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Life Doesn’t Allow Do-overs, So Move On from Guilt

Sometimes, I beat myself up when something goes wrong in my life. I convince myself that if I had only done it this way instead of that way, things may have turned out so much better. Or, if I had only said something different, I might have been more helpful. But there are no do-overs in life.

Truth versus a lie

Isn’t it much easier to play the negative tapes stored in the recesses of our brains than it is to listen to truth tapes? It is for me.

I remember arriving at one of my Parkinson’s appointments several years ago carrying a load of guilt. If only I hadn’t used so much bleach to whiten the clothes or so much 409 to clean the cupboard doors. Ant spray, wasp spray — you name it, I’d probably used it. I had truly convinced myself I’d had something to do with “getting” Parkinson’s. My doctor finally helped to lift my burden by telling me the truth: It wasn’t my fault. READ MORE

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My PD Frustration Consists of More Than Only Symptoms and Treatments

 

 

by Jean Mellano

You don’t have to be positive all the time. It’s perfectly okay to feel sad, angry, annoyed, frustrated, scared and anxious. Having feelings doesn’t make you a ‘negative person.’ It makes you human.” –Lori Deschene

As many people with Parkinson’s will attest, both Parkinson’s disease (PD) symptoms and finding the right treatment to alleviate them can be extremely frustrating.

The perception

Just as frustrating for me is that everyone thinks I am fine. Since I have no tremors, there are no obvious symptoms. Most well-meaning, healthy people either tell me I look great or that they have the same issues as me — cognitive decline, balance, poor fine motor skills, slowness of movement, and fatigue.

The truth

I struggle to maintain balance and must consciously avoid walking into furniture. My body, especially on the left side, does not always listen to me when I tell it to do something. Trying to maintain focus to do this is draining in itself. I also feel weak inside and I am always extremely fatigued. It is an exhaustion that no amount of sleep or rest can diminish.

A glimpse into my frustration

To help my fine motor skills, I have taken up ukulele lessons. I never played any instrument in my life, so I have no muscle memory to call on. The left hand and fingers play a huge role in learning how to use this instrument.

Recently, I had a meltdown in one of my lessons. My left fingers were not listening to me while trying to play some chords. The instructor was very patient, but I don’t think he understood the extent of my struggles. I was trying to play a G chord, which requires positioning three fingers from my left hand on various frets. These fingers would not cooperate and they just froze. With all the energy I expended trying to get my fingers positioned, I worked up a sweat.

Finally, so full of despair and frustration over what I have lost, I just broke down in tears. I can no longer control my body.

Empathy

The frustration continues on many fronts for me: the symptoms themselves, trying to find something to help treat my symptoms, and well-intentioned people not comprehending what I struggle with daily. Many years before I was affected by this disease, a friend of mine was diagnosed with PD. I could never understand why it was so hard for her to put on a seat belt.

Now I know.

I have a form of Parkinson’s disease, which I don’t like. My legs don’t move when my brain tells them to. It’s very frustrating.” –George H. W. Bush

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

meditation

Living with Parkinson’s disease is a struggle against the loss of both motor and cognitive functions. One must invest effort into an action plan that reduces the impact of the disease — a rehab plan. This effort is daily (sometimes hourly) and can be exhausting.

Living with PD is like carrying a large backpack of rocks. It is at times a crushing burden that can overwhelm. Balance needs to be established in my life so that the work I do in fighting the disease does not consume me. I must spend time looking for lightness of being to balance out the heavy PD burden. I do this through a regular practice of meditation.

There are many ways to practice meditation: sitting and listening to calming music, sitting and gazing at a fireplace, practicing tai chi, or exercising with rhythmic breathing. These practices seek to help one enter the quiet mind. It is within the quiet mind that one experiences lightness of being. Meditation helps relieve stress and focus attention — both of which are of benefit to those with PD. There are books providing instructions on how to do this, but none deal directly with PD.

Practicing meditation with PD presents some unique challenges. The meditation practice starts with calming the body, and this is the first obstacle PD complicates. Repetitive motor activities like cycling, tai chi, or gardening are helpful when combined with focused breathwork.

Focused breathwork is diaphragm breathing in which you focus your full attention on the breath. Guided meditation, either from a teacher, in person, or from a recording, can help with this process of shifting attention. This shifting of attention is the second obstacle PD complicates.

Once past the first two obstacles, you should feel a little more relaxed. This relaxed state is the path leading to the door into the quiet mind, but I am prevented from going down that path by a third obstacle.

