Without a doubt, the most challenging part of my day is the twice daily medication wear-off period. The first one, after morning meds lasts for approximately three hours, while the second, lasts for an hour to an hour and a half. During this time, I experience intense trembling, unsteadiness on my feet and extreme freezing.
Now that I better understand how dopamine works and how levodopa/carbidopa works, I have resigned myself to coping with it as best I can. Dopamine always wants to be in homeostasis, which means it wants to be at a constant, baseline, level. So, when you get a dopamine lift, either naturally or through the medication, dopamine levels will always fall [crash] below baseline in order to return to homeostasis. Otherwise, you would end up with too much dopamine, which would lead to dyskinesia [involuntary movements] or hallucinations or schizophrenia.
The medical community deals with this wear-off effect by prescribing more medication: more levodopa or a time release levodopa or a dopamine agonist or a dopamine reuptake inhibitor. In my view, this not the best approach, because it is prolonging the inevitable crash … or leading to dyskinesia.
I have accepted that the best approach for me … for now … is to let it run its course and do my best to cope with it. I will go for a power-walk or bike ride, spend time in nature, sit by the lake, meditate, practice qigong or yoga nidra, listen to music or read.
After Mari returns home from Europe next week, I plan to wean off meds entirely. Quite frankly, I don’t know if it’s doable, but I’m going to give it a try.
Standing up from a sitting position can occasionally be challenging when my meds are off, especially when I’m feeling stressed. I recently discovered a helpful technique for getting out of a chair. Before attempting to stand, I throw my arms up in the air and shoot out my fingers out. I call this, exploding hands. I do the technique three times before attempting to stand.
The reason this technique is effective, is because any type of movement stimulates a dopamine release. This dopamine release is then used by the muscles involved in standing.
I will also use this technique to facilitate rolling over in bed and getting out of bed in the morning. I also find it helpful in situations where I am experiencing bradykinesia [slowness of movement].
I also discovered a helpful technique for eating. Sometimes my hands are a little shakey when I’m eating, so rather than lift my spoon or fork straight up to my mouth from the plate or bowl … which frequently leads to spillage [and frustration] … I will lift it away from me, then back towards me, zig-zagging my way up to my mouth.
For me, these techniques are empowering. Give them a try and let me know if you found them helpful.
I read somewhere years ago that an adrenalin rush can temporarily suppress PD symptoms. I recently experienced this first-hand.
I was at my daughter, Tahni’s, for my granddaughter’s birthday dinner. My eldest daughter, Jenna, and her family were also there with their newborn, Kinley, just two weeks old. Tahni’s dog, Doaks, and Jenna’s dog, Kiya, were also with us.
We were sitting out on the back deck after dinner … my meds were off at this point … when the two dogs started barking near the utility shed at the front corner of the yard. At first, we weren’t concerned, thinking they were barking at the neighbor’s dog. But when Doaks started backing up at the same time he was barking, we knew something was up. Sure enough, moments later, a porcupine came out from behind the shed, running along the fence towards the back of the yard.
Now, if you’re not familiar with porcupines, they are similar to a beaver, but rather than having brown fur, flat tails and a penchant for building dams, they are covered with quills that have barbed tips. These quills are extremely difficult to remove once they’ve penetrated the skin and they can be fatal to a dog that attempts to bite a porcupine. So this was no trivial matter.
Doaks went after it immediately, so I jumped out of my chair, barefooted, and bolted across the yard, running full out, with my daughter right behind me. Both of us were yelling at the top of our lungs for the dogs to get away from it. Porcupine and dog disappeared into a thicket with me right behind them trying to grab the dog. I even threw a kick at him trying to get him away from the porcupine. Both animals came out of the thicket and my daughter was finally able to grab Doaks just as the porcupine disappeared into the bush in the back corner of the yard.
With both dogs in hand, we went back over to the deck and sat down to collect our collective breaths. I immediately realized the significance of temporary remission I had just experienced. So had everyone else. For a moment, they thought my meds were on. We were all quite amazed at how my symptoms could be suppressed like that by an adrenalin rush. We talked about it for a few minutes before the discussion turned to the porcupine and how grateful we were that the dogs were unharmed.
