m hoping that my phone phobia will also lessen. But in the meantime, I’ need to feel the fear and do it anyway.
"BEYOND THE LIMITS”
WHEN: Sunday, March 2 - Tuesday, March 4, 2014
WHERE: Keystone Lodge & Conference Center in Keystone, Colorado
The conference, brought to you by the Parkinson Association of the Rockies, will focus on research, care and support systems through plenary sessions, workshops and panel discussions. Highlights will include: the Michael J. Fox Foundation Research Roundtable, NASA Astronaut Rich Clifford and invited national and international speakers recognized for their expertise in the PD community, including selected speakers from Keystone Symposia's concurrent scientific meetings on Parkinson's and Alzheimer's Disease.
WHO SHOULD ATTEND
The conference is a rare opportunity for those researchers, scientists and clinicians serving the Parkinson community, as well as those individuals living with the disease and their care partners to interact with and learn from each other.
Conference Fee: $275/Participant
Conference Fee Includes:
Entry to All Sessions
Cocktail Receptions (Sunday & Monday)
Continental Breakfast (Monday & Tuesday)
Coffee Breaks (Monday & Tuesday)
Lunch (Monday & Tuesday)
Conference Fee does NOT include lodging or travel accommodations. See more at: http://parkinsonrockies.kintera.org/faf/help/helpEventInfo.asp?ievent=1089631&lis=1&kntae1089631=B3CED3DF00B94B14B183374959F9CE94#sthash.fY8Eedwz.dpuf
CONTACT FOR MORE INFO
(303) 830-1839 | Info@ParkinsonRockies.org - See more at: http://parkinsonrockies.kintera.org/faf/home/default.asp?ievent=1089631
Speakers and Presenters at Global Community Conference on Parkinson’s Disease
Stanley Fahn, MD, of Columbia University, is literally one of the founding fathers of this profession. He founded the Movement Disorder Society and edited their journal for over a decade. He has mentored and educated many of the brightest minds in the field of Parkinson's disease and has been involved in literally every large study for Parkinson's disease over past 40 years.
Joseph Jankovic, MD., at Baylor, did his fellowship training with Dr. Fahn in the early 70s. He has been involved in 100s of clinical trials for Parkinson's disease over the past 40 years and has authored over 800 articles.
Neuroscientist Dennis Selkoe of Harvard University has founded and directs 2 labs focused on the study of neurodegenerative diseases. His team was instrumental in identifying the role of beta amyloid plaques in the progression of Alzheimer's disease.
Although Patrick Lewis, a research fellow for Parkinson's UK, is still early in his career, he has already done very interesting research on genetic mutations of the Park8 gene, LRRK2, currently the most commonly identified genetic cause of Parkinson's disease.
Caroline Tanner, MD is the Director of Clinical Research of the Parkinson's Institute in Sunnyvale, California. She has done groundbreaking research on the link between pesticides use and Parkinson's disease. Interestingly, the Parkinson’s Institute was founded by another brilliant neurologist, William Langston. Dr Langston discovered the link between MTPT and Parkinson's disease, a chemical that allowed researchers to induce symptoms of Parkinson's disease, leading to many groundbreaking research breakthroughs.
German researcher, Thomas Gasser MD is the director of the department of neurodegenerative diseases at the University of Tubingen. He has done extensive research on the genetic causes of Parkinson's disease with over 200 articles in peer-reviewed journals. He's also co-director of the Parkinson's Genome Network
Becky Farley, PT PhD is the founder of Parkinson's Wellness Recovery (PWR!) a high intensity, interdisciplinary approach to treating Parkinson's disease. Many of you may know Dr. Farley from her work developing the LSVT BIG program in the early 2000s. The program, Parkinson's Wellness Recovery (PWR!) is a more dynamic and flexible expansion of many of those concepts, incorporating speech, voice and cognitive components as well.
Deborah Hall, MD of Rush University of Chicago was initially at the University of Colorado movement disorders program. She has been involved in research ranging from genetic elements of the disease to the benefits of exercise for Parkinson's disease (including some of the recent research by Margaret Schenkman at CU Denver).
Helen and James Whitworth are the founders of the Lewy Bodies Dementia Association (LBDA) and authors of a very excellent book, "A Caregivers Guide to Lewy Body Dementia". They are a fabulous resource of information to help care partners helping their loved ones cope with many different elements of the disease.
