Shake, Rattle and Roll

Your Victory May Just Be At the Next Exit

Keeping in mind Davis Phinney's motto is that "every victory counts," it's nice to have some victorious news to share.    

                                                                                                                                                   

Victory 1: I had an appointment with neurologist and movement disorder specialist, Dr. Avi Kurtz. From the moment that I walked into the appointment, my right hand started shaking uncontrollably. I've complained to him about my right hand tremor in the past, but this time he actually witnessed my tremor for an hour. He paid attention and watched the tremor closely, took notes, changed the Deep Brain Stimulation settings for Parkinson's Disease and asked me which setting seemed better--this setting or that setting--similar to a vision test.

He discovered that the frequency setting was set too high for my condition. My tremor almost disappeared entirely when he reset the frequency. Now that I've had several days with the new settings, there is very little tremor in my right hand, I finally feel at peace without all of that shaking and movement.

Victory 2: I've followed Dr. Kurtz's recommendation of reducing the dosage of one of my anti-Parkinson’s meds by 50%. This has resulted in a major decrease in my dyskinetic episodes (those wild, involuntary movements) in my legs. On many days, my dyskinesia is almost non-existent.

Victory 3: One more victory: A couple of nights ago around dusk, my husband, Tom, took our English Springer Spaniel, Rusty, out for a walk. When they arrived at the park, two little boys (about age 4 and age 7) came up to them, crying and very upset, saying they couldn't find their parents. Tom got the phone numbers of the parents from the older boy, and called the police. While waiting for the police, the kids played with Rusty. The younger boy gave Rusty a full body bear hug and lots of pats. It may not be too late to convert Rusty into a therapy dog. This was a victory for Rusty, Tom and me who adopted Rusty from the rescue and transformed a distressed, fearful dog into a faithful, companion dog, who now seems happy and content. It was a victory for all of us when Rusty showed that he is finally beginning to trust humans.

Spaced Out in Denver

By GUEST BLOGGERS:  Charlotte Stall and Julie Slater, PD Advocates and Writers in Denver, Colorado, on behalf of the J P Parkinson’s Book Club

When Julie and I first met with Kate to discuss being guest bloggers, our goal was to part share our experience and knowledge about how to start and lead a Parkinson’s Reading Group.  About a year and a half ago, Julie and I had done just that.  We felt like we needed a way to share the tremendous amount of available information about this disease.  We envisioned a group that would provide support to PD folks in a format that was different from the terrific, already established support groups in our area.  We knew we had both personally benefited from our affiliations with our local support groups during the initial years of our diagnosis. Now felt there was a need for something like a “next step” for those of us who had been living with PD for a while.   We decided not to have guest speakers.  Rather, we would be the leaders, and it would be our learning and sharing with each other that would provide support.

However, at one of last week’s beloved exercise classes, we learned that we probably would have to find another place to exercise.   Our dedicated teacher had searched high and low to find our current gym, but the gym had recently informed our teacher that they were unable to continue to provide the weekly, free spot for us.  “Not again “and “not another move” was what we were hearing. Disappointment was the feeling in the air.  We have now been told that our exercise class is indeed cancelled until further notice. Exercise is so important to our well-being, so we choose to publicize our plight and search for a new space as the topic for this blog submission. The book club blog post will have to wait for the future.

Here’s some background about the situation in our town:  Much of the space used for a variety of classes and events is donated.  We appreciate the donated space and the dedication of the professional teachers, often volunteers, who teach the classes. We are fortunate to have a variety of programs in the Rocky Mountain Region.  We have boxing, high intensity exercise, dance, yoga, and Tai Chi classes. There are so many exciting and valuable programs in our area that we probably have missed some activities in this list!  Depending on your insurance plan, you might also be lucky enough to have your insurance cover a membership in a local health club.  Still, there is a need for more spaces and ventures. As a PD group, we are a growing community.  We need more classes and more instructors who are trained to teach those of us who have PD.

We know that exercise is as important as our medications.   We try to make it a priority in our lives.  If you are reading this blog, but don’t know anyone with PD, you may think of someone with PD as old, hunched over, shuffling, and barely managing chair exercises.  If this is the picture you have of someone with PD, we want to politely let you know that you are wrong!  Those of us with PD are otherwise healthy and active individuals, aged somewhere between 40 and 80 years old. Many of us continue to hike, ride bikes, run, and jog in local races, ski, and snowboard.  If we have had to stop with one physical activity, we look for other avenues to keep our bodies moving.  We use the wide-open spaces of Denver and Colorado for exercise, yet also benefit from, and enjoy our group exercise classes and the informal camaraderie and support participation in these classes provides.  We are motivated to make a difference in how this progressive disease impacts us.

So, if you know of an exercise space centrally located in the Greater Denver area that is available to host exercise classes, please let me know!  Contact me at 303-803-0399 with any leads or information. 

Charlotte Stall

P.S.  We do know of a wonderful place - subdued, very functional, friendly staff, FREE use of the facility and FREE parking. It is the facility where we meet for our PD reading club.  Too bad they don’t have a gym!   But stay tuned.  You can read all about the JP Reading Club in a future blog post.

Traveling Tips for Long Road Trips with PD

One of my readers, is a man who has experienced two “recent” occurrences. He was recently retired from work as well as been recently diagnosed with Parkinson’s Disease (PD). He is planning a long car trip across the states with his college aged grandson. He would like others with PD who have experienced long road trips to share their comments about the advisability of taking such a trip, the pros and cons, etc.

