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Parkinson's Disease: The Alien in My Brain

Author:

Lela is a Certified Medical Laboratory Scientist (ASCP) with 38 years of experience in the medical industry and blood banking.

How My Symptoms Started

Parkinson's conditions are varied. Some people will have mild symptoms while others will have disabling symptoms, but it is not spread in the usual way disease is spread.

My symptoms started much like the video describes. My left thumb began tapping when I rested my hand on the arm of a chair or desk. This went on for several years, and I thought nothing of it. I also had DeQuervain's Tenosynovitis1 in that thumb and wore a stainless steel splint called a Murphy ring.

Eventually, and only after I retired early due to spinal stenosis, my whole left hand began to tremor. Now the tremor is present in both hands, I have leg pain and trouble balancing while walking. The onset of these symptoms took about five years.

I hear a rhythm in the tremor. I can hold my hand up to cup my ear, and I can hear the electrical pulses going through my hand. I don't know any other way to describe it, but I had a nurse listen to the palm of my hand with a stethoscope, and she was able to hear it also.

The Diagnosis

I was referred to a neurologist, a doctor specializing in the human brain. She told me at the time that I had Parkinson's Tremors and she started me on the gold standard first medication, Sinemet (brand name) or carbidopa/levodopa (generic name).

This medication did not change my symptoms or make me feel better. I consulted with my primary physician, an ER physician, and another doctor I know. They told me that if the Sinemet did not work, that what I have is "essential tremor," not Parkinson's tremor. So I went on my merry way, thinking I had dodged a bullet.

Two years later I went to see the neurologist again as my symptoms worsened. She sent me for a DAT scan, similar to an MRI. Two weeks later, I have the definitive diagnosis of Parkinson's Condition. This is where I meet the alien for the first time.

A normal brain scan on the left shows the typical "comma" shape highlighted picture of the substantia nigra2. In the middle photo, the substantia nigra part of the brain is not comma shaped. The right photo is advanced Parkinson's.

A normal brain scan on the left shows the typical "comma" shape highlighted picture of the substantia nigra2. In the middle photo, the substantia nigra part of the brain is not comma shaped. The right photo is advanced Parkinson's.

How My Brain Scans Looked

A normal brain scan on the left shows the typical "comma" shape highlighted in the picture of the substantia nigra2.

In the middle photo, the substantia nigra part of the brain is not comma-shaped, and the tail shape is gone. It looks like two alien eyes staring at you.

The image on the right shows that none of the substantia nigra has taken up the radioactive element, because none of it is active anymore. This is advanced Parkinson's Condition.

The substantia nigra area of the brain activates dopamine. Dopamine carries the electrical signals from the brain to the muscles and nerves. Without these dopamine-producing cells, the muscles and nerves do not get a full signal of what to do. Instead, the signals are distorted and the end result is abnormal movements of the peripheral and autonomic muscles and nerves.

Tip: If you are scheduled for a DAT scan, and you have prescription Xanax, ask the radiologist if you can take one before the scan. It will help with the shaking. The test is very uncomfortable for patients with tremors and it's best to be as still as possible. This is why Parkinson's Disease is sometimes called the "shaking" disease. Other names include palsy and tremors.

My symptoms

  • tremor of left hand progressing to left arm, and right hand
  • tremor of left foot
  • pain in calves and thighs compared to "charlie horse" pain, slow walking
  • left hip pain diagnosed as bursitis
  • loss of balance
  • trouble falling asleep
  • increased anxiety
  • discomfort in the neck and jaw

My Personal Results With Parkinson's Medication

Brand NameGeneric NameMy Side Effects and ResultsCost

Sinemet

Cardidopa/Levodopa

nausea, hallucinations, jerky movements

low

Neupro

Rotigotine patch

made tremors worse, jerky movements, extreme sleepiness

high

Ropinerole

 

dyslexia, made tremors worse, hallucinations

moderate

Amantadine HCL

 

dizziness, mild hallucinations

moderate

Baclofen

 

dizziness with relief of muscle spasms

low

Opiates

Morphine sulfate, hydrocodone

pain relief, anxiety relief, some tremor relief

low

Benadryl

diphenhydramine

sleep aid, some tremor relief

low

Xanax

benzodiazepines

Near immediate relief of anxiety and some relief of tremors. Warning! Do not take with opiates!

low

Deep Brain Stimulation

Deep Brain Stimulation, or DBS, is the treatment with the most success so far.