Andrew Singleton of the NIH, has developed a large body of research on the genetic causes of Parkinson's disease, including some early seminal work on LRRK2 imitations.
Haydeh Payami of the Wadsworth Center in New York, has also done interest in work regarding genetic and environmental factors involved in Parkinson's disease (including an interesting study on the protective effects of coffee). She also has a strong focus on healthy aging, particularly healthy brain aging.
Ken Marek of Yale University, is cofounder of the Institute for Neurodegenerative Disorders is a nonprofit focused on evaluating and developing new treatments for Parkinson's disease as well as methods for early identification of Parkinson's disease.
The closing speaker is Dave Iverson host of the radio program, "Forum” at KQED in San Francisco. He's also the writer, director/producer and correspondent for the PBS Frontline documentary "My Father, My Brother and Me" about his family’s struggle with Parkinson's disease. Since Dave’s diagnosis with Parkinson's disease in 2004, he has been a relentless advocate and public spokesperson for Parkinson's disease.
As an additional treat, former NASA astronaut Rich Clifford, the only person to perform a spacewalk after receiving a diagnosis of Parkinson's disease, will be speaking about his experiences. In addition, the conference will be premiering the one-hour documentary, "The Astronaut’s Secret” about Dr. Clifford's incredible story.
In addition, a number of local neurologists, neurosurgeons and scientists with expertise in Parkinson’s disease have been invited to speak.
At one of our Rockyettes holiday dance performances, a member of the audience reported that one of the dancers wasn't smiling and looked sick. I was relieved to find out that I wasn’t the dancer identified as the unsmiling, sickly one.
But I have been known to forget to smile while dancing. With living with Parkinson’s Disease (PD) for 17 years, smiling doesn’t come easy. The rigidity of my facial muscles caused by PD has resulted in an appearance of a masked face-–a face that looks unexpressive, frozen, anxious, stern or angry.
Dance performances require a lot of multi-tasking. In addition to smiling and acting as if I am enjoying myself, having to remember and execute the dance steps and recalling the sequences of steps can be challenging. I sometimes need a cue to get myself smiling. The trigger that I frequently use is visualizing myself on stage with the other dancers in front of a large audience kicking in the chorus line of the Can-Can. Now that image makes me smile, in fact, it often makes me laugh out loud.
When I remember to give the gift of a smile to the audience, it is usually reciprocated. A genuine smile is not only good for the giver of the smile, but also the receiver. Smiling is contagious.
I exercise my facial muscles when standing in front of the mirror making faces using my lips, eyebrows, smile muscles, jaw and tongue. I sometimes do my practicing while driving or when at a stop light waiting for the light to turn green.
In addition, when practicing at home, the following exercises get my smiling muscles moving:
1. Sit and Be Fit—Facial Exercises
Neuro Rehab for Stroke and Parkinson’s
Mary Ann Wilson, RN
2. Exercises for PD Facial Masking: MAKIN' FACES!
So spread sunshine all over the place, and put on a happy face.
I’ve grown weary of whining about it. I’m tired of trying to fix it. I’m frustrated trying to understand it. I have no adequate words to describe it. It is gradually chipping away at my self-confidence. I hate burdening my family and friends with my complaints about it. I no longer want to make excuses for it. It is time to stop feeling sorry for myself about it. I’ve been preoccupied and plagued by it far too long.
“It” is my Voice. It has been described as quiet, hoarse, raspy, breathy, strangled, slurred, whispery, unintelligible, strained, weak, lacking expression, monotone, and other adjectives too numerous and hurtful to remember.
My voice problem started more than 20 years ago and pre-dated my diagnosis of Parkinson’s Disease (PD) 17 years ago. As much as I’d like to blame all of my voice problems on PD, I can’t, but PD and Deep Brain Stimulation have definitely worsened my voice. After more than 75 speech and voice therapy sessions in the past 20 years as well as 3 vocal cord surgeries, I must accept the possibility that this is as good as it gets with my voice.
I’ve been able to solve most of the problems in my life with a lot of hard work and finding the right human guide or teacher to help me along the way. I’ve frowned on those who have given up their problems to God without trying everything humanly possible to solve them.
In order to make peace with my voice, I will likely need to rely on God’s help. Acceptance of my voice as it is does not mean that I am giving up on it. Instead of putting my life on hold waiting for my voice to improve, I am focusing my energy on my strengths and moving on with my life.