In the meantime, the following are links to some articles about traveling with PD:

Tips on Traveling With Parkinson’s by Kate Kelsall

http://katekelsall.typepad.com/my_weblog/parkinsons-travel/

Parkinson’s Disease: Making Traveling Easier: 

http://www.webmd.boots.com/travel/guide/parkinsons-disease-travel-tips

Tips on Traveling with Parkinson’s

https://www.michaeljfox.org/foundation/news-detail.php?tips-on-traveling-with-parkinson-disease

How can I Make Air Travel Easier If I Have Parkinson's Disease?

https://www.sharecare.com/health/living-with-parkinsons-disease/how-air-travel-parkinsons-disease

Travel Considerations for the Parkinson’s Patient

http://pdring.com/travel-considerations-for-the-parkinsons-patient.htm

 

Other Articles: Look on the Internet for “Traveling with Parkinson’s Disease”

#UniteForParkinson--Reveal Not Conceal

Today, April 11, 2017, is World Parkinson’s Day. I would be thrilled if you could show your support by using or sharing the hashtag #UniteForParkinson on April 11^th.

This organization is trying to raise awareness of Parkinson’s (PD), and to let people know that no matter where they are in the world, there is hope and support available.

You can also visit their website to find out more: www.worldparkinsonsday.com

During the past 21 years since my diagnosis of PD, I have experienced the gamut of emotions in developing my awareness and acceptance of PD. These emotions  have ranged from being discouraged, hopeful, anxious, worried, resigned, content, angry, satisfied, excited, secretive, ambivalent, overwhelmed, and many more emotions.

Writing in my blog, Shake, Rattle and Roll, has provided a source of strength, support and awareness over the years.

The following are a couple of my favorite blog posts about the secrecy surrounding the disclosure of PD.

Sharing or Keeping the Secret of Parkinson's

http://katekelsall.typepad.com/my_weblog/2014/08/sharing-or-keeping-the-secret-of-parkinsons.html

Keeping Parkinson's Disease a Secret 

http://well.blogs.nytimes.com/2012/07/09/keeping-parkinsons-disease-a-secret/

Reveal Instead of Conceal

http://katekelsall.typepad.com/my_weblog/2006/10/disclosure_vs_c.html

I have moved a long distance on my path from concealing to revealing. It has been a lot of hard work, but I'm happy that I've chosen the route toward acceptance. Thank you for your kind support along the way.

Kate Kelsall
Parkinson's and DBS Advocate, Blogger
Shake, Rattle and Roll
Blog Site: katekelsall.typepad.com
Email: [email protected]

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

Say That Again

Book: Say That Again  by Jane M. Cullen

Reviewed by: Kate Kelsall                               

                                                               

                                                                    Photo of Jane M. Cullen

The book, Say That Again, caught my attention.  The book’s author, Jane M. Cullen, tells a fiction story set in London about a 62 year old man, Benedict Marshall, a prominent playwright, who experiences two events in one week that change his life dramatically: being diagnosed with Parkinson’s Disease (PD) and meeting a much younger woman, who is struggling to make a living in her chosen career of acting.   

Early in their relationship, she makes the decision to call him “Mr. Marshall,” and decides that she should be called “Nell.” Initially, they keep their distance and are cautious.

Nell’s role in their relationship seems to be that of a cheerleader, encouraging Mr. Marshall to be all that he can be. For example, she encourages him to learn dancing to combat PD, but he is reluctant and self-conscious. They share their anxieties and worries with each other, as well as have a lot of laughter, playfulness and fun together.

Personally, I am very knowledgeable about PD after living with it for 21 years. Although the author does not have PD herself, her knowledge and understanding of PD is impressive.The general public sees PD primarily in terms of the tremor being the main symptom. Cullen has been able to incorporate some of PD’s non-motor symptoms (depression, anxiety, fatigue, drooling, lack of facial expression, cognitive problems, speech and voice problems) into Mr. Marshall’s character. In this way, she increases awareness about PD in her readers.

Although the subject of PD is a serious one, there are some very funny moments in the book where I laughed and touching moments when I cried. The person with PD is multi-faceted, and there is more to the person than only PD.

I am appreciative that Cullen describes the realities of living with PD with a sense of hope and inspiration.

For more information about Jane M. Cullen and her book, "Say That Again" check out the following:

Website: http://www.janemcullen.com/the-book/

Email:  [email protected]

 

 

 

 

 

 

 

 

 

 

 

 

Personal Triumphs and Trials with Deep Brain Stimulation (DBS)

My journey first started 20 years ago in May 1996. At an appointment with a neurologist, my left hand shook. My right arm hung there like a dead animal. I dropped things.  I had a blank facial expression. My voice was soft and raspy. Typing on the computer slowed and became punctuated with errors. A typed word such as “home” appeared as “homeeeeeeee” on the computer screen. My fingers grew minds of their own. The neurologist requested that I take off my shoes, outstretch my arms, and walk with one foot in front of the other. My body fell hard against the cool tile of the exam room. I failed that test.

The neurologist struggled to get the words out when imposing the verdict. I struggled to listen and understand. She didn’t look at me when she said, “You have Parkinson’s Disease.” I was stunned. Why at the age of 46 was I diagnosed with the old man’s disease of Parkinson’s (PD)?  What had I done to deserve this? It felt like I had just received a death sentence. When I arrived home after the appointment, my husband, Tom, was shocked by the bad news. He kissed me tenderly and reassured me with “we can work it out.”

