April is Parkison’s Awareness Month

Parkinson’s disease (PD)

A neurodegenerative disorder that affects predominately the dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra.

What are the symptoms of Parkinson’s disease?

Symptoms generally develop slowly over years. The progression of symptoms is often a bit different from one person to another due to the diversity of the disease. People with PD may experience:

  • Tremor, mainly at rest and described as pill rolling tremor in hands; other forms of tremor are possible
  • Slowness and paucity of movement (called bradykinesia and hypokinesia)
  • Limb stiffness (rigidity)
  • Gait and balance problems (postural instability)

In addition to movement-related (“motor”) symptoms, Parkinson’s symptoms may be unrelated to movement (“non-motor”). People with PD are often more impacted by their non-motor symptoms than motor symptoms. Examples of non-motor symptoms include: depression, anxiety, apathy, hallucinations, constipation, orthostatic hypotension, sleep disorders, loss of sense of smell, and a variety of cognitive impairments.

Cause

The cause remains largely unknown. Scientists believe a combination of genetic and environmental factors are the cause.

Treatment

Although there is no cure, treatment options vary and include medications, lifestyle adjustments and surgery. While Parkinson’s itself is not fatal, disease complications can be serious. The Centers for Disease Control and Prevention (CDC) rated complications from PD as the 14th cause of death in the U.S.

The first step to living well with Parkinson’s disease is to understand the disease and the progression.

It is possible to have a good to great quality of life with PD. Working with your doctor and following recommended therapies are essential in successfully treating symptoms by using dopaminergic medications. People with PD need this medication because they have low levels or are missing dopamine in the brain, mainly due to impairment of neurons in the substantia nigra.

It is important to understand that motor symptoms of PD only become evident later in the course of the disease, after 60% to 80% of the substantia nigra neurons have already been lost or impaired. Lewy bodies (accumulation of abnormal alpha-synuclein) are found in substantia nigra neurons of people with PD.

Parkinson’s Facts Everyone Should Know

Parkinson’s Awareness Month is the perfect time to brush up on your Parkinson’s facts. Here are 5 fast facts about PD: 

  1. Nearly 90,000 people in the U.S. are diagnosed with Parkinson’s each year. 
  2. Scientists believe a combination of environmental and genetic factors cause PD.
  3. People with Parkinson’s experience both movement and non-movement related symptoms.
  4. Symptoms can be managed through treatments like medications, lifestyle changes, exercise and in some cases, surgery.
  5. Early-onset Parkinson’s disease occurs in people younger than 50 years of age.

Facts from and more information at: Parkinson’s Foundation

PD and Me

While I usually don’t blog about it, long-time followers know that I was diagnosed with Parkinson’s Disease (PD) in 2018. Since this is Parkinson’s awareness month, I thought I would share about my condition and how I am managing it.

When I was first diagnosed with PD it seemed to me like the condition was progressing at an alarming rate. My symptoms, most of which I attributed to menopause included muscle aches and stiffness, what I called it “brain fog” for lack of a better term, and head and sometimes slight hand tremors. The tremors were the symptom the indicated that I was dealing with something more than menopause. Also, in hindsight, what I called “brain fog” was that I was having problems translating my thoughts into words. The thoughts were clear in my mind, but I would struggle to get the words out, and sometimes when they would come out, they were not what I meant to say. This difficulty translating thoughts into words applied to writing as well.

Over a period of about 6 months, I underwent several medical tests and eventually was diagnoses with PD through a DAT scan. After my diagnoses the neurologist told me that there were no medications that would help with the type of tremors that I had (head tremors). He thought that a procedure called deep brain stimulation (DBS) would likely help since he currently had 20 patients who had DBS, 18 of them with good results

Deep brain stimulation involves implanting electrodes into targeted areas of the brain. These electrodes deliver mild electrical currents that modulate abnormal brain activity, helping to improve symptoms. The electrical impulses are generated by a pacemaker-like device called an implantable pulse generator (IPG), which is placed under the skin, usually near the collarbone or upper chest, and connected to electrodes via insulated wires that run under the skin to the brain. I was not ready to have brain surgery and the thought of someone using a computer type devise to “control” my brain was just creepy. I went home telling the doctor I would think about it.