Mary Spremulli, the creator of Voice Aerobics, wrote an excellent article entitled “Support Groups Fill Important Void and Allow Some to Pay It Forward” at http://voiceaerobicsdvd.blogspot.com/#!/2013/12/support-groups-fill-important-void-and.htm.
I concur with the ideas in Mary’s article and would like to make a few suggestions about finding the right support group that meets your needs. It is important that you find a group where you feel comfortable with the members, a group with where there are people of similar ages and similar stages of Parkinson’s Disease (PD), a group that has a strong leader and that encourages all of its members to participate in the meetings and doesn’t tolerate one member dominating the group.
I vividly recall that day in May of 1996, two days after I was diagnosed with PD at the age of 46. My husband, Tom and I arrived early at a young-onset PD support group. We mistakenly assumed that people with young onset PD were also the recently diagnosed with PD, and that they all were approximately within our age range. We were wrong on all three counts.
Folks in their 70s arrived, some limping, some struggling to be ambulatory with walkers, others in wheelchairs who had long given up dreams of walking, and one person even arriving on a stretcher.
I don't remember one word spoken at that meeting. However, the feeling that has remained permanently etched in our brains for the past 17 years is HORROR. We freaked out. Although we left the meeting at break time hoping to mitigate some of the damage done by observing those with advanced stage PD, we had nightmares for three nights. If this is what young-onset PD looked like, how could normal or late-onset possibly look worse? We wanted no part of any onset PD. That was the one and only support group meeting that we attended for the first ten years following my diagnosis.
The following suggestions are to prevent this from happening to other persons who are considering joining a support group.
It's important to do your research. Talk to your local PD organization to find out the various support groups that they offer in order to find one that meets your needs.
Contact the leader of the support group that you are considering and get a sense of the people who are the members and to determine if this group might be suitable for you.
Ask the support group leader if you can attend the meeting as a guest and if he or she can connect you with a person(s) that can introduce you and welcome you to the group.
And if you still can’t find a compatible group, consider forming your own support group. Valerie Graham, a person with PD and Deep Brain Stimulation (DBS) and I felt that there was a need for a group that focused on the unique aspects of PD and DBS and formed the Bionic Brigade, the DBS Support group in Denver in 2006. Through creating this support group, we’ve built a community of people who can provide information, share experiences and support one another. As a result, we feel less isolated, not so alone and more empowered.
After reading Rachelle Friedman’s article entitled “10 Things You Shouldn’t Say to Someone Who Uses a Wheelchair,” I was motivated to write a Parkinson’s Disease (PD) version of “what not to say” and hopefully clear up some of the misconceptions.
1.You don’t look like you have PD.
PD progresses differently in each person. Not everyone experiences all of the same symptoms or has the same severity of symptoms. When the PD meds are working well, one can look nearly normal and can be highly functioning, and in contrast, when the meds are not working effectively, one frequently has trouble functioning and it is often apparent that the person has some sort of medical condition.
2. You don’t look old enough to have PD.
While the average age of onset of PD is around 60 years old, there is a large group of young-onset folks diagnosed with PD before the age 50.
3. I don’t see you shaking. Are you sure that you have PD?
The majority of people with PD experience the motor symptoms of tremors, stiffness and slowness. While 70% of persons with PD have a resting tremor, others don’t experience any form of tremor whatsoever.
4. My Grandpa had PD, so I know exactly what you are going through.
If your Grandpa had PD before the discovery of Sinemet, the gold standard of medicine for PD in the 1960s, his condition was likely far worse than patients with PD today. Each person’s experience of PD is unique, which makes it nearly impossible to know what someone is going through.
5. Hackneyed platitudes such as the following can be perceived as insulting or annoying.
Everything happens for a reason.
Just be glad you don’t have anything worse than PD.
God does not give us more than we can handle.
My thoughts are with you
What doesn’t kill you makes you stronger.
6. You are an inspiration and you are so brave.
When being described as inspiring or brave, many people with PD feel pressured to live up to these expectations. It makes them feel anxious to become the poster child for inspiration and bravery and afraid to reveal their true fears.
There is nothing inspiring or brave or glamorous about living every-day life, doing daily errands such as going to the grocery store, cooking and eating dinner, cleaning, reading, attending doctors’ appointments.