For the nine years following my diagnosis (May 1996 to May 2005), in addition to adhering to my medical prescriptions, I managed my PD by using my typical coping mechanism of denial. I was ashamed and overwhelmed to be associated with this disease.  I would schedule my neurology appointments before work at  7:30 AM so I could continue to keep my secret. I didn’t want to encounter the shaky folks in the doctor’s waiting room, and I didn’t want them to have to deal with my shaky self.

At one appointment in October 2003, my neurologist observed that my PD symptoms were worsening and that it would become necessary for me to take my medications more frequently and at higher dosages. Also, the side effects from the increase in medications would likely result in the development of dyskinesia, those wild involuntary movements of my arms and legs.

The neurologist suggested that I may want to consider a new surgical procedure called Deep Brain Stimulation (DBS) to reduce my symptoms of PD. From what I can recall, she summarized the surgery as follows: DBS involves the placement of electrical wires in the brain, electrical stimulation is delivered through these wires, and the symptoms are reduced for certain conditions such as Parkinson’s Disease, Essential Tremor, and Dystonia.

I had thoughts of holes being drilled in my head and electricity flying around—eeeeewwww.  I bet that hurts. After all, it’s brain surgery.

I carefully considered the option of DBS. Since I was barely surviving and certainly not thriving. I felt that I couldn’t continue to live with all the shaking and tremors, involuntary muscle movements, fluctuations and turning off and on of the medications, and the meds sometimes working and other times not being effective. And I was becoming increasingly frustrated with my quiet and difficult-to-understand voice and the loss of strength in my voice (my voice had already weakened from Parkinson’s and three unsuccessful vocal cord surgeries). And then there was my ongoing difficulties with programming of the DBS settings.

Despite the some trials and disappointments, I also had some tremendous triumphs while on my PD-DBS path. With a friend, Valerie Graham, I formed a 501(c)(3) non-profit organization called the DBS Voices of the Rockies which is dedicated to guiding and educating those who are considering DBS, those who have had DBS and their families. I've received several awards in the community for my dedication and passion in helping those with PD and and DBS.

For fun and exercise, I take Broadway Dance classes and perform with the Rockyettes (not the Rockettes at Radio City Music Hall, because at 5 feet tall, I don’t quite meet the 5’8” height requirement). My yoga classes help calm my stressed and strained body. My husband,Tom and I frequently walk our energetic English Springer Spaniel, Rusty. Tom and my lives are less active in some ways, but more rewarding in others.

While I once considered DBS to be a death sentence, I have now converted into a life sentence. I am blessed.

In Gratitude

Author Unknown 

The 92-year-old, petite, well-poised and proud lady, who is fully dressed each morning by eight o’clock, with her hair fashionably coiffed and makeup perfectly applied, even though she is legally blind, moved in to a nursing home today. Her husband of 70 years recently passed away, making the move necessary.

After many hours of waiting patiently in the lobby of the nursing home, she smiled sweetly when told her room was ready. As she maneuvered her walker to the elevator, it provided a visual description of her tiny room, including the eyelet sheets that had been hung on her window.

“I love it,” she stated with the enthusiasm of an 8-year-old having just been presented with a new puppy.

“Mrs. Jones, you haven’t seen the room. Just wait.”

“That doesn’t have anything to do with it,” she replied.

"Happiness is something you decide on ahead of time. Whether i like my room or not doesn't depend on how the furniture is arranged, it's how I arrange my mind. I already decided to love it.

It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed  and be thankful for the ones that do. Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy memories I've stored away, just for this time in my life.

Old age is like a bank account. You withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories.”

Thank you for your part in filling my memory bank. I am still depositing. Remember the five simple rules to be happy:

1. Free your heart from hatred.
2. Free your mind from worries.
3. Live simply.
4. Give more.
5. Expect less.

 

I'm Back! I tried leaving PD at home, but was unsuccessful.

"Leave My Parkinson’s Disease at Home" was the mantra that I told myself when going on vacation with my husband, Tom. We traveled to attend the Port Townsend (Washington) Film Festival (PTFF) in September of 2016 and visited friends, Gayle and Bill. It’s our annual ritual, and we have attended about eight of these film festivals in the last decade. We love trotting off to Washington state every September and enjoy catching up with Gayle and Bill and appreciate the cool autumn weather and the fall colors after a long, hot summer.

Bill made a vegetable stew that we shared for the weekend, and we also enjoyed some delicious meals at the restaurants in town. We stayed up late to chat and analyze the films, drink wine and eat our favorite rich and buttery ice cream, Tillamook’s Caramel Butter Pecan. We typically watched about seven films in two and a half days at the film festivals.

It was inevitable that I was unable to hide the sneaky progression of my condition from Gayle and Bill. Visiting them once a year, they were able to witness my escalating PD symptoms first hand.

Among the most troubling and embarrassing symptoms during this trip were my episodes of dyskinesia, when my right leg flailed and made involuntary muscle movements similar to those of Michael J. Fox. These episodes arrived unannounced and each lasted from 15 minutes to 3 hours. Also, my right hand tremor came uninvited, and it acted like the guest of honor. My right hand tremor competed with my right leg dyskinesia for attention. The competition was a tie—my dyskinesia and tremor were equally painful.

My immediate problem at the film festival was finding a seat that could accommodate my flailing leg and me and that I would need a seat where no one was sitting on my right because it was likely that my right leg would move. Once most people understood what I needed, they readily responded by providing the requested seating.

 

Lessons learned: There is no way for you to take a vacation from PD or leave it at home. It will be with you until you die. PD is needy and demanding. I am hoping that I can learn how to peacefully coexist with her.

