Possibilities with Parkinson's

A Fresh Look

Dr. C

• Editorial: Atmosphere Press
• Año: 2021
• ISBN:
  9781637527931
• Edición: 1
• Categoría: Medicine
• Categoría: Diseases & Allergies

Possibilities with Parkinson's offer a fresh look on how to live better with this challenging disease. Easy to read, filled with useful tips and insights, and grounded in both science and practical application.Here is what readers have said:

"You eloquently and precisely describe my personal situation. Again, thank you for putting into words the things I've been feeling for a long time." F.B.

"Thank you for the honesty and vulnerability. You do a great job of building empathy. It speaks to all of us with progressive diseases trying to frustratingly adapt to an ever new 'normal.' Your courage shines through. Your words will touch a lot of readers." M.L.

"Thank you Dr. C. for all your insightful and thought-provoking writings" J.G.

"I felt the need to express how impactful the discovery of your writing has been in my life. I count it as one of my 'somethings' to be grateful for. Your words have served as a beacon of hope in an otherwise turbulent, lonely sea." S.H.

Those with Parkinson's, and those who are caregivers and human service professionals, will benefit from reading this book.The book truly offers a fresh look: one filled with possibility.

Computer Gaming as Therapy for Parkinson’s Disease¹⁵

The brain is a plastic organ and it continually reshapes itself in response to the stimuli it receives and how that stimuli is processed. That old saying “use it or lose it” applies even in the face of a challenging disease like Parkinson’s. Computer gaming can help with brain training, exercising the brain to slow the progression of the disease.

Recent research on video gaming and treatment for PD shows it can help with physical issues such as gait and balance.¹⁶ There is a certain amount of brain, eye, and hand coordination in video gaming. The key to successful use of computer gaming is to find the right match of game to person and level of difficulty. The game must be challenging, but not too much to be discouraging for a new player. It also must be rewarding and enjoyable (there is that dopamine factor to consider). There is a “sweet spot” in gaming where, like Goldilocks, you find just the right fit. I find this in games where I can play it at various levels. Not only can you find a comfortable level for your own style of playing, but you can also change the level depending on whether it is a good day or a bad day with Parkinson’s.

I look for video games that offer exercise for geographical memory, eye-hand coordination, speech, and problem solving (scenario looping) at a variety of levels. It is also a place for the Grouch to go when T.O.O.T.S. needs to be applied and where impulsivity can be applied with fewer consequences than in the real world. Have the urge to buy? Then earn virtual money and buy virtual things. Have some frustration? Then enter the video game world and work it out on some monsters. Controlling my pain is a difficult problem for me. Spending time in the virtual world can help. Want a sense of accomplishment? Help build a community while also making yourself a strong avatar. It is a place where you can find that “sweet spot” while contributing to building a support community.

It may seem counterintuitive to say that fighting monsters or building a virtual community is relaxing, but that is what I experience. Conversations I have had with others indicate that this is a common experience. I often have clarity of mind while playing, and some of my ideas for writing pop up in the middle of the game. There is the added benefit of meeting new challenges. Keeping the brain in shape is one way to help stave off dementia and the effects of aging. I enjoy problem-solving, so the games that offer that to me are much more enjoyable. In a goal-driven game, I find that new and novel situations challenge my thinking. There is the dopamine effect that happens when I’m successful within a game that offers many ways to experience success. Can’t get much better than this – having good clean fun and slowing down the progression of PD!

One more note – I do use adaptive equipment to help me play the game. I have a large track ball on my dominant hand and a keypad with a thumb joystick on my other hand. It takes a little while to learn how to use this equipment, but the reward is a greater success rate inside the virtual world. I also have a headset with a microphone. There is plenty of opportunity to speak with others within the community of players. However, addiction to gaming can be a problem, and too much time gaming can have negative consequences. One can enjoy the challenge, but be aware of any potential impulsivity issues you may be facing.

The Pacman Cometh – Parkinson’s Disease Gobbles up Time

It used to be that I could put long hours into just about anything I tackled – research, counseling, painting, writing, and gardening. But PD gobbles up time, like the video game Pacman gobbling up dots as it chases the ghosts. Even though I am retired, there is less free time to use to accomplish personal goals because every day the Parkinson’s-Pacman cometh.

Here is a list of the ways the PD-Pacman gobbles up my time:

- Bad days and “off periods” require a commitment of time to manage.

- Medical appointments and travel to them.

- Pain and fatigue, and more rest needed to help manage them.

- Any illness, like the flu or colds, is more intense and takes more time get well.

- Heightened emotions along with stress of any kind, good or bad, requires more time to manage.

- The overall rehabilitation plan to address all the issues associated with PD, which I have mentioned in past essays, takes quite a bit of time.

Many evenings, as I get to the end of the day, it feels like nothing was accomplished. It’s a plaguing voice and annoying – and not just to me. Mrs. Dr. C. has heard it so many times that she is now responding, “I’m going to have that on your tombstone – ‘Here lies Dr. C. He died wishing he got more done in his life.’”

There are tons of magazine articles and books on time management. But PD has its own special problems that need to be considered when seeking to apply time management strategies. Think of time like money – you only have so much you can spend each month. You can’t get back what the PD-Pacman gobbles up, although you can decrease what the Pacman consumes by implementing a personally tailored rehabilitation plan. After that, it is important to cherish the time that is available and to allocate it in a meaningful and constructive fashion.

