Never Give Up

Beach Bikes
Photo by Sherri Woodbridge

When a large group of people with Parkinson’s was asked to give advice to others who were recently diagnosed with the disease, the overwhelming response of over 200 responses was “Exercise! Keep moving!” But that wasn’t all. There were many other advisements freely given, but what struck me was, it’s easy to give advice, but how does one follow through? How does a comment like “Live your life” help someone? Sometimes you have to explain or show the person with Parkinson’s disease what “Live your life” looks like. And it won’t look the same for someone else.

How do you…

  • Live your life? One day at a time. Sometimes one moment at a time, without focusing on the ‘what-ifs’. Focusing on your fears or the concerns that PD can create, takes your focus off the present. And the present is where the living occurs. So, if you’re still mobile, get that dog to take you for a walk and if you’re not, put some upbeat music on and read something positive.
  • Educate yourself? Everyone ‘googles’ but that can be a scary start to gathering information on Parkinson’s disease. Start with specific websites like the Michael J. Fox Foundation, which (in my opinion) is overall one of the best.
  • Find a support group? Either locally or on the internet. There are several on Facebook which are ‘closed’ meaning they don’t allow people without PD in and it’s closed to ‘viewers’, meaning you have to be an accepted member to see what’s posted. Type in ‘Parkinson’s disease’ in the search bar and you’ll get a list of different PD groups. Local support groups in your area can be found by visiting the Parkinson’s Foundation website. It’s invaluable to be able to connect with someone who’s on the same or similar journey and trying to find their way. It helps to remember that you are not alone.
  • Find a Movement Disorder Specialist (MDS)? Some towns just don’t have one so you have to determine how far you’re willing to travel. Anyone with PD will tell you a good MDS is worth their weight in gold but if you’re unable to find one near enough to you, a good neurologist can help just about as well. Some tips: Don’t settle with the first diagnosis. Always get a second. Don’t settle with the closest neurologist or MDS. Drive the hour or two or three if you have to. It’s worth every mile. Ask your support group who they go to.
  • Exercise? This one suggestion on what advice to give a PD newbie was overwhelmingly at the top of the list of over 200 PD’ers surveyed!!! Start by discussing the topic of exercise with your doctor. We are all in different physical shape and what may be beneficial to one may be a bone breaker to another. I think one of the overall safest things you can do is walk. Keep your eyes focused in front of you so you can see any cracks or bumps that may trigger a fall. Take your well-behaved dog to help steady you or take a walking stick for balance. Whatever you choose to do – walking, cycling, boxing, dancing, Tai Chi – just do it! The earlier you start exercising, the better off you’ll be. As one person put it, “Exercise like your life depends on it because it does.” Move it. Move it. Move it.

Talk about it? You can start with a close friend and perhaps you’ll become so well educated you’ll be talking to hundreds at a time! This is where support groups shine, because you can talk about your experience without judgement, get new insight, not feel isolated or alone, and are surrounded by others who really understand.

Some advice that doesn’t need any input:

  • The more you stress the worse the symptoms
  • Take your meds on time
  • Cry when you need to
  • Everyone’s journey is different
  • Exercise.
  • It’s okay to ask for help!
  • Give yourself time to get your head around the diagnose. Allow yourself time to grieve
  • Don’t overthink having PD. Don’t dwell on it.
  • Keep a sense of humor. If you’ve never had one, it’s time to get one.
  • Try to stay away from stress. Stress makes PD symptoms worse. Eliminate what you can out of your life.
  • Discipline yourself. Get what info you can on PD and then make a plan. Get a routine on taking your meds on time. Keep a log/journal to take to your appointments.
  • Pray
  • Exercise.
  • Stay away from Dr. Google.
  • Exercise your brain as well as your body. Word games. Number games. Play games with your grandchildren or your kids or friends!
  • Don’t let it be a death sentence.
  • Never, never, never, never, never give up.

And… exercise.

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

My Little Boy Blue

It feels like I have no purpose.

I can’t write when the ideas climb inside my head. Insread of taking root so that I can grasp them, holding them captive in hopes of putting them thought to pen to paper, they disappear like the dead leaves that lay on the ground, crisp, full of beauty, and blown away by the first good gust of wind that blows through my mind.

Which happens more than I’d like.

Frustrating.

About the time my meds kick in to where my fingers will obey ME and not the dopamine deficient brain inside of my head, something distracts me, vies for my attention, insisting it’s importance and shoves any previous thoughts aside, to wait for another aforementioned gust of wind.

After the wind dies down and I remember I was telling myself I have no purpose, the back door opens to sounds of a little boy in rubber boots and a boy-blue raincoat. And he’s ready to go play. And jump in puddles. And make brownies. And clean the shower with his own spray bottle. And have a stuffed animal pillow fight. And go looking for acorns and watch the squirrel take the ones we leave for him atop the fence. And ‘Hi-Yah’ plastic bucket towers. And watch Agent Oso.

And suddenly I realize just how much purpose I have. And somehow, I am able to do it – care for this little grandson of mine – with or without this little monster that lurks inside that strives to insist that no one wants to bother with me anymore for I can be just that – a bother, a burden.

I can’t do this and I can’t do that and it’s…

Frustrating.

So very frustrating.

I must repeat words. Constantly.
I must go slow. With everything.

Or so it seems.

I can’t busy myself with many wonderful chores or talents or projects that friends still do that I no longer can. But you know what?

It’s okay. Those things are no longer my purpose. And while sometimes I vie for the moments of painting again and leading children’s choirs and women’s groups, driving on field trips, teaching Bible studies and more, I do have a purpose. A most wonderful purpose.

That little boy in blue.