7. With your positive attitude, I know you’ll beat PD.
While a positive mental attitude is very helpful in living with PD on a daily basis, PD continues to be a chronic, progressive neurological disorder that is currently incurable.
8. There will be a cure in the next 5 years.
When I was diagnosed with PD more than 17 years ago, the buzz in the neurology community was that there would be a cure for PD within the next 5 years. Three 5 year periods with PD have come and gone, and there is still no cure. False hope is not reassuring.
9. Why are you parking your car in the handicapped space if you don’t have trouble with walking?
While sometimes some people with PD can walk without difficulty, other times these same individuals have gait and balance problems making it difficult to walk safely. At these times, parking in a handicapped parking spot can be helpful.
10. What do you do all day? It’s good that you get out of the house once in a while.
I am an active person who enjoys walking, reading, writing, blogging, volunteering, going to movies and dancing. I get outside everyday and am not a hermit.
11. Often said by doctors--You are a highly “unusual” case.
I don’t want to be odd or unusual. My preference is to be described as a fascinating and interesting person with a challenging medical condition.
12. Suffer, suffering, sufferer (any derivative of suffer)
I hate all those “suffer” words because many of us with PD don’t feel or act like helpless sufferers, but instead are proactive in our medical care.
"10 Things You Shouldn’t Say to Someone Who Uses a Wheelchair"
By: Rachelle Friedman
Gratitude has never come easily to me. However, with the observance of American Thanksgiving tomorrow, I am prompted to reflect on the topic of gratitude.
“Gratitude is the inward feeling of kindness received. Thankfulness is the natural impulse to express that feeling. Thanksgiving is the following of that impulse.” Henry Van Dyke
As a lifelong perfectionist and control freak, I tended to disregard my feelings of kindness and overlooked the expression of gratitude. I felt that I could only be grateful when things were perfect in my life. But with the diagnosis of Parkinson’s Disease (PD), things never will be perfect, and there is only so much I can do to control some of my PD symptoms.
While I’ve never been grateful for being diagnosed with PD, I had taken for granted the people and experiences that I had while walking down my PD path. I needed a gratitude adjustment.
I started a Gratitude Journal. Some of the blessings that I recorded include:
I am grateful for the love and companionship of my husband, Tom, over the past 39 years of marriage.
I am grateful for the camaraderie and the sharing within our Bionic Brigade DBS (Deep Brain Stimulation) Support Group.
I am grateful to family and friends who accept me with PD and provide encouragement and enjoyment.
I am grateful for the medical and allied health care communities who provide competent and compassionate care.
I am grateful to be a dancer with the Rockyettes. They always make me smile and bring a spring to my step.
I am grateful to the readers of my blog, Shake, Rattle and Roll, who allow me to share my ideas and validate that I’ve found my niche as a voice for those with PD.
With heartfelt thanks and warmest wishes,
Shake, Rattle and Roll
Traveling can be stressful for people with Parkinson’s who travel alone, travel with a companion or spouse, or travel with friends and family. The following are some tips for bringing back some of the fun to your travel experience.
In Preparation to Travel
Being well prepared for your trip can reduce a lot of your anxiety. To help you get organized, set up a binder to keep all of your travel documents in one place. Use sheet protectors for documents that you don’t want to hole-punch. Set up dividers and tabs in the binder such as: Air, Hotel, Car Rental, Passport, Contact Persons, Physicians and Medications, and Maps.
Prepare a list of contact information of those people you are visiting at your destination, including dates and times that you are visiting, as well as their names, addresses, home and cell phones, and driving directions.
Bring your hotel confirmation information.
If you are renting a car, bring your car rental confirmation information and your automobile insurance card.
Prepare a list of the details of the activities and events during your trip e.g., dates, times and locations of the activities you have scheduled and the events you are attending.
Prepare a list of the contact information of your neurologist including name, organization, address, phone, and email.
Prepare a list of your medications with names, dosages, and timing of medications. Make sure that you have enough medication for your entire trip plus a replacement supply. Talk to your doctor and request enough medication refills to get you through the trip. Carry on all your medications in their original bottles in your carry-on luggage. Bring a small weekly pill organizer to hold the pills for a week while you are en route. If you are staying longer than a week, you can refill your pill organizer from the original bottles. Bring a pill-cutter, if needed.