Misdirected attention is the Pacman of PD. It consumes time in two ways. First, by getting us to get off task; second, due to the set-shifting problems connected to scenario looping, we can end up staying off task. It may even feel quite difficult to get back on track. After physical exercise and good medical care, mental attentiveness is the third most important treatment focal point for early PD folks. Like physical exercise, mental attentiveness needs to be practiced daily, which is one of the reasons for my recommending virtual reality game playing.

Capitalize on using the good days, and the good hours in a day, when they occur. Without being fierce about it, jump into those good days and focus on accomplishing tasks which have rich meaning and purpose. There are times during the illness where the mind is more lucid. Use those times wisely with directed attention. Be patient and allow those times to arrive. Be flexible on the mild days. Get done what you can and then be willing to rest. On the bad days, and especially the ugly days, be willing to let it go. As boring as it seems, rest is needed to limit the extent of the bad days.

With these suggestions in place, make a schedule. Make broad goals and then weekly goals. Use those good times during the week to apply yourself, with mental attentiveness, to those goals. This is a little bit different than saying, “On Monday I will do this, and Tuesday, that.” Instead, it is a flexible schedule which says, “I would like to get this done by the end of the week.” Then, when the good times, the lucid times, arrive, you get that weekly goal done.

Finally – keeping track of appointments on a calendar (on paper, computer, and cell phone) is important. I find that sometimes I just can’t get to an appointment. The drive is too much to endure, my body is rebelling, or the weather is bad. Lately, the precautions for the pandemic are impacting provider availability and my willingness to expose myself in a large medical institution. For those of you who can access telehealth, I encourage that. Keeping providers up to date on your physical and mental status cannot be overstated.

A New Year’s Resolution: Quiet Down the Old Tapes

In the previous essay on time management, I mentioned a nagging inner voice saying, “You did not get enough done today.” This is tied to an old tape, inner dialog left by the voices of parents and childhood teachers, that said, “You are never going to amount to anything.” The inner drive to continually produce is an effort on my part to quiet down this old tape. But with PD, and getting older, the cost of this nagging inner dialog has become too much. An interesting management technique is proposed by author Kara Brown to suppress these memories: “To learn more about how to stop past thoughts, researchers looked at three modes of eliminating memories. They found that while replacing thoughts and clearing the mind removes memories quickly, suppressing memories is better at thoroughly removing them.”¹⁷

The inner drive to always be doing something, to produce something, is also tied to a sense of identity. The holiday times are filled with meeting friends and family where the conversation often inquires, “What have you been doing?” “Doing” is connected to how we describe ourselves to others and our self-identity. But, as mentioned in the time management essay, PD consumes the time that could be used for doing those things that are connected to self-identity. The sense of self begins to shift, and the old tapes, once silenced by a healthy productive life, are now emboldened by the disease.

Everyone has old tapes tied to memories, some more intense than others. My New Year’s resolutions usually focus on the most annoying one for me. Perhaps it has become that way because PD makes it harder to find the self I once knew when I did not grapple with the disease. Since I can’t find, feel, know, or sense that old self in the same way, there is an emptiness. Part of how I knew myself seems absent, and that emptiness gets filled with the noise from the old tapes. I can’t use “doing” as a functional way to address this anymore, so it is my New Year’s resolution to find a better way.

The search for self amid PD is a winding path through the forest of symptoms and steps taken to embrace a high quality of life. It is a forest path filled with obstacles, and it can become one’s negative self-identity. But there is difference between saying, “There stands that Parkinson’s guy” and saying, “There stands Dr. C. – he has Parkinson’s.” It may seem like a subtle difference, but it is important because linking one’s self-identity too closely with the disease also creates a link to negative self-dialog, like “You are a diseased person.” This then raises the volume of the old tape.

The disease should never become our self-identity, but given how much time is spent and how much conversation is shared focusing on the disease, it is difficult to not become the disease. The cognitive aspects of PD make it harder to stay in touch with that healthy self-identity. Who am I? How do others view me now that I have this disease? Answers to these questions help me to keep in touch with a self-identity I have developed and strengthened over five decades. Even though I am trying to replace negative internal dialog with positive internal dialog as a regular practice, it just seems a bit harder these days. So, my New Year’s resolutions are sent to me, Dr. C., struggling to sit with a healthy sense of self. It is a resolution wish sent along with gentleness. It is sent with hope, kindness, and an infinite well of patience.

Looking for Lightness of Being – Meditation and Parkinson’s Disease

Living with PD is a daily battle with the loss of both motor and cognitive functions. Effort must be put into a plan of action that reduces the impact of the disease – a rehabilitation plan. This effort is daily, sometimes hourly, and it can be exhausting. Living with PD is like carrying a large backpack of rocks. It is at times a crushing burden and overwhelming. Sometimes I can carry it – other times the pack shifts and slips, throwing off my mental and emotional balance. There needs to be balance in my life so that the work I do on my rehab plan does not consume me. I must spend time looking for lightness of being to balance out the heavy PD burden. This can be done through a regular practice of meditation.

There are many ways to practice meditation: sit and listen to calming music, sit and gaze at a fireplace, practice Tai Chi, or exercise with rhythmic breathing. These are all aimed at relieving stress, easing the burdens of life, and entering the quiet mind. It is within the quiet mind that lightness of being can be experienced to calm the noise in both body and mind. There are books providing instructions on how to do this, but few deal directly with implementing them for PD.

Practicing meditation with PD presents some unique challenges. The meditation practice starts with calming the body, and this is the first obstacle that PD makes more difficult.

Repetitive motor activities like cycling, T...