Parkinson's Shapes My Day

A Nap A Day Helps Keep PD Away

I used to be a free floating soul taking each day as it came and going with whatever was happening. Parkinson’s changed that. In order to deal with PD I plan my days so they are structured and follow a regular pattern: wake up, eat breakfast, nap, take pill, exercise, eat lunch, maybe nap, walk, snack, exercise, take pill, eat dinner, walk, take pill, sleep. That is, unless I have the PD miseries in which case all bets are off and I go into survival mode and do anything I can to get through the day.

On okay days I structure the day by how I take my meds. One yellow twice a day and one blue once. The yellow is taken two hours after eating protein and one hour before. It’s best to take the blue at night, 45 minutes before bed. Lets see if

Experiencing Parkinson's

Parkinson’s is a life sentence of increasingly progressive punishment without chance of parole. You can see the best doctors, they cannot cure you, take the newest meds, they will only temporarily manage some of your symptoms, exercise day and night, it will not stop the progression of the disease. There is no miracle cure. People with Parkinson’s suffer more as the disease progresses. It is not something you can get used to because the symptoms change and develop over time. The disease will continue to progress and you will continue to get worse. At some point you will run out of medical options for dealing with the disease. At that point you are on your own and how you experience the disease will determine what you do and how well you survive. That Parkinson’s is miserable is a fact. I have to accept that I may never feel physically well again. What I do with that, how I experience it, could determine the quality of the rest of my life. Medical facts can be tempered by individual experience. The reality is that I have PD. How I experience it is up to me.

Disease is not objective. It is experienced. Parkinson’s more so than others. PD symptoms are different for each person and each symptom affects each of us uniquely. Tremors are the most common and noticeable symptom. A friend with PD is very happy that she doesn’t shake but has Parkinson’s with Lewy Body Dementia and is loosing her mind without knowing it. Factually she has Parkinson’s but she doesn’t consciously experience it. 

Another friend has had PD for more than 15 years. He has noticeable tremors and balance problems that lead to falls. Parts of his body are twisted (dystonia). He believes that he has the disease under control and is basically ok and not doing too badly. You might think his belief is not based on fact but experience is not objective. 

I was diagnosed in 2012 and the physical symptoms of tremors and lack of balance are suddenly really kicking in. I had the PD miseries the other day, heavy on the symptoms and an acute dose of anxiety. It was really getting to me. Then some friends came over, took my mind off it and my experience changed. Some people are not bothered by the fact that they shake. Others are. Each person experiences the disease differently. Facts fade. How we experience our experience becomes our reality.

When I first experienced symptoms I went to a neurologist. I shook a little but had been shaking all my life and so entered his office feeling good as a healthy human being and came out labeled as a neurological disease called Parkinson’s. He prescribed meds that may or may not be helping me. It is hard for me to be objective due to the misery of the disease. My mental attitude was good. I remember thinking that I could handle this if it doesn’t get worse. Little did I know. Of course it got worse. Then the PD misery began and I spent more and more time thinking about PD. The more I thought about it, the more I became defined by the disease. It was as if an unwelcome guest had taken residence in my body. 

Eventually I met other people with PD and became part of the Parkinson’s community. Meeting other people with the disease and becoming active in the PD community has been as beneficial to me as Sinemet. We have an in common shared experience. By taking part in the life of the community I stopped being a diagnosis and became a person again. We experience PD and suffer individually. The PD community helps alleviate some of the misery. Some days are okay and some are bad. That’s just the way it is but how we experience it its up to us. Can we just say that’s life. It is neither fair nor not fair. Life just is or isn’t. So enjoy it, experience it, live it as best you can while you can. Mental attitude is everything.

Parkinson's Is A Mental Disease.

The longer I live with it, the more I am convinced that Parkinson’s is a mental disease even though it is defined by a set of physical symptoms. PD can be caused by genetics, the environment, or a combination of genetics and the environment. It destroys dopamine producing cells in the brain which can cause four main physical symptoms and a host of “minor” ones but as time goes by the mental aspects of the disease become more important. All emotions, positive or negative, love and pleasure or disappointment and especially stress strongly affect my physical symptoms as well as how I feel. PD meds may also have a strong psychological affect on a person and can cause compulsive gambling, strong sexual urges, and binge shopping. Parkinson’s is a long term progressively debilitating disease that over time takes a great toll on the emotions and so PD becomes a fight for control of a persons mind and emotional well being.

Stress leads to a worsening of symptoms. The Michael J. Fox website states that, “Chronic stress will increase the extent of brain cell loss in PD-associated brain structures. There is ample evidence that PD symptoms worsen during times of stress.” Parkinson’s is a neurological disease and stress and strong emotions make neurological symptoms worse. Some PD people I know trace the onset of symptoms to a specific stressful event. I remember the incident where my symptoms first kicked in although I didn’t know at the time that it was PD.

I was waiting in line in a grocery store and someone cut in front of me. When I said something they became aggressive and I stupidly responded. After the incident my body began to shake and I’ve been shaking ever since. All strong emotions have a noticeable affect on my symptoms. Love and hate, both the same to Parkinson’s, they light up my brain and make me shake.