 

Still Shaking, Rattling, and Rolling in 2016

 

Still Shaking, Rattling and Rolling in 2016

Kate Kelsall was diagnosed with Parkinson’s in 1996, and has been blogging about it since 2006. She chronicles her daily life with the disease — including both her struggles and triumphs — and she does it with honesty and a positive spirit. On her blog you’ll find checklists to help you identify red flags regarding your parents’ health, interviews with other people who have Parkinson’s, and her own medication and meal schedules.

To learn more about the other award winners in 2016 and Healthline, check out the following link 

http://www.healthline.com/health/parkinsons/best-blogs-of-the-year

 

 

 

 

 

 

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UGH

Two of the members of the Parkinson’s Disease (PD) Readers Club kindly asked me how I was doing this summer. I normally filter my words when I talk to people, but this time my unfiltered automatic response was “UGH.” I wasn’t sure what UGH really meant until I looked it up on Dictionary.com and the following is the definition: UGH is a term that means to be disgusted or to show disapproval. Example "UGH, I don't want to go to class today..."

" I realized later that UGH wasn’t a very helpful response, it interrupted our interaction and didn’t encourage the continuation of our conversation.

I struggle between providing Too Much Information (TMI) vs. Too Little Information (TLI). TMI can overwhelm the listener, who may tune me out. If I provide TLI, the listener may perceive me as being shy, disinterested and/or dull.

I was afraid of providing TMI if I would say the following: “ I am worried about the progression of my PD, and that my symptoms have been escalating this summer. On a daily basis, I have at least two episodes of dyskinesia (those abnormal, involuntary movements that can make me seem as though I’m jittery and constantly in motion). And they are exhausting and painful too and can last from thirty minutes to three hours per incident.

In addition, any time in the day or night, I can experience a severe tremor in my right hand, which in the day makes it difficult to use my right hand for writing, cutting vegetables while working in the kitchen, and my fingers are too shaky and stiff to play my accordion. And at night, my tremor time wakes me up and interferes with my sleep."

I am working with my neurologist on how to solve these ongoing PD-and DBS (Deep Brain Stimulation)-related problems or if the problems can’t be solved, how to cope with “this is as good as it gets.”

 

Speech Therapy and Beyond for Parkinson's Disease

 

Mary Spremulli, MA, CCC-SLP, speech-language pathologist, and Owner of Voice Aerobics, will be hosting a  webinar on Friday, August 26, 2016 at 12 pm EDT, titled: Speech Therapy and Beyond for Parkinson's Disease.

 

Mary, has over 25 years experience working with people with Parkinson's and related diseases, and the Voice Aerobics®  program, created by Mary in 1999, was the first of several programs she developed with a goal of filling a gap for patients needing guidance with ongoing speech and voice practice. 

 

The webinar will be one hour, and Mary will discuss individual speech therapy programs that are available for individuals with Parkinson's disease, and also some of the newer device interventions, apps, and community-based programs, including the Voice Aerobics family of products designed to be used at home, before, during, or after therapy.

 

The webinar is free, but registration is limited to 50 people. To register for the webinar and to find out additional information, please visit:

 

https://www.eventbrite.com/e/speech-therapy-and-beyond-for-parkinsons-webinar-august-26-2016-12pmedt-tickets-26905536183?utm-medium=discovery&utm-campaign=social&utm-content=attendeeshare&utm-source=cp&utm-term=listing

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Expectations and Acceptance of DBS

“Expectations were like fine pottery. The harder you held them, the more likely they were to crack.” ― By Brandon Sanderson, "The Way of Kings"

Some people with Parkinson’s Disease (PD) who have had Deep Brain Stimulation (DBS) surgery say that their lives have turned out for the better through the miracle of DBS. Others are disappointed when the results of DBS don’t meet their expectations. Successful DBS is related to realistic expectations.

Reminiscing about my DBS in 2005, I don’t remember much talk about goals or expectations for DBS surgery. I feel grateful to be accepted as a candidate for this potentially life-changing surgery. I do not analyze my expectations in terms of gait, balance, tremor, stiffness or shakiness. I only want to “feel better.”

During the DBS process, my husband, Tom has minimal and guarded expectations about DBS, mentioning something vague that he would consider it successful surgery if I improved by 1% to 5%. I was confused about what kind of improvement he is referring to.

No one talks about DBS expectations in 2005 while everyone talks about DBS expectations in 2016. Everyone includes the patient, the patient’s family and friends, and the DBS surgical team. In this democratic group, it’s important that expectations are clarified, that the similarities and differences of expectations are identified, and that some consensus is developed among these expectations.

People often tell me that “your expectations are unrealistic” and that “you need to lower your expectations.” The following are some of my unrealistic expectations:

• After DBS surgery, I expect to feel like I no longer have PD, like I felt BEFORE I was diagnosed with PD--so full of life and naively thinking that I was invincible. But I was back to full-fledged PD with my shaky hands and arms and wild movement of my legs and feet until my programming was efective.

• I question if I might not require any PD meds after DBS. Although I am able to reduce the dosage of my PD meds by about 50%, I now anticipate that I will take PD meds for the rest of my life, particularly when my medication cycle frequently fluctuates between “on” (working) and “off” (not working).

So, what’s not to expect from DBS?

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 PD 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. Generally, DBS does a good job of managing the motor symptoms of PD.
6. Don’t expect that DBS to be a treatment for your non-motor symptoms of PD such as speech, swallowing problems, freezing, and gait and balance difficulties. Sometimes these symptoms worsen as a result of DBS.
7. Don’t expect that after DBS you will be functioning like 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.

