Taking Care of You

imageI 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 seek 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. Talk to someone. 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 meds.

“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

Looking the Part

imageInvisible disease:
A disease that is not necessarily visible to the human eye; hidden; concealed from others.

Parkinson’s disease (PD) can be known as an ‘invisibile’ disease. Because PD is most commonly known to be a disease that is known by tremors in the extremities and shaking. For those that don’t realize that there are some patients of PD who don’t actually experience the shaking or tremors, it can seem the patient is “faking it” or “isn’t that bad.”

Ever heard those comments?…

I have heard of some people with PD who take over fifty pills a day just to feel ‘normal’ and I can assure you that their ‘normal’ is much different than most everyone’s normal. Instead of having obvious tremors in the extremities, a person with PD can experience tremors on the inside, making it even more incomprehensible to someone who doens’t knwo much about PD and assumes you must have tremors to have the disease.

“But I do have tremors,” the patient may defend. “You just can’t see them. They’re on the inside.”

The other person is probably thinking you’re crazy. But it’s true and when I think back to when my symptoms began, I can remember feeling tremors inside and feeling like I was the one going crazy and feeling I couldn’t do anything to make it stop.

“But you don’t look sick,” your friend might comment.

What does a person with PD look like?

Well, one can have brown hair and blue eyes, forty-ish, have tremors and nothing else. One can have gray hair, 72 yrs of age and walk stooped, shuffling their feet, seem a bit confused, have tremors and more. One can be an athlete, run marathons, never seen to have a physical problem in the world. There is a saying, “If you’ve seen one person with Pakrinson’s, you’ve seen one person with Parkinson’s.

When I went to the World Parkinson’s Congress a few weeks ago, I think the thing that struck me most was the diversity how PD affected the people with the disease. No two people wore it the same. I have PD and you’d think I’d not be surprised by that, but I was. But, going back to the invisible disease thought and knowing that PD is an individual disease, you’d think it wouldn’t have surprised me to hear from several other PD patients, “You don’t look like you have PD.”

So I ask again, “What does a person with PD look like?” Maybe I should ask, ‘What is a person with PD suppose to look like?’

Most people would undoubtedly bring Michael J. Fox to mind, using him as the ‘poster child’ for a frame of reference. The only problem is, he kept his disease hidden from the public for a good ten years so while it was progressing for those first years, he “didn’t look like he had Parkinson’s.” He didn’t “look sick.” He didn’t “look that bad.” Maybe he was “faking it.”

“Smile. It can’t be that bad,” I have heard someone say to me. How do you explain to an absolute stranger that you have a disease that takes away your smile and even though you may be overjoyed on the inside, you don’t appear that way on the outside? How do you explain that yes – yes it can be that bad when your meds aren’t working well and you can barely move your back and neck due to the stiffness and pain and you could go on and on but you don’t.

You don’t look “sick” when you are struggling with heart issues, Alzheimer’s disease, a kidney problem, find a lump in your breast, deal with twisted intestines, suffer with hemorrhoids – need I go on? And yet, we can have a bad case of acne, a broken arm, a wound that won’t heal, or a dislocated shoulder and you’re not sick.

There is a crazy misperception that in order to be sick, the rest of humanity must have evidence that convinces them you’re not faking it and it just may be worse than they understood it to be. A disease they couldn’t necessarily see and you, as the patient, may not be able to fully explain.

An invisible disease. A disease that may not look like anything, but if you’ve got it, it’s something indeed.