This involves small electrodes inserted into the brain's Substantia Negra to stimulate dopamine production. The patient will also have a battery pack under the skin to power the electrodes.

This is not a cure, but it appears to be very effective in stopping the tremors and walking problems.

How common is Parkinson's Disease?

References:

  1. DeQuervain's Tenosynovitis- "De Quervain's tenosynovitis (dih-kwer-VAINS ten-oh-sine-oh-VIE-tis) is a painful condition affecting the tendons on the thumb side of your wrist. If you have de Quervain's tenosynovitis, it will probably hurt when you turn your wrist, grasp anything or make a fist. Although the exact cause of de Quervain's tenosynovitis isn't known, any activity that relies on repetitive hand or wrist movement — such as working in the garden, playing golf or racket sports, or lifting your baby — can make it worse. "https://www.mayoclinic.org/diseases-conditions/de-quervains-tenosynovitis/symptoms-causes/syc-20371332 Patient Care & Health Information; Diseases & Conditions; Mayo Clinic; Sunday, February 24, 2019, 3:32:16 PM
  2. Sustantia Nigra - Substantia nigra - Wikipedia; https://en.wikipedia.org/wiki/Substantia_nigra Sunday, February 24, 2019
  3. WebMD Drugs & Medications - Medical information on prescription drugs, vitamins and over-the-counter medicines - https://www.webmd.com/drugs/2/index February 26, 2019

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2019 Lela

Comments: What are your experiences with Parkinson's?

Lela (author) from Somewhere near the heart of Texas on August 10, 2020:

Thank you, Peggy. I hope your family is safe from the pandemic. Houston is my home town and has been hit hard. Take care.

Peggy Woods from Houston, Texas on August 10, 2020:

I am so sorry to read that you have Parkinson's Disease, Lela. The list of medications that you have taken, and showing the side-effects and cost, may help others who are traveling that same path. I hope that researchers keep studying this disease and will find more effective treatments in the future that may help you and others.

Lela (author) from Somewhere near the heart of Texas on November 08, 2019:

Thank you, Linda and Paula. We all have to play withi the cards we were dealt. Soldier on!

Suzie from Carson City on November 07, 2019:

Lela......It is so beneficial that you have such an informed understanding of this condition. The more awareness, the better prepared to deal with it, I'm sure. As I viewed the list of medications and your side effects & results, it's clear you had quite an experience getting through the trial & error for ultimately discovering helpful drugs for you in particular.

I do know/have known a few individuals with ALS conditions (Parkinson's in one case) and realize that educating one's self is vital to day to day living. You are to be commended for your approach to this condition that has tried to interfere with your own life. Your attitude is amazing, Lela. I wish you the best. Paula

Linda Crampton from British Columbia, Canada on November 07, 2019:

I'm sorry that you have Parkinson's disease, Lela. The information that you've shared should be very useful for people in a similar situation. Best wishes for the future.

Lela (author) from Somewhere near the heart of Texas on November 07, 2019:

So far, I have opted out for DBS. My symptoms are not severe, just annoying. I have other problems that probably make me an unsatisfactory candidate for DBS.

Lora Hollings on November 06, 2019:

This is an excellent article on Parkinson's Disease. I hope that your condition stabilizes and improves with the DBS. I think someone who has been diagnosed with this condition will find your experience with different drugs used to help this condition to be beneficial. Thanks for sharing.

Lela (author) from Somewhere near the heart of Texas on November 06, 2019:

It's not a fatal condition, so no worries. Thank you for caring, I appreciate that.

Lela

Pamela Oglesby from Sunny Florida on November 06, 2019:

I am sorry to hear you have this condition. I think your article will probably help someone with this disease. I am glad you included your response to the medications.

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