Then there are the possible negative psychological side effects of the PD meds and the lawsuits settled for millions of dollars. Add impulse-control disorders such as hyper sexuality, compulsive gambling, and impulse shopping that can be caused by the meds to the list of possible non-motor symptoms. No one wins the battle with the physical symptoms and so it is not surprising that many people with PD suffer with depression to some degree. In fact, depression is so prevalent in PD that doctors now believe that depression may actually be a symptom of PD possibly rooted in the way the disease affects the brain. 

I seem to be the best when I am active and engaged with people. At times I forget that I have PD and sometimes PD forgets it has me. Don’t hide and suffer alone. Get involved with the Parkinson’s community. Be with people. Being with people takes my mind off the disease. Gives me mental rest. Respite. We experience PD and suffer individually. Community helps alleviate some of the misery but PD really is a fight for the control of the mind and emotions. A healthy mind is the greatest asset in fighting the disease. I accept that I am probably going to lose the physical battle with PD even though I exercise every day but I am not giving up the fight for my mind and how I feel. Mental attitude is everything so don’t hesitate to get professional help if you need it.

Parkinson's Ass And Legs

Since getting PD, a different me inhabits me that takes getting used to. Sometimes you can only laugh at it and what it does. Take my butt. Not the but that is a conjunction that connects two clauses to form a sentence but the butt that is my ass, the part of the body I sit on and in sitting lies the problem. My butt is fine with sitting but it forgot how to get up. I relax in a chair, read a good book or magazine, and then try to stand and my butt acts like an immoveable weight glued to the chair. If the chair is soft and I sink in so my butt is lower than my knees forget about getting up.

I’ve learned to do side reverse butt swings to gain the momentum to get up. I call it the PDHP, the Parkinson’s Hokey Pokey. Swing the right butt cheek

Parkinson's Fall Prevention

It happened agin. Parkinson’s is bad enough as it is. Falling makes it dangerous. One minute I was standing. The next I was on the floor on my back. Luckily I wasn’t hurt badly, just shaken and a little stiff but a number of PD people I know have recently suffered fall related injuries. What counts as a fall? Does leaning back against a wall to prevent yourself from falling or plopping down onto a chair or bed to stop yourself from hitting the floor? Does a fall require a trip to the ground often resulting in injury? A friend of mine says no bruise, no blood, no break, no ground means no fall. It sounds good but I disagree. A fall is any unintentional change in position where you end up on a lower level or the ground. Fall backs are falls and more important they are warnings that if listened to can help prevent injuries. Face it, you would have fallen if the wall or chair had not been there to catch you. Admitting that you have balance problems and determining to do something about it is the first step in fall prevention.

Balance is the ability to maintain the body’s center of mass over its base of support. It is dependent on good posture and body alignment, good vision, and a brain that works well. Balance requires the brain to integrate and respond to many sources of information received continuously and simultaneously from the rest of the body while moving and when standing still. Wonderful when it works but balance is a problem for most people with PD.

Most people with PD have balance problems and about 70% fall. Two thirds have recurring falls, and fall rates are twice that of same age people who do not have PD. Falls are the number one cause of injury and death from injury among people age 65 and older. In 2015 I posted another blog about falling. It is my most widely read post, the one with the most hits. At that time I wrote to my neurologist and asked “My balance is slowly getting worse over time. I exercise daily, do balance specific exercises, and Tai Chi. Is there anything else I can do?” He replied. “It is difficult to treat balance with medication. It works best for stiffness and tremor. The exercises are the best way to deal with balance so please continue with them,” In other words, nothing he can do and good luck to you. Come on doc, that is not good enough. Falling can be prevented. There are things that can be done to prevent or at least reduce falling.

There are many web sites that have fall prevention and balance exercise videos and a number of web sites that explain how to prevent falls and improve balance so I will only mention a few things. Don’t wait until you fall. Admitting you have a problem is the first step in prevention. Start now, even if you are not yet having balance problems. Fighting PD is about doing what you can to delay the progression of the disease. Safeguard your home environment for fall safety. Darkness promotes falling. Install night lights, grab bars, and no skid rugs throughout your house. Do balance and fall prevention exercises. Tai Chi is particularly recommended to improve balance as is a program consisting of balance exercises, light stretching, strength and gait exercises. It is also important to learn how to best protect yourself when you do fall.

Some things to consider. PD meds may make you unstable. Let your doctor know if you think your meds are making you lose your balance. The right medicine regime taken correctly is important. Try to maintain a healthy mindset. Depressed people have a greater incidence of falling. I know it’s hard but try to be positive and don’t unnecessarily think you are going to fall. You will fall if you think you are going to. Prepare your home environment for safety and ease of use. Use assistive devices. I just bought the best looking quad cane I could find. Calcium.

Be careful, be careful, be careful. Learn what not to do as well as what to do and learn how to coexist with PD. Don’t ignore or deny the problems PD is causing you. So much of surviving Parkinson’s is up to you.