I Hope You Dance

I have been so incredibly blessed all of my life. Even in extreme hard times God has always made sure I knew I was loved and that everything was for a reason...just believe. It seems when I settle into a routine as I have with Parkinson's then he brings something else along to stir the pot again. A new friend or old friend, an idea that won't go away no matter how silly it seems and then there's my wheels. Not chair wheels, car wheels. since at least March or more I have been without a car and trying to get to doctor appointments for me and my mom and keep the household going. I did well until the last month and things begin to pile up. Missed appointments because I had no one to take me and I just wanted out...Out for a drive, out to be by myself....just OUT. Well today I did it. My car is here and I am ever so proud. The dealership has been very special through all this. I knew just what I wanted and they would get it and it would be gone or it just was a little not right. Well she is here. A beautiful pewter color with all the bells and whistles and I am "On The Road Again" It would have been so easy for me to give up this time. The pain is severe again and my walking is not as good as it could be but, nope, I figure I have another dance in me. If you are someone reading this who feels they have come to the end of their rope and there just is nothing else exciting that could possibly venture into your life....your wrong. When you least expect it, a change will be offered to you.....a chance to dance and I hope you do.....love Pokie

Hard To Dance Without Music

I spent the night last night wandering the halls of the Internet checking the problems and joys of the World and am so disgusted at the treatment of America's Seniors. I am a senior at 63 and proud to be so. I have lived a very full and eventful life and now in the last quarter(as a friend of mine refers to it) you have the gift to look where you have been and the sense to fear what is coming. Some are lead to believe that that fear is based on dying, for me, not so. The fear comes from having to swallow every bit of your pride to beg for help and finding out no one is either listening or cares. You are a disabled senior, on a tight rope and no net below. Some already in free fall pray for death so the suffering stops.....not from pain but stress. A man is taught from day one to grow up and take care of your family, no matter what. He works his entire life thinking, I'll give this everything I have and when I retire I'll rest......WRONG. The American dream is no longer there benefits are being cut, insurance is being taken away, patients are taking their medication every other day because they can not afford it on a daily bases or are sharing it with someone who can not get it at all. That same grown man finds it har to support a family now but in his senior years find s no peace at all......the rug could be pulled at any time. In the rush to bail out Bankers who will never experience these problems, and bail out a failing economy, and put people to work....WHAT HAS THE GOVERNMENT AND SOCIETY DONE? They have taken the very foundation of the U.S.A. and disgraced it. In no other country in the World are the sick and elderly treated with such utter disrespect. When America's seniors are gone who will tell the stories and answer the questions. This generation and the one to follow is so busy the stories are never remembered and the events never happen.....and those SENIOR GENES. Those are the genes that will unlock what has went before for future breakthroughs BUT if a person cannot afford to buy his medication , he will skip doctors appointments and will not have that extra test that just might be the one that held the answer. I grew up under a very strict Scotch-Irish/Germany background. And the first thing I learned was to respect my elders ALWAYS. I'm so sorry but I see no semblance of respect in anything going on in America today toward seniors, disabled,un- insurable families.....Some of the answers on Patientslikeme have been this:

1. Wish i was smart enough to come up with a real definitive answer...but everything is just so screwed up....

2. If the gov't gets into many more things...we will be robots. Get up eat, go to bathroom, eat and sleep and keep your mouth shut..sorry. I can take alot of abuse and have in my lifetime but have never been able to stick with a liar. Once and I'm gone....absolutely no tolerance. That leaves me nothing in politics anymore....

3. How many are willing to get the power scooter and tell it like it is??? the squeakiest wheel gets the grease.......who squeaks the loudest????

4. where are the free clinics?

5. I lay awake at night trying to think of a way not to end up in a state run nursing facility where who knows what might happen to me.

In closing I can only pray for help for our Veterans that fought for nine years for agent orange benefits and the veterans coming home now with no legs and no arms to what. They fought for our rights and then our government takes them away.....Somewhere there must be an answer but only God knows where....love POkie

UNITY QUILT 2009 - charlene's MySpace Blog |

UNITY QUILT 2009 - charlene's MySpace Blog |

Diversity

As I was wading waist deep through my email, tonight, I realized there is one very large thing we with chronic diseases are doing WRONG. There is a storehouse of information that applies from one disease to another that we are not taking advantage of. For instance, using the information furnished by the Christopher Reeves Foundation to help me live with Parkinson's Disease. I read in their forum of a fifty one year old couple who have been together since high school. For the last 15 months they have been learning how to cope with care giving and their fears of what lie ahead. As I was reading this I was struck by her love for her husband and how brutally honest she was able to be about the consumption of her time to keep their family going. All she said is universal...whether paralyzed or disabled in another fashion. Yet so many will never read her words because the Christopher Reeves Foundation is not a regular stop for Parkinson's Patients. This is not helping us toward a cure on any front. As patients and caregivers we must be constantly vigilant of new areas for information for all concerned. Tonight in my travels, I have learned very good tips on traveling with a wheelchair, the news on new physical therapy, and a love story that brought tears to my eyes.