All-in-all, it was an interesting experience. What makes this adrenalin phenomenon more interesting is that adrenalin is actually synthesized from dopamine, and according to Andrew Huberman, an adrenalin release is always accompanied by a dopamine release. This might explain why I experienced vigorous trembling for the next half hour, as my dopamine levels crashed while they returned to homeostasis.
It is truly amazing what the human body is capable of in a crisis. It is truly amazing what the human body is capable of in the right circumstances. If my body is capable of being symptom-free … even if only temporarily … in a crisis situation, this is evidence that it has the potential to be symptom-free, permanently, under normal circumstances. If an adrenalin rush can overide the fear-based tension that is keeping my body from moving ‘normally’, then surely the ‘right’ mental state can free my body to function normally all the time.
In an earlier post, I wrote about temporary remissions I have experienced. The first occurred in the summer of 2014 after a trip to Estonia. It lasted four days. I woke up one morning and realized that I didn’t have any symptoms. I immediately grabbed my guitar and started strumming the chords to the Rolling Stones’ Tumbling Dice, and I could strum them the way I used to. I was ecstatic!
In the last year and a half, I have experienced five more remissions lasting from five to thirty minutes. Four of them occurred after meditating and the fifth one happened after sitting quietly observing my surroundings.
I now understand how I experienced these remissions. Simply put, I was in the right state of mind. I wasn’t fretting about the past, resisting the present, or worrying about the future. I was in a state of cheerful enthusiasm and acceptance.
This state of mind activated my parasympathetic [calm] nervous system, stimulating a sufficient release of dopamine [and other feel-good neurotransmitters and hormones] to temporarily neutralize the symptoms I experience.
Now, my challenge is to use this awareness to stimulate the awakening of the dopamine producing neurons and neural pathways in order to raise my baseline dopamine and create a lasting state of remission. Contrary to the medical profession’s assertion that the neurons that produce dopamine have died off, I believe they have been suppressed from years of being in a chronic fight/flight/freeze state. These temporary remissions prove it. Just like muscle memory enables us to ride a bicycle after years of inactivity, by reawakening the neurons and neural pathways that were created when we learned how to ride a bike, so too can our dopamine producing neurons. We can do it by recreating the joy we felt as an infant when we first learned to stand unaided, walk across a room to a smiling parent’s outstretched hands or run joyfully from one end of the house to the other.
Whatever I do to recreate this feeling must be genuine. Given the state of affairs, both in Canada and globally, this could be challenging. But it’s doable.
In part, it will involve something I’ve already been addressing … changing my personality. I have a propensity to worry about things, including things over which I have no control. If I want to unsuppress these neurons I must be in the right mindset. I can’t be fretting about anything.
This will give me an opportunity to really learn to trust that everything is unfolding the way it is meant to, including everything in my life and the country I live in.
As if to validate my theory, when I returned from a bicycle ride while I was in the midst of writing this post, I was virtually symptom-free for fifteen minutes. Evidently, I was in the right mindset.
Dopamine is a neurotransmitter [chemical messenger] produced in the substantia nigra section of the mid-brain. It is involved with movement, motivation, accomplishment, reward and celebration. Whenever you do something that feels good, you get a dopamine release. Similarly, working towards and accomplishing something meaningful stimulates a release of dopamine.
A deficiency of dopamine is at the root of the symptoms of Parkinson’ Disease.
According to Andrew Huberman, neuroscientist and professor at Stanford University, everyone has a baseline level of dopamine that is being produced continually to support basic body functions. It varies from person to person according to our personality. The more kind, enthusiastic, optimistic, cheerful, loving, easy-going and ambitious we are, the higher will be our baseline level of dopamine. It’s why certain people are more energetic than others … they have a higher baseline dopamine. Conversely, the more uptight and pessimistic we are, the lower will be our baseline dopamine.
Anything that makes you feel good, rewards you by stimulating a temporary release of dopamine above baseline [It’s why dopamine is described as a feel-good neurotransmitter].
Movement and exercise is critical to living effectively with the symptoms of Parkinson’s, because it stimulates the release of dopamine … it takes you out of the fight/flight state. But here’s the thing. Dopamine’s natural tendency is to be in homeostasis, so any increase in dopamine is followed by a corresponding crash … where dopamine levels fall temporarily below baseline. That’s why I feel good when I power-walk, but not so good soon afterwards.