What To Expect from DBS

Expect DBS to improve your tremor, rigidity, bradykinesia (slow movement), off times, and dyskinesia.

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.

For more information on Expectations and DBS, check out the following book: "DBS: A Patient Guide to Deep Brain Stimulation" by Sierra M. Farris, PA-C and Monique L. Giroux, MD. The Symptoms and Expectations Exercise is on pages 23-24.

 

Spreading Parkinson's Awareness Worldwide

April is Parkinson's Disease Awareness Month. Kate Kelsall is spreading awareness about Parkinson's Disease through her article published in Spotlight on PD: Raising the Bar for Healthcare Collaboration, a website in the UK  at: http://www.diseasespotlight.com/parkinsons-disease-qa-with-kate-kelsall/

Check it out.

 

The Dilemma: Who, What, When to Tell and Not Tell in the Workplace about Parkinson’s

It’s a dilemma: who, what, and when to tell those in the workplace about your diagnosis of Parkinson’s Disease.

I’ve always prided myself on being transparent (is that word still en vogue?) and a person who avoids secrecy.  However, honesty may not serve you well when telling your employer and co-workers about your diagnosis of Parkinson’s. If you disclose your medical condition to your employer, forget about any future promotions and advancement in your career. In disclosing to your colleagues, they may respond with “I know all about Parkinson’s. My 90 Year old Grampa had it.” They may think you are disloyal to the company, and may fear that they will have to pick up the slack in the work load. They may pity you, yet you do not want any pity parties. They may worry that Parkinson’s is contagious and may fear that you have a much more serious illness.

However, on the upside, when people are provided information, they often can be a tremendous source of support. They don’t have to have Parkinson’s to respond with empathy. Don’t rob them of the opportunity to provide this support. You both may benefit from this exchange.

For more information, an article, and a podcast on this topic, take a look at this site by Mary Spremulli of Voice Aerobics:

http://voiceaerobicsdvd.blogspot.com/2016/02/when-do-you-tell-friends-employers.html

The New Year: Another Chance of Getting It Right

When I was employed in the business world, there was a lot of focus on goal-setting and performance reviews. Organizations would make big productions out of identifying goals, measuring goals, revising goals, and concocting new goals for the following year. I recall spending many hours complying with all of this analyses, but I always thought that we would be more productive if we just did the work, instead of scrutinize the goals surrounding the work.

In the intervening years, I coasted and did not pay much attention to goals. Because of this negative experience of goal-setting, I never really got into New Year's resolutions. Instead, I tried to stay focused, not get too distracted, and do the best I could.

All my goals now are related to becoming a better person. Ann Landers got it right when she said: “Let this coming year be better than all the others. Vow to do some of the things you have always wanted to do but could not find the time. Call up a forgotten friend. Drop an old grudge, and replace it with some pleasant memories. Vow not to make a promise you do not think you can keep. Walk tall, and smile more. You will look 10 years younger. Do not be afraid to say, I love you. Say it again. They are the sweetest words in the world.” – Ann Landers

Oprah Winfrey made a similar statement when she said, “Cheers to a new year and another chance for us to get it right.”

I would like you to join me in toasting the New Year with another chance to get it right and become a better person.

Gratitude: A Memory of the Heart

Instead of comparing our lot with that of those who are more fortunate than we are, we should compare it with the lot of the great majority of our fellow men. It then appears that we are among the privileged.   Helen Keller

 

I COMPARE myself with people who are more fortunate, taller, leaner, smarter, healthier, prettier, more talented and those who are better speakers, writers, athletes, musicians, singers, and the list goes on. I’m GUILTY of these charges. When I get stuck in a place of jealousy and envy, I need to reflect on my blessings. I start by keeping a gratitude journal of the little and big joys while living with Parkinson’s Disease (PD) with Deep Brain Stimulation (DBS). To begin…

I am GRATEFUL to my husband, Tom, for sharing our lives together for more than 40 years and for his patience and sense of adventure while on my PD path.

I am APPRECIATIVE of my brother, Tom, and my sisters, Pat and Denise, who really “get” this PD and DBS stuff. They allow me to express whatever I feel at the moment, and I don’t have to sugar-coat PD and DBS when I’m talking to them.

I am BLESSED to have Donna Miller, as my business partner who volunteers with me and works with individuals and families with DBS. She brings passion and energy to every person and situation she encounters.

I am FORTUNATE that Valerie Graham, the co-founder of the DBS Voices of the Rockies, is in my life. Her gifts are her compassion and sensitivity relating to those in need, combined with her tenacity in getting the job done.

I’m LUCKY to have found a kindred spirit in my friendship with Mary Spremulli. As a speech and voice therapist, Mary has helped me to improve my speech and voice, and as a friend she has provided guidance, support and hope.

I feel HONORED to have met so many people in the Parkinson’s and DBS communities who have impacted me personally—those living with PD and DBS, the wonderful DBS medical teams in the Denver area, and those allied professionals providing speech, physical and occupational therapy who are often overlooked.

And finally, I THANK my dear readers, who are supportive of my writing and who allow me to do what I love doing and trust me by sharing their personal struggles along the way.

Happy  Thanksgiving—Thursday, November 26, 2015

 

 

 

 

 

 

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/

 

 

Don’t Get Stuck in the Whining

 

After 20 years of Parkinson’s Disease (PD) and 10 years of Deep Brain Stimulation (DBS) surgery, you wouldn’t think that I would have anything to complain about. I’m embarrassed to admit that sometimes I prefer complaining to counting my blessings.

However, with Thanksgiving approaching in a couple of weeks, it’s important that I get all of the whining and negativity out of my system. I want to feel grateful byThanksgiving.

