Parkinson’s Awareness Month

April 13, 2012 By Leave a Comment

In honor of Parkinson’s Disease Awareness month coming up, here is a popular re-post that was published a few years back. Enjoy!

 BE   A.W.A.R.E. - updated for Parkinson’s Disease Awareness Month, 2012

 

Aware: to be alive, wise, and sensible about something. To be knowledgeable, alert, attentive, awake, enlightened, informed, mindful, sharp of or about something. The opposite? To be ignorant, insensitive, unaware, and unconscious over or about something.

Before we (as people with Parkinson’s disease and/or caregivers of such) had this Little Monster come to live with us, how many of us were very concerned about Parkinson’s Disease?  We have all had friends and/or loved ones who have had an illness, disease, etc. where we have watched them suffer and perhaps then have become ‘aware’ of that illness because of what we personally experienced. However, it is usually not until someone close to us has a disease that is incurable, an illness that is unexplainable or a condition that is irreversible that we  become involved to some degree.

I have to admit, I did not know much about Parkinson’s disease (PD) until I started learning what was going on with me. The only other person I ever knew who had PD was an older friend of the family and I did not know him well. I remember watching him shuffle and hold his right hand as if he had had a stroke. He did not talk much and he would get extremely frustrated.

April is Parkinson’s Disease Awareness Month. A month to focus specifically on a disease that is presently incurable. To focus on advances made against what I like to refer to as, The Little Monster.

Being or becoming aware of Parkinson’s disease for me is a little different from how others may view the purpose of this month’s ‘awareness’ topic. In a sense, there are so many causes which we become involved in and aware of that it’s easy to sometimes lose the focus and attention that is needed to make a difference in just one of them. If there is not enough attention drawn to the topic, awareness declines. That leads to no funding which leads to no research, and finally, no cure. All to say, we all need to be ‘aware’ and make others aware, but I’m putting a little different spin on it for the purpose of this article.

For me, Parkinson’s Disease Awareness Month takes on new meaning. I need to become aware of every aspect of this disease in order to deal effectively with it. In the process, yes, I need to make others aware of it and how it affects the human race as a whole (with all its future possibilities) so that I can know best how to deal with the effects of the disease.

I cannot make someone else ‘aware’ of PD unless I understand it as best I can. I need to learn as much as I can in order to depart the wisdom to others who do not know much about it. Just having the disease does not qualify a person to know exactly what it is or how it is affecting or could affect you. We need to make ourselves and those we love ‘aware’ of it first. We need not to deny the fact that we have a chronic illness, but seek out relevant information so that we know the best way to live with and manage it. Now that you have had a snippet of what aware could or does imply (see above for refreshment), here is another way to look at it:

Be   A.W.A.R.E.

A – be Attentive – There are others who have Parkinson’s disease around you who may be feeling worse off than you do. Look and see. Encourage them. Send a note and brighten their day. Call and chat with them. Take them for lunch. Be attentive to others with PD. There’s less you can do than you once did, it may take a little longer, but you can still do something. Praise God!

W – be Wise – Knowledge is just gathered information, whereas wisdom is information coupled with experience. You have learned about Parkinson’s disease and you are experiencing it. Make wise choices that will give you a better life from here on out. Parkinson’s disease isn’t a death sentence but it can be a wake-up call for many.

Exercise.Tai Chi, Yoga, Water Aerobics, short walks, bicycling – these are all good ones for people with Parkinson’s disease.

Eat healthy. Contrary to popular belief, chocolate is not one of the four major food groups.  But yes, it should be.  You know the drill – stick as close to natural as possible.  Shop the outer aisles of your market – not the processed, oil induced, fake stuff.

Find a support group. Online or offline.  Don’t stop ’til you find a fit.  We all need support from those who have ‘been there/are there’.

Impart your knowledge that you have gathered and the wisdom gleaned from life’s experiences with a newly diagnosed person.

Those first beginning months can be frightening if you do not have much to go on and no one to talk to who truly understands.

A – be Alive – As mentioned above, Parkinson’s disease is not a death sentence. Does it complicate things? You bet. I was trying to plant seeds today – an activity I used to do alone. However, my fingers, hand, arm – at times they just will not do what my brain tells them to do. They do what they want and that is pretty much nothing. They refuse to hold onto things, to grasp things. So, I asked my husband to fill the pots with soil for the seeds we were starting, as I could not scoop the dirt. Did it frustrate me? Yes, but I had a choice.  I could ask for help and still be a part of the process or I could walk away, curl up in a chair, and just wait for life to end (maybe have a bon bon or two in the process). It is sad to say, but I know of people who think that is the only option a PD’er has left when diagnosed. I choose to be alive and not only make the most of each day, but enjoy each day as best as I can.