If you have Deep Brain Stimulation (DBS), ask your doctor for the phone number of a DBS Therapy specialist at your travel destination in case you need some help with your DBS system.
Other Things To Do In Preparation For Traveling
Check the passport’s expiry date to make sure that your passport is current.
Know the details about your medical insurance coverage in case you should require medical care while you are traveling.
Even if you generally don’t use a wheelchair, you may want to consider getting a wheelchair to get through airports if you have tight connections and gates that seem miles apart, for sightseeing and to help prevent fatigue.
When Booking Your Flight
Try to book a non-stop, direct flight.
When you make your reservation, request preferred seating, either disability or a seat near the plane’s entrance.
Provide advance notice to your airline, travel company or travel agent if you require assistance at the airport. Often there is a designated person who coordinates travel, provides information, and answers questions ahead of time.
Consider purchasing trip cancellation insurance so that if you need to cancel, you will be covered. Review the details of your coverage under your trip cancellation insurance.
Arrive at the airport well ahead of your check-in time.
Bring your medications in your carry-on luggage.
Carry-on luggage limits do not apply to medical supplies, equipment, and mobility aids carried on and/or used by a person with a disability. Mobility-related items are allowed through security checkpoints after they are cleared through screening. These include: wheelchairs, scooters, crutches, canes, walkers, orthopedic shoes, tools for wheelchair assembly and any other disability-related equipment and associated supplies.
If you require a family member or companion to accompany you through the security checkpoint, obtain a gate pass for that person at the same time you get your gate pass/boarding pass.
TSA (Transportation Safety Administration) has a program for screening people with disabilities and their equipment, mobility aids, and medical devices.
Your traveling companion may accompany you and assist you during your screening.
If you need to sit down during the screening, you should be allowed to remain in your wheelchair if you have one.
Screening For Those With DBS
For those with DBS, traveling by air gets a little more complicated.
You can go through the security line until you reach the metal detector.
Do not go through the metal detector. If you go through the metal detector, your neurostimulator device may set off the alarm and the security equipment may turn off the neurostimulator.
If they try to force you to go through the detection device or be screened by means of a security wand device, calmly and firmly insist that you need a pat-down instead.
The TSA employee will call for a male or female “assist” to provide the pat down, and will advise you where to wait.
When the pat-down person arrives, repeat to this person that you need a pat-down. If they asks you “why,” tell him or her that you have an implanted medical device. Don’t try to explain the intricacies of DBS.
Show the person your Medtronic Patient Identification Card, if necessary. It contains information about you, your device, and your doctor, plus Medtronic’s Patient Services number. This card will NOT exempt you from the screening process.
Once your carry-on items have cleared security, they will be taken by the TSA employee so that you can keep them in your view during the pat-down.
Before starting the pat-down, the TSA employee will ask if you want a personal screening or a private screening. My suggestion is to have a screening in public view in the event that anything inappropriate occurs and you might need bystanders to provide documentation.
The TSA employee will do the pat-down with his or her hands instead of a metal detection wand.
When the pat-down is finished, don’t forget to pick up your belongings including your carry-on luggage which has gone through the same screening machine as everyone else’s.
Once you’ve cleared security, use your patient controller to make sure your DBS system is still on. If it has turned off, turn it back on.
During Your Flight
Let airline employees know your needs during travel, like stowing luggage, opening beverages, and bringing water to take with your medication.
Make sure you stand up and stretch every hour or so and/or do a set of seated exercises.
On long flights, your doctor may recommend compression stockings to manage the circulation in your legs.
Bring some snacks and bottled water to enjoy during your flight.
On Your Trip
Maintain your usual medication schedule and diet, drink plenty of fluids and keep yourself hydrated with water.
If you are changing time zones, most doctors suggest that you continue to take your medications as prescribed with the same time intervals.
For those with DBS, check your neurostimulator once a day. If you suspect that it was turned off, make sure you and/or someone is able to turn on your DBS system again.
Pace yourself and balance busy days with restful breaks.
Speak up and let others know what you need. Most people are happy to help.
“Daily Living--Travel Tips” by Medtronic at http://www.medtronic.com/patients/parkinsons-disease/living-with/daily-living/traveltips/index.htm?PC=13442c6668300
“Traveling with Parkinson’s” by Fran Squire in a Parkinson Society Ottawa publication, Volume 34, Issue 2, Summer 2011.