My primary complaint is related to my shaky right hand. I incorrectly assumed that my level of functioning achieved through DBS would remain the same throughout my life time. Wrong. I think most of my complaints can be attributed to that sneaky PD who keeps on moving and progressing.

Shaking from a hand tremor affects my overall functioning. The tremor is painful and wears me out. I sleep about 10 hours a day in search of some tremor-less, restful sleep.

It is sometimes difficult to get my shaky fork to pick up food from my plate and correctly maneuver it into my mouth, without dropping the food under or on the table or on my clothes. When well-meaning friends ask if I’ve considered purchasing the $300 weighted fork invented by Google for eaters with a tremor, I respond that I don't want to consider it.

A shaky, slow, stiff hand combined with poor fine motor skills results in my handwriting being the worst it has ever been. It takes me forever to address an envelope and to do any handwriting. And trying to take coins or bills out of my wallet with a shaky paw is nearly impossible. Buttoning my shirts is becoming more problematic, and I am now considering  a button-free life.

Also, it’s embarrassing to be seen with a tremor while working, dancing and exercising, speaking in public and going out to eat at a restaurant with a friend.

My new neurologist is encouraging me to consider medication adjustments as options for relief of my tremor. This would include the slow introduction of medications one at a time—adding some meds, deleting some meds, and trying different combinations of meds. I am fearful of becoming "spacey” with the change in meds. I’ll ask my husband, Tom, to monitor any signs of “spacey-ness” or “ditzy-ness” coming from me.

So this is what I need to start before Thanksgiving:

1. Adhere to the neurologist’s prescriptions for medication adjustments.
2. Analyze my whining behavior and attempt to get it out of my system.
3. Count my blessings instead of counting my complaints.
4. Compare my PD symptoms with those of others with PD. Most likely I would choose my own combination of PD symptoms that I am somewhat comfortable with vs. another person’s strange mix of symptoms.
5. If there is something that I don’t like, attempt to change it.
6. If I can’t change it, I need to change the way I think about it.
7. Don’t dwell on things that I can’t do anything about.
8. Seek comfort in the Serenity Prayer.

        God grant me the serenity

        To accept the things I cannot change;

        Courage to change the things I can;

        And wisdom to know the difference.

And move along, and don’t get stuck in the whining. And have a whine-free Thanksgiving.

Is It 50/50?

It’s often awkward to know how to respond when people ask me "How are you doing or feeling with Parkinson's Disease (PD)?" When talking to my friend, Gayle, her suggestion was to say "50/50." This means I am doing equally good and bad and/or my health is equally favorable and unfavorable.

Then if people want to know more specific information, they can ask me and I can elaborate and be direct in my response ("Sometimes I don’t feel 50/50, but I feel so sickly that it’s more like 20/80.").

I have been guilty of being too optimistic when my response was “great”

or when my response was “I feel like a million dollars.” (80/20)

 

 

 

 

I have been guilty of being too pessimistic when my response is “I hate this @#$%^&*+ disease,” or “There will be no cure for PD in my lifetime.” (20/80)

I have also used some neutral or realistic responses such as “I have good days and bad days” or “It‘s not too bad considering I’ve had Parkinson’s for 20 years.”

Keep in mind that PD is a chronic disease, currently incurable and that a cure in my lifetime is unlikely. It is sometimes difficult to maintain hope.

Most people want to be around me only if I'm feeling well and not whining

about my health. People absorb my worries and become fearful that they too will develop similar symptoms. They see me as a cheerleader as well as a conqueror of all things problematic with PD and DBS. They want to be inspired by me.

The dilemma is whether to be brutally honest and tell them the gruesome details of PD or to sugar-coat the symptoms in order to make PD more palatable.

I think I’ll stick with “50/50.”

 

 

Heels On, Head Up, It's A New Day

Heels On, Head Up, It's A New Day

By Tonya Walker

Copyright ©2015

 

What made you decide to pursue DBS? 

That is an interesting question, because it was a long process for me.  When I was initially diagnosed with Parkinson's Disease (PD), my neurologist spent a considerable amount of time discussing treatment options with me.  I recall that at the time he was explaining Deep Brain Stimulation (DBS) I scoffed at the idea of brain surgery.  I thought to myself - “That’s crazy! I’m not having brain surgery!” Here I am eight years later with two DBS procedures under my belt.  Looking back, I think I was crazy to not consider DBS earlier, but you have to be ready for it.  How do you know when you’re ready to have a hole drilled into your head while fully awake? In the words of my neurologist – “you’ll know.”  And, I did.  Once I reached a point where brain surgery was more appealing than continuing to live with the symptoms, I was ready.

Was the DBS surgery painful? 

The surgery itself was not painful.  Post surgery my neck was sore where the wires were tunneled down my neck to the device in my chest. At first I thought I was doing great – only taking Ibuprofen and Tylenol to manage the discomfort where the incision was on the side of my head.  I was ready to shred my prescription for Percoset, and then it hit me like a ton of bricks – the pain in my chest where the device was implanted was excruciating.  Honestly, I wanted to rip it out of my chest.  There was so much pressure on my collarbone as the device was trying to find its’ “home” in my body.  The nurse attributed the pain to my petite size.  At the time, I had very little body fat (note: this is currently not the case) and the device did not have a lot of room to settle in. 

What got better after DBS?

Everything.  Really. It was an almost indescribable life-changing experience.  Psychologically and emotionally, I felt like I did before PD. Even my dad observed that he could see the “sparkle” in my eyes again. He was absolutely right – I had drive and motivation again.