My interests are so varied, as you can tell. Colon Cancer is very high on my list as is ALS and MS not to mention Epilepsy and all the many rare neurological diseases and in the past few years I have learned that the more you reach out the more you receive. Try this today or soon and reap the rewards. Branch off from your main concern and check around somewhere else for NEW MATERIAL, a new insight on an old disease. someone Else's viewpoint. There is so much out there that can be cross referenced and used to your benefit.

This is a quote I found tonight: "There is something about our spirit that drives us toward life. Just as a tree sprout will grow toward the sun, we are drawn toward wholeness." and in that growth we must be ever conscious of the helpful forces there to nurture and sustain our growth. That sprout will never make it on his own but with God's help and support from his surroundings...he will survive and thrive. Have a good day......love Pokie

Colon Cancer Today

Off Days, or Just Between........

Does everyone have days like this or just people with Parkinson's? You sit in the chair believing that you will get up and do something constructive and yet you stare mindlessly at the television and hear not a word that it is trying to tell you. Huh? seems to be the word for the day as everything anyone tells you has to be repeated. Every time you sit down you nod out. I wonder if I am physically tired or mentally tired or both or bored.....Please not the dreaded bored....I fight boredom more than anything else simply because one of my college professors told me that only the stupid should ever have any reason to be bored. So with that thought firmly implanted in my brain, it has been my life's journey never to be or appear bored for fear of someone calling me stupid. Why do we torture ourselves so? I really have no idea but it is a hard habit to break this believing every word the general public tells you is the gospel truth. So often it is far from the truth. When you have Parkinson's, it is not long before questions start forming in the back of your mind about your medications and just your general care which leads to a huge amount of daily research and reading. While doing all of this, I have to constantly try to be objective and not gullible. It's a great blessing that these days never last more than a day and are usually preempted by extreme fatigue so if I do not fight it and curl up and sleep all day...I am cured. My guess God has a duel purpose for sending these days our way....rest for one but more important to clear the cobwebs out of the attic and clean up a little up there. I am sure a clean attic will bring on clearer thoughts and thoughts of value to others and not just me....So with that I will sleep well tonight and be up early tomorrow for Coffee With Me....love Pokie

Happy Purple Day

As most everyone that reads the things a write knows, I am a very proud grandmother of six. One I lost to Sids many years ago which left five to frolic and play at the farm in the summer and weekends. Maybe because of Kane and the Sids or maybe because of me and Epilepsy and Parkinson's, I spend a huge amount of time watching how they respond to different things around them. Even before they were born I was a storehouse of questions on movements, hiccups, kicking. I'm always looking for something I never want to see. I'm always studying my diseases and friends are always sending me articles on the subjects to keep me well informed for my blog writing. This is how I met Cassidy Megan who founded Purple Day for Epilepsy which gives everyone one day in the year to put on your purple and educate and be educated about Epilepsy. My favorite is young children, third or fourth grade. Epilepsy at any stage is extremely scary. You never know when a seizure is coming and when one comes you usually loose body functions which is totally embarrassing for young and old. but i think worse for the young because the young are so hard on each other and put up almost impossible hurdles for others to conquer in order to survive in their group. If your young and your worried , you have seizures and your different , then you stand out.....considered not good among children. On Purple Day Cassidy is a PEER factor instead of a FEAR factor. They become more educated and more tolerant...The myths are dispelled and the student with Epilepsy is given a chance to be seen in a normal light. March is Epilepsy month and somewhere in that month will be PURPLE DAY 2011, but don't wait. Plan a Purple Day and raise funds for research. Do something to help and include that child with Epilepsy in....It will make you smile inside. love ya Pokie

The Rose

This song seems to be haunting me and usually that means something very important is there I need to know. Let's try it again and see:

THE ROSE

Some say Love, it is a river that drowns the tender reed.

Some say love, it is a razor that leaves your soul to bleed.

Some say love, it is a hunger, an endless aching need.

I say love, it is a flower, and you the only seed.

It's the heart afraid of breaking that never learns to dance.

It's the dream afraid of waking that never seeks a chance.

It's the one that won't be taken who cannot seem to give.

And the soul, afraid of dying that never learns to live.

When the night has been too lonely and the road has been too long.

And you think that love is only for the lucky and the strong.

Just remember in the winter far beneath the winter snow...

Lies the seed that with the sun's love in the Spring become the Rose.

Everyone is entitled to one Rose in their lifetime yet so many bounce from flower bed to flower bed never finding fertile ground to grow in or their shell is too hard to penetrate so love can sprout. How lonely to spend your life looking for something and then find it to be so close at hand......A neighbor or workmate a friend or lover long gone years before. If we take the easy way we gain nothing....in love or Parkinson's. For today, try stepping just a litle out of your comfort zone. Call someone you once loved. Look Parkinson's Disease straight on and dare it to come forward. Dare to be strong and take charge. Yes, it's a scary place to be but the rewards are great...remember these quotes I have learned over the years:

The elderly don't regret what they do but what they don't do.

There are many people walking around dead and don't even know it.

We do not stop playing because we are old, we grow old because we stop playing.

It's never too late to be all you can possibly be.

To grow older is no problem. To grow up is another problem.

Good luck with your adventures and smile love pokie