I would like to share with you what I think you need to know in order to live effectively, and if all goes well, overcome the symptoms of PD and restore your health. In determining an appropriate title for this post, I was hesitant to include the number, 18. It’s not a round number, like 10, and it’s big number. I was concerned that it might be overwhelming. But the reality is, PD is a complex condition requiring a comprehensive protocol. You can’t simply treat it with a pill.
Sergio watched quietly from his front deck as a bald eagle soared majestically, high above. Circling on the air currents, it slowly ascended and descended, drifting northwards, then east, without once flapping its powerful wings.
The sight of this magnificent raptor captivated him like a child watching a Disney movie. It reminded him of something he had imagined as a young boy. If he could have one special ability, it would be the natural ability to fly! Yep!
One warm, sunny mid-June day Sergio decided to go for a walk in the forest. He had been to this particular forest many times and felt quite comfortable there. He didn’t consider it special, but he very much enjoyed spending time amongst nature. It was a short drive from his house, just outside of town, a forest frequented by hikers and avid outdoors people.
As a person experiencing the symptoms of PD, I have learned through direct experience that it is extremely important to continually stimulate the body and the mind upon waking and throughout the day!
One warm summer day when Sergio was ten years old he reckons, maybe eleven, he went to the beach with a few friends to enjoy a swim. The beach was a short walk from Sergio’s house and they went there often. In the shallow waters at the far end of beach where the forest begins, they discovered a bunch of fresh water clam shells. The shells had long since been abandonned by the clams, which only have a lifespan of about six months, so they were safe to collect.
Like a lot of kids, growing up, Sergio had some idols! That was okay people told him because positive role models can be quite healthy for a child’s development. Because he loved sports and music, not surprisingly, his idols were athletes and musicians! He wonders what made him think of this walking through the forest as he was on this warm spring day!
Quite often you will hear people say that they are suffering from Parkinson’s … but are we really suffering? Quite often, our perception of suffering is just that, a perception.
For example, a person experiencing loss of balance as one of the symptoms of PD might describe themselves as suffering, but a person experiencing loss of balance due to consuming a few too many drinks at a party might consider themselves to be having a blast.
Gazing out his office window Sergio recalls with fondness and reverence, his grandmother’s birdfeeder. It was the focal point of much of the family’s amusement, conversation and joy! It was also the center of a considerable amount of the education that grandma and grandpa doled out to their always welcome visitors!
The feeder attracted a wide variety of birds, big and small, the most fascinating of which, pretty much everyone agreed, was the chickadee. These tiny, delicate creatures who somehow managed to weather the extreme winter cold and harsh conditions, were quite often the family’s main attraction.
Okay, it’s time for me to get in the game! Lot’s of people all over the world are reaching out in whatever way they can to help others during this time of coronavirus crisis. I would like to contribute by offering something I love to do … write stories. I was already planning to do this for people living with the symptoms of Parkinson’s Disease, but why not offer to a wider audience.
So, here goes!
The other night, I watched a movie called, Sergio. It was about Brazilian UN diplomat, Sergio Vieira de Mello, who was killed during a suicide bomb attack on the Canal hotel in Baghdad, Iraq in 2003. The movie was intense, dramatic and engaging. I really got into it!
I’m happy to be back blogging after a short hiatus during which my attention was mainly focused on writing my latest book [The Kid] which I am very excited about and which is still a ways from completion.
Living with the symptoms of Parkinson’s, there is never a dull moment, although, quite frankly, I wouldn’t mind a little mundane, same-old, same-old … as opposed to the constant flow of challenges that seem to come my way. Lately, these challenges have had much to do with the medication I’m taking. As Homer Simpson might say, “stupid medication!”
I started taking medication [Sinemet] in December 2018, this after experiencing the symptoms of PD for sixteen years, medication free. For the first ten months … taking five tablets a day [2 at 9 AM, 1.5 at 3 PM and 1.5 at 10 PM] … I did not experience an ‘on-off’ cycle. Then abruptly, in the first week of November last year, I suddenly started experiencing it.
I suspect the change was triggered by a very stressful week at the end of October during which I was in a constant state of worry and anxiety.
At first, the change was barely noticeable … but it was noticeable. Gradually, over time it became more noticeable and more intense, particularly during the wearing-off period. During this period, I quite often felt extremely jittery … and still do.
I take my morning dosage at 9 AM. It kicks in around 9:30 AM and lasts until between noon and 1 PM. I take my afternoon dosage at 3 PM, which kicks in around 3:30 PM and lasts until 5 PM to 6 PM. My nighttime dosage which I take at 10 PM, usually kicks in after I go to bed at 11 PM and wears off sometime during the night.
During the off times, my symptoms are considerably worse, particularly balance, freezing and stiff gate. At times I can be very unsteady on my feet. I also have much greater difficulty focusing. I can literally re-watch a movie and half of it is new to me.
In order to deal with the situation, I considered three options:
Option #1, take Sinemet more frequently [four or five times a day] at the same or an increased daily dosage. The downside of this, is that it leaves me more prone to side-effects, particularly dyskinesia, and it makes me more dependent on the meds, at a time when I’m trying to reduce my dependency [my goal is still to get off meds altogether]. It would also make eating a challenge as it is best to take the meds at least a half an hour before eating and an hour and a half after eating, particularly if the meal contains protein.
Option #2, start taking a ‘bridge’ medication [a separate medication taken during the ‘off’ periods]. The downside of this is pretty much the same as the downside of Option 1. It increases my risk of experiencing side-effects while making me more dependent on medication.
Option #3, deal with the ‘off’ periods, naturally [by meditating, exercising, practicing qigong, spending time in the forest and taking CBD oil].
I have been opposed to taking medication since receiving my diagnosis in 2008 and even though I am currently taking Sinemet, my goal is still to get off medication entirely and recover my health using a natural protocol, so Options 1 and 2 are not really viable options.
This leaves me with Option 3 … the natural approach! Of the three options, this is certainly the one I prefer, but quite frankly, at this point, I cannot say with certainty that it helps with my ‘off’ time symptoms. It seems to, but in order to quantify it, I would have to do nothing for several days, then implement my protocol for several days and see if there is a difference. What I can tell you at this point is that when I am meditating, when I’m practicing qigong, when I’m in the forest and when I’m doing certain vigorous exercises, I feel better during ‘off’ times, but the feeling only lasts while I’m doing it … which is better than nothing. It’s quite possible that doing these natural protocols is keeping things from getting worse, but again, at this point I’m not certain and not sure if I can quantify it.
For now, I’m going to focus on the bigger picture, which is to stay positive and upbeat, while doing everything I can to eliminate the fear, worry and anxiety, and dissolve the detrimental beliefs that are keeping me stuck in this health condition … which means diligently completing the elements of my daily regimen, remaining optimistic and accepting the situation. I will also cherish, appreciate and take advantage of the period of time, twice daily, when the medication is ‘on.’