What were you able to do after DBS that you couldn't do before DBS?

To help you better understand the improvements to my life after DBS, I want to share a journal entry that I wrote shortly after my first surgery:

To give you an idea of how the disease affected me here are some of the little things that I can now do, but was unable to do prior to surgery.  The little things that I will never again take for granted:

-  The ability to hug my husband and child with both arms instead of using only the right arm.

-  The ability to type with both hands. It is amazing how much more productive one can be when you can use both hands.  Similarly, I was able to type a text message using my left hand.  Also much faster to text with both hands.

-  Waking up and being able to get out of bed when I want to; Not waiting for the meds to kick in so I can walk.

-  Having the ability to sit/lie still.  Never underestimate the luxury of being able to sit still. 

-  Having a pedicure whenever I want to instead of timing it around my medicine schedule. Even when I tried to time it right, my foot would move so much it was nearly impossible for the lady to paint my toe nails.   

-  The ability to run around with my son, walk with him while he rides his bike around the neighborhood or do any other physical activity he wants me to do without having to wait on my body to cooperate.

Of course there are many other things, but hopefully this list will give you an idea of how life-changing this surgery has been for me and my family.

What got worse after DBS?

Absolutely nothing!  With that being said, I realize that not everyone has a great experience with DBS. Like with any medical procedure, the results vary for each person.  Anyone considering DBS should speak with their doctor to determine if they are a good candidate for the procedure.

What could you do before DBS that you aren't able to do after DBS?

Ride roller coasters with my son.  Well technically pre-DBS my son was not tall enough to ride roller coasters, but if he was then I could ride with him. When he finally was tall enough to ride Disney World’s Space Mountain, I didn’t think twice about riding with him.  Afterwards I thought “maybe that wasn’t the most brilliant idea.”  I forgot how the sudden movements of the ride whip you around.  I have since excluded roller coasters from my theme park adventures.  Looks like It’s A Small World and spinning Tea Cups are in my future - but I can live with that.

Did you have any complications from DBS?

Fortunately, no. I am incredibly blessed to have a wonderful team of doctors and nurses at the Mayo Clinic in Jacksonville. 

Do you have regrets about getting DBS?

No.   I would do it again.  In fact, I did.

How has DBS changed you personally?

I truly feel like I got my life back.  DBS brought back my “fire.”  I finally had the energy and drive to do things again. Pre-DBS I did not tell people outside of my family and closest friends that I have PD.  I was living in denial.  DBS made it real.  It’s difficult to hide that you’re having brain surgery, so, I started to share my diagnosis my friends and colleagues.  Everyone was incredibly supportive. 

I now feel a calling to share my story with others.  I want to help raise awareness.  So few people seem to understand the disease or to appreciate that it affects people of all ages.  I want to change the general perception that PD is an “old” persons disease.  And, I want to continue to fundraise to find a cure!

What was the best advice that someone gave you about DBS?

My neurologist and some friends in the medical field encouraged me to consider DBS as a viable treatment option.  That was great advice.

What advice would you give others considering DBS?

Talk to someone who has actually undergone the procedure.  I am more than willing to speak with anyone considering the procedure.  I can be contacted via email: [email protected].

What was your day-to-day life like before PD/DBS and after PD/DBS? My life was unpredictable. I never knew when my body was going to turn into a train wreck in a matter of minutes.  Whether it be because I ate something that interfered with the absorption of the medicine, I was stressed, or I took my medicine a little late. Some days my body turned into a train wreck for reasons I will never know or understand.

How did you create as your name the Shoe Maven?

I have loved shoes for as long as I can remember.  My family members recall that, even at a young age, the first thing I did when I greeted someone was look at their shoes. I would compliment them on their shoes and promptly ask if I could try them on. As the disease progressed, my balance was compromised and I had to forego stylish heels in favor of more stable flats.  The benefits of DBS included improved balance, and I was soon wearing my favorite heels again.  The Shoe Maven is a celebration of the end of my hiatus from heels. The Shoe Maven allows me to share my life-long love of fashion, but more importantly it serves as platform for my dedication to raising awareness about PD and fundraising to find a cure via Team Fox events to benefit the Michael J. Fox Foundation.

Tonya battles Parkinson's Disease in style as the founder of The Shoe Maven and TSM Originals.   When she is not styling her latest outfit or designing her latest graphic tee, Tonya is a full-time law professor, a vocal advocate for Parkinson's awareness and actively involved in fundraising for the Michael J. Fox Foundation.  

 

Achieving the Balance between Medications and Food

It’s challenging being a woman with Parkinson’s for nearly two decades.

On Monday, I am focused on food and medications. It entails delaying my intake of food, shopping for food, preparing meals, eating meals, washing the dishes and cleaning up the kitchen, calling the pharmacy, ordering and getting renewals for medications, picking up medications, organizing medications in the pill container for the week, remembering which medications require food and which do not, and taking medication.

In addition, the medications prescribed for Parkinson’s (PD) can cause nutrition-related side effects, such as nausea and poor appetite.  So there are meds for the symptoms of PD and other meds for the side effects of taking the meds for the symptoms of PD.

Eating high protein food can interfere with the effectiveness of the absorption of Sinemet (the gold standard medication for PD). Protein can be eaten as long as it’s timed at about a half hour to an hour before or after the protein-containing meal.

I find it nearly impossible to adhere to this regimen and also maintain a LIFE outside the world of PD.