The reason dopamine wants to be in homeostasis, is because too much of it creates other health issues, including, dyskinesea [uncontrolled movements], hallucinations and schizophrenia.
I realized recently that if I exercise while on meds, I am going to experience a double crash … a crash from the meds and a crash from exercising. There is no getting around it.
After learning how dopamine works, I am convinced that taking medication is not the best approach, and here is why:
Let’s say you begin by taking levadopa, perhaps, at a dosage rate of 200 mg, three times a day. Each dosage is followed by the inevitable crash, so you go back to see your neurologist, who, rather than explain to you how dopamine works and how the medication works, suggests that you take more levadopa, or perhaps a time-release version, or a dopamine agonist, or a reuptake inhibitor, all of which are intended to keep you in a constant elevated dopamine state. Eventually, because there is so much dopamine in your system, you begin to develop dyskinesia, so the neurologist prescribes amantadine. Of course, this medication strategy does nothing to address the root cause of the symptoms you are experiencing, which is fear/stress/worry/anxiety, and does nothing to slow the progression of the condition.
So, if you take a time release medication such as Madopar, you are simply delaying the inevitable crash. The same is true for the ‘in-between’ meds, such as dopamine agonists, like Ropinirole. A dopamine agonist is a compound that activates dopamine receptors thereby mimicking dopamine and thus providing relief from symptoms relating to low dopamine. The same is also true for dopamine reuptake inhibitors, which block the enzymes that inactivate dopamine.
I suspect this multiple medication strategy is why so many people have difficulty sleeping. They have been medicating all day with multiple medications, and the only time dopamine can return to homeostasis [crash] is at night.
The key then, is, rather than take medication, focus on increasing baseline dopamine, and the most effective way to accomplish that is to live life with enthusiasm, love and trust. And a simple, but effective, way to accomplish this is to live in gratitude.
I also find placing my attention in the present moment through meditation and simply looking around and observing my surroundings, to be very effective.
Having a spiritual outlook and understanding that everything has a purpose also helps me immensely.
I suspect, that in addition to the personality traits listed above that affect our baseline dopamine levels, the amount of unresolved emotional pain we are holding onto also plays a role. If we are holding onto shame, guilt, bitterness and self-loathing, it is bound to be a factor, so emotional healing and learning to be at peace with our past would also be helpful. For me, healing emotional pain begins with forgiveness. I forgive myself for my wrong doings and others for treating me unkind based on the understanding that people do unkind, dumbass things when they grow up feeling unloved and because they don’t feel good about themselves and they are spiritually unconscious. I know that people are doing the best they can based on what they have learned and experienced.
I’m in limbo, caught between two opposing desires … the desire to get off meds and the desire to be able to function on a day-to-day basis.
A year ago, I decided to wean off meds completely. At the time, I was taking 4 1/2 tabs [450 mg] of levodopa/carbidopa a day. I was taking no other meds. I managed to wean down to three tabs a day before a series of events [including a couple of trips down south to visit my kids] caused me to put things on hold. Then in January of this year, a growth on my arm turned out to be melanoma and I spent the next five months tending to it and making sure there were no other cancer cells active in my body. I’m pleased to say that I am clear.
Now I’m ready to begin the weaning-off process again.
My predicament, as I said at the beginning, is that I want to be able to function somewhat normally, and right now, my off-meds symptoms are quite debilitating. It’s a challenge for me to perform any kind of task, including sitting here dictating this post.
To support my effort to wean off the meds, I have been focusing on raising my baseline dopamine levels by living with loving, cheerful enthusiasm … mainly through living in gratitude. Even with this focused effort, I constantly find myself fretting and worrying about things … old habits die hard.
People ask me why I want to get off meds so badly … why don’t I just take more meds to minimize the symptoms I experience? My answer is, that I believe meds are not the right approach to dealing with the symptoms of Parkinson’s, particularly when you consider how dopamine functions. Dopamine wants to be in homeostasis, so every increase in dopamine, whether naturally or through medication, is followed by a corresponding crash … referred to as the wear-off rebound effect. And these crashes are extremely unpleasant and debilitating. The worst part of my day, is the twice-daily post-meds dopamine crash I experience.