R – be Ready – Ready for what? A cure!!! No one wants a cure for a specific disease faster than a person with that specific illness. In order to be ready, we need to be active while we wait. Ready is a form of waiting. What are you waiting for? Get involved in raising awareness in finding a cure. It takes many people to make something happen. Thomas Edison didn’t really invent the light bulb alone – unless of course he invented every little part needed to make it happen. Nope.

E – be Extraordinary – While waiting, be extraordinary! I think this is my favorite part of the acrostic. Do not be ordinary – a person who complains with every pain, growls with every pill swallowed, fears what may come, or always has to be feeling the worst to gain the sympathies of others – be extraordinary! Push past the pain, take the pills faithfully with thanksgiving for medication that helps- at least they have made that much progress! Cast the fear aside – as best you can.  No one, not even the best doctors can tell you just how the disease will progress in you, so take one day at a time and be thankful that even though you may be shaken, at least you are shaking and living to talk about it. Lastly, if you are a complainer, life is too short to be spent in such a way. We all have burdens to bear.  For some – many. It could always be worse and for some with Parkinson’s disease, it really is. Be extraordinary.

 

Of course, we all know that ‘awareness month’ for any cause, disease, etc is to help others become aware of the specific topic being highlighted. So go ahead and enlighten others, spread the word, share the ‘awareness’, but take care of yourself in the process.

  • Be attentive to your physical needs.
  • Be wise in your choices.
  • Be alive, as you still have a lot to do and much to give.
  • Be ready, waiting and preparing for that cure.
  • Live in such a way that others will flock to you and ask how you can handle it so well when you lose your balance, shake, stutter and stammer. When that happens, you can smile and know… you are extraordinary.

Journeying with you –

 

Filed Under: Advocacy Tagged With: ,

The Little Big Blessings

September 22, 2009 By Leave a Comment

Photo by Sherri Woodbridge, ©2010

As my husband backed out of the driveway en route to the airport, the guy on the radio made a comment that fall was here. Did he have that wrong. Fall is gone where I live and winter has arrived. No more shorts and tank tops, flip flops or Capri pants. It’s sweatshirts, long johns, and wool socks from here on out.

I’ve already determined to stay by the gas fire this winter. Helps the aches and pains not ache so much.

So, oh yeah – my flight…

I realized again today that I have Parkinson’s disease. There are some days you get by with feeling like you’re sort of ‘normal’. Of course we all know that with Parkinson’s disease comes a new normal without instructions.

Realizing again that I have Parkinson’s disease means having to confront Little Monster – this intruder – face to face, whether I want to or not. Every once in a while I have to be reminded that you are different than other people your age. I look younger than I feel and I feel older than I am. Today was my reality check with the Little Monster.

I boarded the plane. So far so good. Got everything checked in. Got on the wrong plane. Got buckled. Found out. Got off. Got back on the right plane. Took an empty seat next to my flight mate who happened to have done the same thing. Embarrassment is always better with two.

We arrived in Seattle a little earlier than my original flight, which I would come to recognize as a blessing.

I didn’t realize how much I have slowed down. After exiting the plane, by the time I got to ground level, I had a following. It was much like when you’re driving up a hill in an old clunker. You’re going as fast as it will take you but not fast enough and there are umpteen cars lined up behind you, their drivers politely keeping their hands off their horns, their fingers out of the air, all the while hoping for a turn out so you’ll pull over to let them zoom by in their faster cars.

Well, today I was an old clunker. At least I felt like it. The line in front of me got further and further away as the line behind me got closer and closer behind until finally, I found a turn out and let them all go by.

There is a verse that says God works all things together for good. I got on the wrong plane by accident but it was one of those ‘things’ that God was working for my good. I needed that extra half hour after landing to get to the next gate, because while my spirit said I had just as much energy as those who had backed up behind me and were ready to race by, Little Monster mocked me and reminded me that sometimes – I’m an old clunker.

