By: Sherri Woodbridge
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:
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.
Reprinted with Permission from Parkinsonsjourney.com.