I want to share two videos that have greatly encouraged me this week and I hope they do the same for you.
Do you ever wonder what happens to the bloggers who started strong, persevered for a time and then just disappeared off the face of blogosphere?
I was updating some information on my blogs the other day and was checking the list of some bloggers I once followed. When I went to their sites, I noticed their last posts were all over three years ago – or longer.
What happens to people who just disappear from the blogging world? Do they lose their steam? Their desire to write? Move on to other things, other fads? Are they now “Vlogging”, as seems to be the next phase of the blogging world? And if they’ve moved on to other things, why do they leave their site open?
I understand the part where you lose your steam. Some days are hard trying to keep up with a blog. I try to keep up with two and where it used to not be so difficult to do, I now find my self struggling to do it, as it is much more difficult to type. Yet, my desire is still there. I haven’t moved on to other things, other fads and have even contemplated Vlogging at times, becoming the next Casey Neistat of the Parkinson’s world. But I have to find myself some really cool sunglasses first and a really, really, really humongous loyal following. I only need like 3 million more people. That’s all.
I first started blogging about Parkinson’s disease the year I was officially diagnosed. It was sometime in 2004. A lot has happened since then but the aim, my focus, my purpose or mission as I see it, was to write about my journey along the way so that others with PD might be encouraged and know they are not alone in this battle. My focus or aim was never to see how many followers I might have tag along or if I could make my blog a money machine. It still isn’t. My goal remains the same: to encourage others in their journey and to let them know they are not traveling this journey of PD alone.
When I first started out, my blog name, Parkinson’s Journey, was easy to claim, as there were literally a handful of blogs about PD. The Michael J Fox blog hadn’t even been invented yet, nor had the blogs for American Parkinson’s Disease Assn, or many of the top PD websites that have been on the internet for some time.
It seems blogs for PD or Facebook groups on PD have swelled into existence in just the last few years, as I am sure is true for other diseases, causes, etc. Everything has swelled on the internet! In fact, the name of my blog, Parkinson’s Journey, has swelled as well, taking on several different varieties using Parkinson’s and Journey in their name.
And so I glance through Facebook and Google (or wherever) to see if there are new blogs or websites on PD that I might add to my list of references for those seeking information on PD, sometimes I find an oldie that is now laying dormant or I find 25 new ones. And so I clean up my list and am thankful for the changes. I can’t be everything to everyone, nor can five or six of us. I appreciate that there are others who are sharing their stories with others. The patients, the caregivers, the doctors and more. We all have a story to share/tell. Where others may be able to reach, others may not and that is why, as many who can tell their stories need to.
It sends the message that others who are fighting this disease are important and you are willing to share your journey if it means making their journey just a little bit easier.
That’s my purpose. That you, as a co-journeyer, know that we are on this journey together and you are not alone.
I have to admit, I didn’t know much about 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 didn’t know him well. I remember watching him shuffle and hold his right hand as if he had had a stroke. He didn’t talk much and he would get extremely frustrated.
April is Parkinson’s Disease Awareness Month. A month set aside to bring awareness toward a disease that is presently – incurable. To focus on advances made against what I like to refer to as, Little Monster.
Being or becoming aware of PD 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. So, 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, PD 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 will be making others aware of it and how it affects the human race as a whole, (with all its future possibilities) as I am learning how I can best deal with this disease.
I cannot make someone else ‘aware’ of PD unless I understand it the best that I can, myself. 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 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, here is another way to look at it:
Be… A.W.A.R.E. …
A – be Attentive – There are others with PD 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 those around you. 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 PD and you are experiencing it. Make wise choices that will give you a better life from here on out. PD isn’t a death sentence but it can be a wake-up call for many. Exercise. Eat healthy. Find a support group. 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, PD 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 – many days 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 couldn’t scoop the dirt. Did it frustrate me? Yes. 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. It is sad to say, but I know of people that 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 faster than a person with an 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. Not.
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 most sympathy of others. Be extraordinary! Push past the pain, take the pills faithfully with thanksgiving for – at least researchers have made that much progress! Cast the fear aside – no one, not even the doctors can tell you in certainty just how the disease will progress in you, so take one day at a time and be thankful, for even though you may be shaking, at least you are shaking! Lastly, if you are a complainer, life is too short to be spent in such a way. We all have burdens to bear. It could be worse and for some PD’ers, 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,