This third obstacle is heightened emotions and difficulty in regulating them. I have written about how PD heightens the impulse signals to the brain. During the meditation process, the signal-to-noise ratio changes, meaning that as one practices quieting the mind, the noise goes down and the signals connected to emotion appear louder.

The quiet mind is a mental state that silences the noise of the world, the body, and the self while at the same time maintaining a sense of peace and safety. It is something I practiced for decades and then lost touch with over the last seven years while battling PD. As my life has become stable, I am now returning to the practice and finding it much more difficult. I feel like a novice struggling with all the obstacles I used to walk around with ease. This third obstacle does impede my looking for lightness of being.

As I have helped patients to find a place of peace and safety, together we would often experience loud emotions. These are emotions connected to things we feel (consciously or subconsciously) that need attention. They are like boulders in the path, looking like obstacles blocking the way forward to the quiet mind. But one can learn to walk around them.

Most of the folks I worked with would have several boulders to walk around and needed multiple sessions to learn how to walk around them. As I write this, I remember the tender patience I should offer to myself.

Once past the boulders of emotion, you then arrive at the doorstep of the quiet mind. PD has made looking for lightness of being much more difficult for me, but not impossible. I have memories, and recently have felt glimpses of peace and deep calmness.

Seeking lightness of being ties into my New Year’s resolution. For me to quiet down the old tapes (emotional boulders in the path), I need to have a new mental state to go to. I can’t just remove the tapes and leave a void, because that void will be quickly filled back in with the old mental habits. Looking for lightness of being will be a lifetime adventure.

What ways do you practice meditation, and how have you found it to be helpful?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Meditation and Parkinson’s Disease: Looking for Lightness of Being appeared first on Parkinson’s News Today.

What Is Helping Me the Most in My Parkinson’s Battle?

 

No two Parkinson’s disease patients are alike

I am slowly coming to realize that each diagnosis of Parkinson’s disease (PD) is unique. PD patients suffer different symptoms and different rates of disease progression. Some remedies work for some, and not for others.

In many cases, those of us with PD are left to our own devices. Doctors can only suggest options for us. As for medications, in the end, we must listen to our bodies very carefully to determine what will and what won’t work. The ultimate goal is to find the right “cocktail” of drugs so that PD symptoms are masked and there are few or manageable side effects. Sadly, my experience has been that changes in medications and dosages have not given me aha! moments where I can see a significant reduction in symptoms. If there are any improvements, they are extremely subtle.

Is it the weather?

Many of my fellow PD sufferers have shared their struggles with the appearance of a possible new symptom or worsening of existing symptoms. Is it something we ate? Or do we chalk it up to a bad PD day? Could it be fluctuations in barometric pressure or is it part of the normal aging process? Is our disease progressing or have we taken our medications at the wrong times? Should we have eaten more food or had more water with our pills? Did we get enough sleep or are we too stressed? The list goes on and on. With PD, there is so much uncertainty. It is very difficult to determine what is helping my symptoms or slowing the disease progression, and what is not.

What do I think has helped me the most?

I leave no stone unturned in my efforts to combat this disease, especially when it comes to exercise and movement alternatives.

In September 2017, I started Rock Steady Boxing twice a week.

Boxing has been one of the most effective tools in my arsenal for fighting PD. It has given me the confidence to feel like the athlete I once was. Boxing helps me improve my stamina, speed, and strength, and the participants (everyone in the class has PD) offer great support and camaraderie. As I set out on my one-hour commute to Rock Steady Boxing class twice a week and put on my hand wraps and gloves, I truly feel like a warrior getting ready for battle.

helping
(Photo by Michael Heller)

Boxing and movement, in general, have helped me the most in my daily struggles with this disease. In no particular order, I also credit the following with helping me in my war against PD:

  • Physical therapy once a week (for balance)
  • Massage once or twice a week (for stiffness and rigidity)
  • Yoga two times per week and meditation for 20 minutes up to five times per week (to train me to be in the moment, and not focus on the prognosis of this disease)
  • Attitude adjustment (accepting that I have this disease and counting my blessings)
  • Sinemet (carbidopa-levodopa), medication to relieve internal tremors

Treating PD appears to be all about finding the right combination of some or all of the following components:

  • Exercise
  • Diet
  • Supplements
  • Prescription medications

A formula for one PD patient may not work for another PD patient, and the plan must continuously be tweaked. As difficult as it is, we must reduce our stress levels. I believe both good and bad stress exacerbate our symptoms.

In a future column, I will share some of my experiences with the Rock Steady Boxing classes.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post What Is Helping Me the Most in My Parkinson’s Battle? appeared first on Parkinson’s News Today.