I didn’t think about it for long, but instead I started researching PD. My first question was what could have caused this. Most of what I read didn’t make much sense because for years I had used natural skin care products and cleaning supplies and we avoided herbicides and pesticides when gardening, so I really did not have excessive exposure to toxins. It was only when I came across an article about amalgam filling leaching mercury, and that the mercury could potentially cross the blood-brain barrier, that I had an aha moment. I had several amalgam fillings and some had been in my mouth for 35+ years.

I decided to have my amalgam fillings removed. When I consulted with my dentist, she reluctantly said that she would do the work, but she did not feel that my fillings had anything to do with the Parkinsons. “Not everyone who has silver (amalgam) fillings get Parkinsons,” she said. “Not everyone who has silver fillings has the same genes that I do,” I answered. Then I found a new dentist. One who was aware of the dangers of amalgam and did not use it in his practice. I fired my old dentist.

A few weeks after I had all of my amalgam fillings removed, I noticed some of my symptoms were no longer present. My handwriting, which had gotten really small, returned to its normal size and my arms began to swing again when I walked. These were symptoms that I did not identify until after I was diagnosed and began learning about PD. Also, the “brain fog” got better. My ability to communicate through speech returned to normal and while my writing requires more focus and takes more time than it used to, you can see that I am still at it. 🙂

Today, seven-and-a-half-years post diagnoses, I can honestly say that by the Grace of God I am still medication free and the Parkinsons has not progressed. I still deal with some of the symptoms of PD but I am doing well.

This disease is different for everyone, so what helps me may not help someone else with PD. Below are some of the things that I do to manage my condition.

Exercise is said to be the single most important thing for people with PD. I try to include at least 30 minutes of walking, recumbent bike, or work out in the pond (I’m looking forward to summer) each day. If I miss two or more days in a row, I notice my symptoms getting worse.

Gut health is important, so I get my daily dose of probiotics by drinking kombucha. There are also some foods I try to avoid.

Quality sleep is also important in managing PD and at times it’s hard to get enough. I use various methods to try to help me sleep. Sometimes they help but not always. I give myself a hand/foot massage before going to bed. I usually read a book in bed before falling asleep. I try to avoid eating anything for a least two hours before going to bed. I recently started including a tablespoon or more of extra virgin olive oil with my dinner and have noticed that I seem to be getting a more restful sleep, and I am having less issues with night sweats (another symptom) since starting the olive oil. I also leave time during the day (most days) to nap if I need to. I do know that if I get overly tired my symptoms get worse and I have a hard time functioning.

Managing or avoiding stress is important as stress will exacerbate the symptoms. I am blessed that my life is pretty routine and stress-free, but I realized recently that even though I am not feeling stressed, just being out of my comfort zone can make my tremors worse. In this case, I think just having an awareness of how my body is reacting is important, so I don’t do things like walk around with a cup of hot coffee and spill it all over the place.

I have tried many, and do take several, supplements, but since all of our needs are different, I’m not going to go into a lot of detail about them. I will say that the one supplement that I take that I am certain helps me is taurine. I have been taking it for several years and it helps prevent nighttime muscle cramping and stiffness/rigidity when walking. I know it works because I have run out of it a couple of times and after about three days, I begin experiencing these symptoms again.

I haven’t thought about it since last summer, but over-heating can become a problem, so making sure that I am well hydrated is important and drinking an electrolyte drink helps.

I know that I am very blessed that my condition has not progressed and I do not take this for granted. I am ever aware that this disease could worsen at any time, so I will continue to learn about treatments and ways to slow progression, and pray for strength, wisdom and continued grace.

Thanks for reading.

1 thought on “April is Parkison’s Awareness Month

  1. Thank you for that information about Parkinson’s Disease Ruth. I do remember about your diagnosis as I am a longtime follower. I am sure you were terrified when you got that diagnosis, but I agree that I would not like someone using a computer on my brain either. A long time ago I was walking at the Park and another walker that I’ve never seen before started talking to me and told me he had had all his silver fillings removed and replaced with porcelain filings because he thought the ingredients were harmful. I had never known anyone who had that done before. I’m glad you were able to come up with a plan to keep the symptoms at bay that works for you. I’m sure you get most exercise than most people, besides the bike and pond exercises, just by working with your husband on the farm and cooking and “putting up” what you grow. I hope your health stays status quo the rest of your days.

    Like

I would love to hear from you.