8 AM-9 AM--Don't eat meal that includes protein 

9 AM-Take PD Medication

10 AM-Eat meal including protein

11 AM- 12 noon-Don't eat meal that includes protein 

12 noon-Take PD Medication

1 PM-Eat meal that includes protein

2 PM-3 PM--Don't eat meal that includes protein 

3 PM-Take PD Medication

5 PM-6 PM--Don't eat meal that includes protein 

6 PM-Take PD Medication

And then I have a different medication schedule before bed

Sometimes it's easier to not bother with eating and skip the meds and to sip a chilled glass of Chardonnay instead.

To learn more:

The following is a highly informative and comprehensive article about nutrition and PD. I highly recommend it.

Nutrition and Parkinson’s Disease: What Matters Most, published by the Parkinson’s Disease Foundation, author KarolTraviss, MSc, RD

http://www.pdf.org/en/winter06_07_Nutrition_and_Parkinson

 

 

Nearly Normal

 

"Nobody realizes that some people expend tremendous energy merely to be normal."  Albert Camus

Since my diagnosis of Parkinson’s Disease (PD) 19 years ago and Deep Brain Stimulation (DBS) surgery 10 years ago I have attempted to look and act normal, and sometimes I have been Nearly Normal. It takes a lot of hard work and patience. I've always been long on hard work and short on patience.

Several friends without PD have commented, “most people would not be able to tell that you have PD.” I accepted these words as compliments as they were intended. Upon reflection, I wondered if looking and acting like I don’t have PD might be condescending toward the people with PD who are not doing as well. And if my goal is to increase awareness in the public about PD, how does minimizing or disguising my symptoms help me to do this?

With eating and swallowing, I remember to carefully get my food securely on my fork, maneuver it to my mouth, swallow, avoid spilling food on my clothes, the table or the floor (I’ve occasionally dropped food with my shaky hand on all three surfaces during the same meal). I remind myself to slow down the pace of my eating, take small bites, and do a lot of chewing. I need to be careful to take my time when I swallow my food and drink my beverages, so that the they don’t go down the wrong pipe

When taking my medications, I don’t throw the pills into the back of my throat and swallow, but instead sit or stand up straight while slowly take one pill at a time.

While walking, I avoid distractions such as talking on my cell and don’t wear earphones or listen to a CD. I concentrate on my walking.

Up until recently, I prided myself on NEVER falling. I was the PD poster child for perfect balance and gait. But more recently, when I fall, I often catch myself before hitting the ground and avoid a full-fledged fall.

I expend tremendous energy when I attempt to look and act Nearly Normal. I must constantly be vigilant and avoid distractions. I gotta wonder if it's worth it.

Time Waits for No One

It happened to three of my family members.

First, four days before she died, my Mom had her first swallowing evaluation. At that point, she was unable to eat or drink anything. Her cause of death was dysphagia (swallowing difficulties) and Lewy Body Dementia.

Second, my mother-in-law’s death certificate said one of the causes of her death was Parkinson’s and another cause was malnutrition. She refused a feeding tube and was unable to swallow and ended up malnourished.

Third, my uncle had dementia and died when he choked while eating his lunch.

The similarities among these three individuals are that while they got medical help for the motor symptoms of their medical conditions, they never got referred or received help for their non-motor symptoms, (including speech, voice, and swallowing problems) until it was too late. What were they waiting for? Time waits for no one.

I am proactive in dealing with both the motor and non-motor symptoms of my Parkinson’s. I cannot afford to wait as I know that early treatment can make a difference in my quality of life and longevity. 

Related to this topic, Mary Spremulli of Voice Aerobics wrote an article about the issues of Parkinson’s voice, speech and swallowing. You can access it at the link below. I highly recommend it.

Speech, Swallowing and Parkinson's and What You Might Be Surprised to Know by Mary Spremulli at:

http://voiceaerobicsdvd.blogspot.com/2015/06/speech-swallowing-and-parkinsons-and.html

So What’s the Good News?

“In Missouri, where I come from, we don't talk about what we do - we just do it. If we talk about it, it's seen as bragging.” Brad Pitt

 

I’m with Brad Pitt on this one. Also, growing up in Missouri, if I wanted to share some accomplishment, an award or good news of my day, I would always preface my sharing by saying “I’m not bragging but…I got an A on my spelling test.”

Even when my Dad was having a healthy day, he would exclaim, “I’m not bragging, but I feel pretty darn good today.” It was as though he was embarrassed to have good health.

None of us wanted to be accused of being a braggard, boastful, or a show-off. We also were afraid that we might jinx it if we shared our good news, worried that the bad news might replace the good news. It was confusing when to speak. So we kept quiet about our good news, bad news and other news.

May Memories of Good News

On May 11, 1974 (41 years ago) I was married to Tom Kelsall. This is a photo of us 41 years later.

 

 On May 5, 1996 (19 years ago) I was diagnosed with Parkinson’s Disease.

On May 4, 2005 (10 years ago) I had my DBS surgery in Sacramento.

In May 2015, Healthline honored me by including me and my blog in their list of The Best Parkinson's Blogs of 2015.

http://www.healthline.com/health-slideshow/best-parkinsons-blogs#1

 

I am grateful for my DBS surgery because it has allowed me to continue with my activities and interests such as Broadway dancing with the Rockyettes, hiking, maintaining my blog, working on my book, and volunteering in the DBS community, including co-founding the Bionic Brigade DBS Support Group.  I am grateful for the kind people (including the Medtronic reps) that I have met along my DBS journey.  Although I have been frustrated that DBS has negatively affected my voice, I am delighted that my current voice is sometimes restored and that I can more frequently be heard and understood.