I have a month to figure out a plan. Mari is taking a trip to Estonia during the first two weeks of August to visit her son and new granddaughter, so I won’t be doing any weaning off until she returns. At this point, I’m thinking it would be best to wean off my evening dose first. It’s only one tab, and I take it primarily to be able to eat dinner free of trembling. I actually did an inadvertent test run recently when I forgot to take my evening dose. I got through dinner okay and I didn’t endure the usual wear-off crash. I did feel more out of sorts than normal the next morning, but I got through it okay. Of course, I would plan to wean off at a much slower rate than a full tab [I plan to wean off at a rate of 1/4 per week]. If all goes well weaning off my evening dose, I will tackle my morning dose.
For those who are interested, I will post regular blogs to report my progress. In the meantime, I will be focusung on raising my baseline dopamine.
Initially, I was going to title this post, “I am puzzled about a few things.” I believed that if I could answer certain questions, therein would lie the solution to the PD mystery. But before I finished articulating the problem, BAMM! there came the solution. Self-love!
Let me explain.
I had been wrestling with a few issues:
First, in the last year, I have had five of what I would describe as acute anxiety experiences, or stressful events, that resulted in progressively worse off-meds symptoms, shorter on-meds time and a more intense wear-off rebound period. I suspected that this occurred because my baseline dopamine levels had dropped.
I had a few questions: Did my baseline dopamine levels, in fact, drop, and if so, why? Why didn’t my baseline dopamine levels return to their pre-stressful event levels? What could I do to restore my previous baseline levels?
In the same time period, I had five spontaneous, temporary remissions of varying durations. Three lasted for five minutes, one lasted for ten minutes and one lasted for thirty minutes. Four of them occurred after my morning meditation, while one occurred after sitting quietly observing my surroundings.
I also had a temporary remission in 2014. It lasted for four days.
I had questions about this, as well: What is the purpose of these remissions? What is the physiology behind them? Can I learn how to create them intentionally?
I have had other questions and experiences that have led to important insights.
For example, I believe the seeds for my developing the symptoms of PD were sown years earlier in my life … when I was twenty-one years old. At that time, I had what I believe was a neurological breakdown [I was never formally diagnosed], after a panic attack, triggered by a weekend of heavy drinking. It occurred during a period in my life when I was experiencing a lot of stress, eating poorly, drinking excessively, and during which I experienced two severe head injuries, the loss of two childhood dreams/ambitions and several emotional traumas.
Also, from the moment of my diagnosis, I believed I could recover, even though there was no record of anyone doing so. Then I learned about Bianca Molle, Howard Shifke and John Coleman, who had all recovered, and I connected with David Thompson through my blog [he recovered after we met], and I knew recovery was possible.
Also, in 2014, I experienced three panic attacks over the course of ten days. Out of this experience, I learned that fear/worry/stress are at the root of the symptoms of PD. Prior to that, I believed chronic anger was the cause.
In 2018, I started doing Bowen Therapy. I did Bowen because John Coleman did it as part of his recovery protocol. Bowen Therapy is like deep pressure point massage. It is intended to release stress and emotional memory from the muscle facia. I did treatments every two weeks from January to October. With each treatment, my symptoms got progressively worse. I was expecting some sort of break through, but it never happened. Instead, I started experiencing panic attacks which lasted for six weeks, culminating in me being hospitalized, completely immobile, after a bad reaction to Lorazepan [an anxiety medication]. In the hospital, I let the doctors talk me into going on Sinemet. Initially, Sinemet really helped. I walked out of the hospital after seven days and went home and shovelled snow. For the next ten months, I felt good all day long. There was no off-time. Then I had a stressful event, after which, I started experiencing off-times. It took me awhile to understand this experience, but what I believe happened, is that with each Bowen treatment, stress, in the form of cortisol, was being released from my muscle facia. The cortisol wasn’t being released from my system. Instead, it kept building and building until the point where it triggered the panic attacks.
Speaking of cortisol, I believe I spent much of my life, including my childhood, in the fight/flight/freeze, cortisol producing state … due to the fact that I spent so much time living in fear [mostly because I was doing things I shouldn’t have been doing and was afraid of getting caught … and punished]. As a result, I believe I have been dopamine deprived most of my life, which would explain my addictive, self-destructive behaviors.
