Taking Care of You

I attended a conference on Parkinson’s disease where one of the speakers stated, “Hope is medicine.” In so many ways, that is so true. Fyodor Dostoevsky once said, “To live without hope is to cease to live.” As a Parkinson’s patient, it may be hard at times to feel hopeful.

One of the first symptoms that is often overlooked while Parkinson’s is making its mark on your life can be depression. By the time you are diagnosed, you may feel like your whole world has caved in and diagnosis is like a thousand ton weight of steel that has just landed on top of you as you lay there in a pit of grief.

A hard thing for us to talk about, much less deal with as a people in general, is depression. The difficulty of dealing with it only increases when you have a condition like PD, which can lend itself to making depression one of its star players. It can play a toll in the relationship between the patient and his/her caregiver, especially if we, as the patient, neglect or forget to take our ‘happy’ pills. It is my firm belief that if we are not taking care of ourselves emotionally and mentally, it will be a struggle to care for ourselves physically. When our mind is not functioning well, we tend to look at our disease with a somewhat distorted view, making it even harder to handle. Often, the distorted view only continues in a mental downward spiral.

If you’re struggling to find anything good in living with Parkinson’s, is it from viewing life with an outlook of despair and hopelessness? Do you think you may be someone who would benefit from an anti-depressant? Let me be clear – this is nothing to be ashamed of. Having PD is real and so is the depression that can come with it. I have told my husband (my caregiver) he has my permission to ask (when I feel like giving up in life) whether I’ve missed a dose of my meds. I can, within two missed doses, go from having a good day to wanting it all to end. It’s extremely hard, if not impossible, to care for yourself when your desire to keep going is all but gone. However, when your desire to live your life to the fullest is there, in spite of PD, this life can be a a pretty wonderful thing.

How can a life with Parkinson’s disease be a wonderful thing? As with any disease, it makes you take a different view of life. Your life, in particular. Where you may have once thought of yourself as insignificant, worthless, unimportant or any of those lies we tend to feed ourselves, you may now realize that you are of value. Why else would you be seeking out a doctor’s care? A support group? Because you matter. You may not have worked through the whys or the hows but somewhere, consciously or not, you have realized that your life means something.

Because your life matters, your quality of life should matter to the fullest extent in which you are capable. For example, if you can offer some time to one less fortunate – reading to a hospital patient, listening to a homebound veteran tell of his experinces – do it. Doing activities like this can often remind us that things could always be worse and how good it feels to be able to help another.

If you can sing, sing out loud. It’s good for the heart and for those with PD – it’s good for the voice.

If you love to do artsy things, don’t stop because someone told you have PD. If you have to change to a different art form, change. Just don’t quit.

Walk, if you can. This is good for the muscles, good for your heart, good for the spirit. If only intentionally around the house, walk.

Talk to someone. When we feel like a burden, we can often shut down. This is when I find it most hard to open up and when I find it most needful to do it. Let them remind you of the truth – you  matter. They’ll remind you that you are here for a reason and gently ask, “By the way, did you take your happy pill today?”

Living with Parkinson’s disease is downright hard. It’s a day to day battle of pain, a fight for control, and an acceptance of the unwanted. It’s learning how to live a new normal while everyone else continues with the familiar. It’s learning to realize you matter and there’s a reason you were chosen to carry this load, to walk this path. So, while on this journey they call Parkinson’s disease, take care of you. Take good care of you.

And don’t forget to take your happy pills.

If you’re reading this…
Congratulations, you’re alive.
If that’s not something to smile about,
then I don’t know what is.”

Chad Sugg, Monsters Under Your Head

Originally published 12/2016

I Don’t Feel Like It

I told a friend last night that I feel disconnected. Disconnected from the PD ‘loop’, ‘circle’, whatever. If you’re involved with a Facebook PD ‘group’, you know that there is a growing force of people trying to make a difference in finding a cure for Parkinson’s disease. They are trying to get people to step out of their comfort zones (for some) and get involved in fund-raising and bringing awareness to this debilitating disease.

However, I feel disconnected. Or perhaps a better word for it is… apathetic. Not intentionally. Not purposefully. Not willingly. I just do. And then I read this in the newest issue of the Northwest Parkinson’s Disease Foundation newsletter:

Barchester, UK – Apathy among people with Parkinson’s disease is a sign that the condition is getting worse, claims a new scientific study.

A new scientific study suggests that apathy shown by a person with Parkinson’s disease is a sign that the condition is worsening.

Research published in the Journal of Neurology, Neurosurgery and Psychiatry suggest that apathy can be caused by changes in the brain resulting from the condition, Parkinson’s UK reports.

The Norwegian study followed a group of 79 people diagnosed with Parkinson’s disease over a four-year period.

Commenting on the findings, Parkinson’s UK’s director of research Dr Kieron Breen said: “This is an important study that helps increase our knowledge and understanding of one of the common non-movement related symptoms of Parkinson’s.”

 

He went on to say that the charity’s own research had found apathy to be a common symptom, while understanding why people with the condition may be apathetic may help carers.

One in every 500 people in the UK has Parkinson’s disease, equating to around 120,000 people living with the condition, according to Parkinson’s UK.

So, perhaps my apathy is grounded. I surely hope not. Not now, not ever. I want to run this race in life well. I want to get to the end and know I did what I could with the opportunities I had and not look back with regrets. I want to be an encouragement to others and not a source of discouragement. But – sometimes we get too busy comparing our walk with others along the way. We feel inadequate if we aren’t doing what others are doing or prodding us to do. And that’s okay. Sometimes it’s not our turn to run. Sometimes it’s okay to walk and take your time. If we were all running at once, people would be getting shoved off the trail, knocked down and trampled on.

Maybe you’re discouraged today because you feel like you’re not doing enough to find a cure for PD or Alzheimer’s or Breast Cancer Research or MS or whatever it is you’re fighting. Maybe it’s your turn to walk. Maybe it’s time to take a rest on the bench and give/donate to someone who is more able to run this time around. Whatever it is – do something, no matter how small – even writing a note of encouragement to someone on the front lines right now, fighting for a cure. Just don’t let apathy take over and keep you on the bench.

 

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.