I boarded the next flight. This time the correct one. And we arrived on time. I got off the plane and went through the same thing. Backed up line – pulled over at the nearest turn out. I wanted to cry. I wanted to get a ride. I wanted someone to carry me. I wanted to be well.

But I’m not ‘well’ and though Little Monster threatened to laugh in my face and remind me that I can’t do what I used to, I didn’t cry. I didn’t get a ride or have anyone offer to carry me. Instead, I kept walking, realizing I’ve arrived at a ‘new’ normal, yet again.

I am slower and my steps are shorter. Some call it the Parkinson’s shuffle. But, this new dance—this shuffle—it’s part of life—my life. My new normal. I can view it as a monster or, I can see it as a blessing in disguise. After all, the slower you go, the more you see. And there’s so much to see when you’re not in a hurry to zoom by the old clunkers that seem to hold you up from going through life at a faster pace.

Next time this old clunker is running slow, I’ll pull over again and be thankful for smaller steps and the opportunity to see what others may miss. Especially if I’m on the wrong flight.

Journeying with you,

Filed Under: Encouragement / Inspiration / Humor Tagged With:

Sweet Dreams

July 9, 2009 By Leave a Comment

Photo by Sherri Woodbridge

While I have been compiling a booklet regarding Parkinson’s Disease (which, by the way, seems to be taking F-O-R-E-V-E-R), I have been learning much more about the disease I often refer to as Little Monster. More than I cared to know, I might add. I have been told that Parkinson’s disease doesn’t kill you and – that’s true. The part people don’t add to that statement is that although it may not kill you, it can hinder you from fighting off other things that will kill you. Sort of an ‘accessory’ to the ‘crime’, I guess you could say.

My husband and I went for ride yesterday out in the country. It was a gorgeous day. Fields and meadows, a slight breeze. We dreamed our way through the little roads just out of town and ‘oohed and ahhed’ over homes that were for sale that we were going to buy when we become millionaires. Then as we were driving down a straight stretch, lined with birch trees, I remembered the things I’ve been learning. About the ‘end’ times.

A tear rolled down my cheek and as I wiped it, my husband noticed and asked what was wrong. I told him I’m scared. He didn’t understand. I explained. He tried to encourage me as best he could, telling me that may not be my story and if I do get to a point where I can’t work in my garden or enjoy our million dollar house (we wouldn’t really buy one that expensive, would we?), with its in-ground swimming pool and waterfalls, then my nurse (I’ve got a nurse?!?) can wheel me out (I’m already in a wheelchair?!?) to the front porch to enjoy the view. I can tell my ‘caregiver/nurse’ what things I want her to do in the garden and watch (but I can’t speak-don’t you know I won’t be able to speak?!?). He did shortly thereafter.

“Oh,” was his reply. Oh?!? Not a good answer.  I’m scared to death.

Does anyone realize how much torture that will be for me? I must make it clear at that point to just take me behind the barn and shoot me.

So, there I sat, pouting. My life was over in a matter of seconds. I was possibly mute and if not, an invalid barking orders to my staff who was working in MY garden, while I sat in a wheelchair watching and there was nothing I could do about it. All the while, my husband was doing laps in our swimming pool and enjoying freshly squeezed lemonade on the side, playing with my Boo and all the other grandchildren that had been born and I couldn’t play with.  Super pity party.  Super real.

It’s hard living with a chronic illness. It’s hard to live with any illness – never knowing what the next hour will bring, let alone the next day. It’s scary. It’s like handing over the steering wheel, reluctantly, asking – always asking – ‘Can I drive now?’ It’s like going down a river on a raft without the paddles and wondering if a water fall is around the corner, some rapids, or will it be calm water. Each day is different as each moment unfolds. You have no control.

As we continued down a dream, I snapped into reality. I can still dream, I thought. And then I noticed how green the fields around me were. And the view. The views were absolutely magnificent. And it was if God whispered, “You’re alive. Right now. You have today.”

And you know – He was right. Right now, I am alive and I have today and it’s a good day. I may hurt, it may take me five minutes to get out of this car, I may still be taking 20 some pills a day – but right now, I have today and I am going to live it to the fullest.

We headed home, and as we drew near, I had another dream. I didn’t have Parkinson’s and I was sipping lemonade on an inflatable giraffe in the middle of my pool, watching someone else pull weeds and you know what?  I smiled.

What’s your dream?  What makes you smile?

Journeying with you,

Filed Under: Encouragement / Inspiration / Humor Tagged With: ,