I also believe that detrimental beliefs, such as, the beliefs that I’m no good and that I should be ashamed of myself, have kept me in a cortisol producing, fear state.
One other thing I learned along the way, is that this is as much a spiritual journey as it is a physical healing journey. In fact, I believe the spiritual journey is the more important journey. As part of this spiritual awakening, I learned that there are three aspects to my being. First, there is my physical body. Second, there is my personality, or egoic self … the combination and collection of genes, experiences and culture that have shaped my personality and beliefs. Thirdly, there is my inner-self … or soul or higher-self … my connection to the universal-energetic-intelligence. This aspect of me is without bias or judgement. It understands the purpose of my journey, and provides me with appropriate guidance and insights.
So what does all this mean?
In my last post, I discussed all the things I am doing to facilitate my recovery by raising my baseline dopamine levels, but after the realization that a lack of self-love is at the root of the symptoms I am experiencing, I realized that I was putting the cart before the horse [how can I, for example, manifest a life of excellent health when I don’t live in self-love]. So I decided to change my focus.
In order to bring about my recovery, I am doing three things to cultivate self-love: emotional healing, gratitude expression and manifesting.
I repeat the following mantra: I call on my inner-self, Raphael, Michael, Gabriel and Urael [the four archangels], to assist me in giving over to the healing energy of the universal-energetic-intelligence, all of the low frequency vibrational energy that is trapped inside my energy field, so that it can be transmuted into love, particularly that connected to the thoughts, beliefs, emotions and fear that are not in vibrational harmony and alignment with my intention to live in divine self-love.
I repeat the following: Thank you so much for enabling me to live my life in a state of divine self-love.
I ask the following: Imagine what my life would be like if I lived it in a state of divine self-love. Wouldn’t that be awesome?
Here’s how I see this playing out. In order to facilitate the manifestation of self-love, I need to first acknowledge my true nature which is divine love. As I said earlier, I realized several years ago that this was firstly, a spiritual journey, which means, understanding that I am a spiritual being participating on a physical level in the flow-of-life. Part of the purpose of this journey is to actuate self-love through awareness, understanding and forgiveness.
The next step is to actuate self-love through the three-part process outlined above.
This leads to living my life with cheerful enthusiasm and awe, which will then lead to an increase in my baseline dopamine levels, which will then dissolve the PD symptoms I am experiencing, allowing me to discontinue the medication … and get on with my life.
After implementing the three-part healing process outlined above, I encountered immediate [and intense] resistance, in the form of fear, resulting in more debilitating “off-meds” symptoms, particularly, freezing and unsteadiness on my feet. I have been finding it extremely difficult to walk around the house or stand in one place [interestingly enough, I can still powerwalk with proficiency]. I think this is happening, because in order to bring about self-love, I must first purge self-loathing, and I believe my three-part healing process is purging the symptoms of self-loathing, particularly, fear and shame. I believe this is a necessary part of the process. It’s akin to bringing home a lovely bottle of red wine and realizing that your only glass is filled with sour milk. Before you can enjoy the wine, you need to dump the milk and wash the glass.
Even though I am still experiencing intense symptoms, I decided to go ahead and post this blog because I am excited and confident that this healing approach will facilitate my recovery, and I want to share my experience with everyone, including the challenges. I believe in my heart that purging self-loathing and enacting self-love is the key to recovery.
My recovery protocol is constantly evolving. My diet, supplements, exercise regimen, spiritual practice and healing focus, are ever changing, depending on what I feel is most important for restoring my health at a given point in time.
Lately I have been focusing on living with a positive, cheerful state of mind. I have also been focusing more so on manifesting what I want rather than healing what I have … what I don’t want. I have been doing so through daily expressions of gratitude.
