Parkinson’s at 28 Years: the Good, the Bad, and the UGLY; – Part 2

Before you read further, I want to be upfront that the next section will cover what I consider some of the worst symptoms of my Parkinson’s to date. If you have a weak stomach, maybe you should stop reading now. Everything from here on will be about as unglamorous as it can get. I will also preface this section by saying that every case of Parkinson’s is different - you may, or you MAY NEVER have some of the same symptoms I have.

I have had PD for 28 years now. My goal here is to provide information so the potential symptoms ahead do not blindside you, as I have been. I have always tried to be brutally honest about my illness, and this post will be no different.

Someone once told me that when you have Parkinson’s, if you can eat, sleep, and poop, you are winning the battle. Never have I heard a truer statement, and I will spend the rest of this post explaining why.

The previous section covered the motor symptoms of PD. In my humble opinion, the non-motor symptoms create the most strife in living with this illness, but receive the least amount of press.

In simple terms, motor symptoms tend to be the ones involved with movement (tremors, muscle stiffness, slower movement, etc.; I covered them in Part 1 of this post). These motor symptoms serve as the guise of Parkinson’s. Not to be forgotten, though, are the non-motor symptoms, which arise from the impact Parkinson’s has on the autonomic nervous system (I know I’m throwing in some medical terms, but I want everyone to understand what these words mean, in case your doctor uses the same phrases as well). The autonomic nervous system regulates the organs that handle the daily functions we do not have to think about or control. At the most basic level, the autonomic nervous system comprises internal organs other than the brain and spinal cord: heart, lungs, pancreas, GI tract, bladder, etc. Non-motor symptoms tend to develop when nerves within the body are affected by clumps of protein that develop in people with Parkinson’s.

One of the biggest predictors of whether or not I have a good day is how well I slept the night before. So many different components of PD can affect sleep. For example: stiff muscles, pain, worry, depression, restless legs, acting out my dreams (yes, that one is a real thing with PD -  typically I dream that I am being chased by scary dudes that I don’t know and start yelling for someone to help me, which jolts me wide awake). Sleep has to be a priority so that both my husband and I can get through the next day. When my husband suggested twin beds side-by-side several years ago, it hurt my feelings a bit. Shortly thereafter, my neurologist explained to us that people with PD can have restless leg syndrome at night, which explained why I kicked him so often. The good news is that medication is available to reduce my kicking around. The moral of the story? My husband deserves a good night’s sleep as well.  If sleeping in a bed next to me means he will be more patient when helping to me pick up the 90-day pill supply that I dropped yet AGAIN, I need to recognize that my Parkinson’s is his Parkinson’s as well. Life and marriage are hard enough. Neither of us signed up for this, yet here we are 28 years later, fighting PD as a team instead of fighting with each other.

Next up are my gastrointestinal problems, starting with swallowing and working my way down. Since PD affects all muscles of the body, and muscles are needed to chew and swallow food, it makes sense that as Parkinson’s progresses, these necessary muscles become weak and uncoordinated, thus leading to problems swallowing +/- and/or choking. True story: While on vacation, we were taking a bus to Boston, and I choked on a turkey sandwich. Once the offending piece of sandwich had been dislodged, and I was able to survey my surroundings, I realized the bus had stopped, there were 3 medics present, and a deafening silence hung in the air while everyone watched the events unfold. It was equally terrifying and heart-warming. Time had briefly stopped for a bus full of complete strangers, all of whom were genuinely concerned for my well-being. For the next few months, I subsisted on only smoothies, under the close guidance of a nutritionist.

Moving forward in my GI tract journey comes the stomach, another organ that depends on muscles and nerves to function properly. My stomach empties more slowly than normal, which really only bothers me if I drink carbonated beverages or eat large quantities of food at one sitting. A can of soda or a large meal might sit stagnantly in my stomach, causing me to feel bloated and uncomfortable. When I was still taking oral medications for Parkinson’s, food not moving out of my stomach was a major problem, because Carbidopa-Levodopa needs to reach the small intestine to be absorbed and work properly.

Many people with PD have trouble regulating insulin, a hormone made in the pancreas that regulates blood sugar. I am not diabetic yet, but my body is trying it’s hardest to become

diabetic. I have always tried to maintain a healthy diet and exercise regularly, but now that I know I am at risk of diabetes, I am more diligent about watching how many carbohydrates and sweets I eat. I’ll never be able to give up chocolate, but honestly, I prefer to eat less chocolate than to gorge myself and require an insulin injection. Exercising daily isn’t optional, either. It is a non-negotiable must and built into my daily routine to decrease the risk of developing diabetes

I apologize in advance for what I am about to address next, but….. with more advanced Parkinson’s comes constipation. I’d rather not discuss this symptom all, but the reality is that it is a big problem. For those of you who are old enough to remember The Electric Company on PBS, they had a song about punctuation. I’ve found the word constipation has the same number of syllables and works well in the song. But I digress. I swore I would never talk about my bowels like my grandparents did, yet here I am, following in their footsteps.

The bowels also build up deposits of the PD protein (alpha-synuclein), which slows the transit of waste out of the body. I have been to the urgent care several times for abdominal pain, only to have for the doctor to give me an official diagnosis of ‘an abdomen full of poop.’  From these trips, I have come to discover that Miralax is my friend. I have Miralax in everything. Miralax in water, milk, tea, smoothies, even Miralax on the rocks. The downside to Miralax is knowing the exact amount needed each day to keep food moving out at a controlled rate without being so a frequent that a change of underwear is required

I  also have water to drink beside me at all times to help keep everything soft and easy to

expel. Along with water, I have found exercise helpful to stimulate the bowels a bit, too. If you like prunes, I have had some luck with them as well, but recommend them with a disclaimer. One to two prunes in a smoothie or eaten alone can be quite helpful. If you plan to eat them, you should also have a supply of Extra-Strength Gas-X on hand. When you eat prunes, the days of discreetly passing gas are gone. They have enough fiber to be quite effective, but everyone will know it is you. This is another situation where for which keeping an extra pair of clean underwear is practical advice.