An Acrostic: Just What Is Parkinson’s Disease?

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Sprinkled Pink Photo by Sherri Woodbridge, 2016

Painful.

Always present. Always. Even if ‘evidence’ is not outwardly apparent.

Relentless. Mentally, physically, and emotionally.

Kin-friendly. While research shows the numbers to be close to nil for PD to be hereditary, researchers now think that about 7 or 8 percent of patients with PD have a direct genetic link.

Individualistic. No two cases are exactly alike.

Non-discrimitory. Anyone, any age, any race, any shape or size, any language, any gender, anywhere, any hair color, any time, day or night. You get the picture, right?

Shuffle-walking-causer

Oblivious to how I may want my day to go.

Not very nice. No. Not at all.

Shaker-maker

 

Drool and depression inducer

Icky, icky, icky

Stiffness and slowness creator

Enhancer of humility in so very many, many ways

Apathy-maker

Subject to dystonia and dyskinesia and great dislike by its recipient

Exactly that aforementioned above and much more!

Apathy in Parkinson’s Disease

Just what does apathy mean? Some say that the opposite of hate isn’t love, but apathy – an attitude of not caring. Miriam Webster defines it as showing little or no feeling or emotion. Spiritless. There’s little or no interest or concern. You feel:

  •  indifferent
  •  complacen
  •  disinterested
  • unconcerned

You are

  •  lukewarm
  • aloof
  • cold
  • numb
  • unemootional
  • detached
  • unfeeling
  • insensitive
  • unattentive

Ever feel that way? I highlighted the word spiritless above, because I think that sums up the whole mess.

Apathy can be pretty pathetic and discouraging when you come across it in someone. Most people who are apathetic cause you to feel frustrated by their seemingly sense of detachment and unfeeling attitude toward life. However, in a person with Parkinson’s disease, often beknownest to them what is truly happening, they don’t want to feel this way. They don’t want to feel numb, lifeless, or spiritless.

Some tend to believe that apathy and depression are one of the same. According to the Journal of Neuropsychiatry, “Apathy is defined as diminished motivation not attributable to a decreased level of consciousness, cognitive impairment, or emotional distress. Depression involves considerable emotional distress, evidenced by tearfulness, sadness, anxiety, agitation, insomnia, anorexia, feelings of worthlessness and hopelessness, and recurrent thoughts of death.” In a study conducted several years ago, doctors concluded that in Parkinson’s disease, apathy is present, but depression is more consistent with the disease. So do we ignore the sometimes and shoot for the consistent? No. It all needs to be addressed. So where do you start?

I have struggled with both aspects of these two specific non-motor symptoms. Apathy has robbed me of time. Opportunities. So has depression. Whereas apathy has left me feeling unemotional and numb, depression has left me in darkness, despair and desperation. When they have coincided with one another, it has felt like a ticking time bomb in my head and spirit. It is a scarey place to be and it is real.

  • For me, part of the apathetic feeling I had came from feeling like I didn’t know what to do next. Feeling stuck in those ‘off’ moments. Keeping a list of things I want to accomplish or need to accomplish, no matter how simple or mundane it may seem, helps to bring things back into focus. Here are some practical suggestions for those moments when you feel bound in the land of apathy (and they help for depression mode, too):Get up, take a shower, get dressed. Don’t think about how you ‘feel’. Don’t allow yourself to get distracted just be like a Nike commercial and Just Do It. Get going. And laying out your clothes the night before may sound childish, but who cares if it makes your life easier.
  • Get some exercise. Stretch. Walk. Go for a swim. If you can’t motivate yourself, ask someone to help you/keep you accountable. To pull you out of the house if they must, and drag you along until you’re going along because you now see just how much better you can feel.
  • Take your medications on time. This involves sorting them beforehand and having them ready to pop in your mouth. When you’re feeling apathetic or depressed, it is easy to just forget it becasuse unscrewing five child-proof prescription bottle caps four times a day isn’t something you’re going to feel like doing. You’ll pay for that apathetic thinking within the hour.
  • When you have things you really shouldn’t put off, do the things you hate first. That will make accomplishing your goals easier.
  • Talk to a friend. Have someone pray with you and/or for you. Having another person to share life’s struggles makes the struggle bearable.
  • Talk to your doctor. There are treatments for apathy and depression for people with Parkinson’s disease who find themselves fighting to stay sane. This disease already takes enough from us. Don’t let it take your joy and happiness, too.

Bringing Awareness to Something You’d Just as Soon Forget

Some  people think Parkinson’s disease is a movement disorder and they would be correct. Others would say it is a disease that affects more than movement and they would be right. Some say it starts with a tremor and that is likely. Some say it starts with stiffness and that is a possibility but did you know the first symptom that is often overlooked and undertreated is depression?

April is Parkinson’s Awareness month and with that comes a responsibility to make aware the effects of this disease to the community at large by those affected by it. If people wtih Parkinson’s disease (PD) or people who know someone with PD don’t bring an awareness to this debilitating disease, no one else will. If it’s not important to make known the importance of finding a cure with those affected by PD, it won’t be important to anyone else.

PD can take many forms. It can begin with depression, as stated above, include tremors, dystonia (a cramping and tightening of the fingers, feet, neck, and/or other parts of the body. The Parkinson’s patient can experience dyskenesia – involuntary flailing about movements. These are the signs/symptoms that most people generally associate this diease with, but that is becasuse these are the symptoms of having Parkinson’s that are visible. Other signs that are not as commonly known and have been associated with having Parkinson’s disease include losing the ability to smell, uncontrolled drooling, a softening of the voice, walking as if you are dragging your foot, a shuffled walk, tripping/falling, and more.

Parkinson’s disease is also known as an invisible diease becasuse there are many other symptoms that are found with having PD. Along with the visible signs, the invisible signs take just as strong a toll on the body, both physcially and mentally. These invisible signs can include severe back and neck pain, migraine-like headaches, a tightening of the muscles, a change in handwriting quality, an expressionless face, and also depression, as mentioned above.

Someone can have all the symptoms associated with PD, some of the symptoms, and/or some sympotms can change or disappear. PD mimicks so many other diseases, such as Lupus and Multiple Sclerosis that it often makes it difficult to properly diagnose and often takes a neurologist who speciaizes in movement disorders to make a correct diagnosis. This is especially true with people who are experiencing symptoms at an age uncommon to those riddled with PD (the elderly).  This age group of people – those who are diagnosed under the age of 60 – are known as patients with Young Onset Parkinson’s disease (YOPD) and the number of those being diagnosed with YOPD is increasing daily. What was once known as an “old people’s disease” is becoming more common with those under the age of 50.

There are several organizations with resources readily available for the asking. These include the Michael J Fox Foundation (michaeljfox.org), the Natioinal Pakrinson’s Foundation (parkinson.org), and the American Parkinson’s Disease Association (apdaparkinson.org). In Oregon, the Parkinson’s Resources of Oregon (parkinsonsresources.org) is available to answer quesitons regarding PD and also has much informatioin available to the public as well.

PD doesn’t play favorites. It does not take age into account, gender, or race. It can affect anyone, at any time. It can advance quickly or it can progress slowly. The cause and the cure is still unknown, which is why bringing awareness to this disease is so important. If I (now 55 and having had PD for 24 years) don’t think it important in bringing awareness to this debilitating disease, I can’t expect anyone else to think it important.

Journeying with you,

Sherri