That said, here are my daily gratitude expressions:
Thank you so much for enabling me to live in excellent health
Thank you so much for enabling me to return my body to homeostasis
Thank you so much for enabling me to emanate divine love from every aspect of my being
Thank you so much for enabling me to live my life in cheerful enthusiasm and awe
Thank you so much for enabling me to live my life in divine trust
Thank you so much for enabling me to trust and believe in myself
Thank you so much for enabling me to live each moment of my life in a state of joy, simply for being and doing
I have also been focusing on developing a positive self-image through a technique I have been practicing after reading Wayne Dyer’s, Change Your Thoughts, Change Your Life. I look in the mirror and repeat, “You are beautiful.” “You are a beautiful soul.” “You are a beautiful aspect of the Universal-Energetic-Intelligence.” “You are a beautiful participant in the flow of life.”
I believe this practice helps to stimulate the release of dopamine, serotonin, GABA and oxytocin, which is intended to raise my baseline dopamine levels.
This morning I read Verse 71 from Wayne Dyer’s exceptional interpretation of the Tao Te Ching, Change Your Thoughts, Change Your Life, Living the Wisdom of the Tao. The Tao Te Ching is an ancient Chinese text, written around 2500 BC, based on the teachings of Lao-tzu.
The verse is titled, Living Without Sickness, and the gist of it is this: until we get sick of living with sickness, we will remain sick. And the thing that is keeping us sick, is our thoughts.
Dyer suggests that it is our thoughts rooted in fear, anxiety, anger, hatred, worry, guilt, stress, impatience, and so on, that are at the root of our physical symptoms, and this occurs when we are centered in ego rather than divine love.
Conversely, if our thoughts emanated from love, gratitude, forgiveness, compassion, kindness, patience, etc., we would not be sick.
What Dyer doesn’t address, are the detrimental beliefs that are at the root of sick [detrimental] thoughts. This is important because our beliefs greatly influence our thoughts. From this perspective, it essential to be at peace with our past, as well as, being accepting of our present circumstances.
Also, it is important to note that when you are in the Parkinson’s state, your body is coursing with cortisol [the stress hormone] leaving you more succeptible to harmful thoughts, particularly during the wear-off rebound effect period when the meds wear off.
Despite my awareness, I regularly catch myself in negative thoughts because, admittedly, I am not fully at peace with my past … or for that matter, my present.
I have a mantra that I repeat every day that helps remind me to stay rooted in love: I am divine love. Love is within me. Love moves throughout me. Love surrounds me. Love protects me. Love emanates from every aspect of my being. I am divine love.
Also, it is my intention each day to make each moment joyful simply by being and doing and one of the things I do to accomplish this is expressing gratitude.
Keeping our thoughts positive requires constant awareness. It’s a challenge but it’s worth it!
According to Eckhart Tolle, author of The PowerofNow and A New Earth, the key to spiritual awakening, is present moment awareness. In my experience, it’s also one of the keys to living in excellent health.
As challenging as this journey has been, living with the symptoms of PD, one of the things that has kept me moving forward, is my spiritual practice and a big and important part of that has been focusing on the present moment. It hasn’t been easy. In fact, it has been a constant tug-of-war … fear, worry and stress versus awareness and presence.
To stay ahead requires constant vigilance and I haven’t always been vigilant. I regularly find myself lost in unconscious thought … worrying. So, I focus on my breath or place my attention on what I’m doing or I observe my surroundings … until the next time I catch myself.
Perhaps my biggest challenge is suddenly finding myself in an intense state of fear in which I am experiencing intense trembling, stiff-gait, freezing and unsteadiness on my feet. This happens frequently … even when I’m doing something creative, like writing a blog. Quite often I am unable to identify the thought [worry] that triggered it. What I have learned to do is acknowledge that an erroneous thought put me in this state. The thought is likely related to a detrimental belief. I also remind myself that the thought occured when I was off meds and thus more vulnerable to such thoughts because my body is full of cortisol. Then I place my attention on my breath or my surroundings.
Of course there are times when my thoughts are purposeful … problem-solving, planning or creating … but even during these times I have to constantly be aware.
Quite often, my thoughts create feelings that reflect my beliefs, and as such, guide me to healing I need to undertake. For example, if I am lost in thoughts that are creating a feeling of victimhood, it is likely I hold the belief that I am a victim.
I must constantly remind myself that in reality, all we have is the present moment. Everything else is just thought … about the past or the future. Perhaps these thoughts are creating pleasant feelings. Perhaps they are creating detrimental, unpleasant feelings. The key either way is to be aware and to continuously place my attention in the present moment.