Happy Holidays.....

Here we are, so few days left til Christmas and, probably, so much to do. The weather in Illinois is not co-operating in any way for someone with a new hip. The nineteenth of November I had my right hip replaced at Barnes Jewish Hospital in St.Louis by Dr. Nunley and his staff and I can only give them all of my thanks and love for a excellent job done. I was out of the hospital in one day and have never looked back. God has given me a new chance to see His world and do His work and I SHALL DO BOTH. Exercise and healthy food and loyal support has brought me this far and I look forward to the future, MY FUTURE, as I have not looked forward for years. I would be lying if I told you I have no pain, but it is in different places and for different reasons. I now exercise at least an hour a day and though I have never been high on exercise, I can see and feel it's results. I now have one very strong leg and one with PD.....two arms with very little strength in either and a back that could go at any time. With PD, arthritis and epilepsy, this could be screaming"Go to bed and stay there." I refuse and so does someone who loves me very much. I want so to walk upright and shine in his and God's light. The main pain now is upper body and so stretching and arm pulls are ever so important and THEY HURT doing and after but some day they will no longer hurt and a I will be stronger...I would love to do what "Ellen" does when she sits down. She holds herself up by her arms for just a moment. Now granted, she is much smaller than me but, this is my goal and I am keeping it. In the middle of all this jabber, I would really like to wish yo one and all the happiest of Holiday Seasons and hope you all know I believe in your ability to fly no matter what chronic disorder you own and try to live with. Peace and Patience, my friend.....and Hope for the New Year. Love Pokie

Continuing Success

The "Wow Days" just keep on coming. I am just totally blessed and ever thankful to My Maker for his trust in my abilities and persistence in leading me on to higher ground. Just when I think I can not possibly climb one more mountain successfully, the challenge is made and I succeed. I have battled walking for over ten years, and was continually told surgery was just to risky and why would I go through it anyway because people with Parkinson's don't heal well, people with Epilepsy seize under surgery and pass on and besides that your going to be in a wheel chair anyway......Well, bull. November 19th surgery to replace my right hip after having both knees replaced five years ago and today, not two weeks later I have 21 staples removed and am walking beautifully with a cane. I have already walked one half mile at the gym yesterday and the incision has no drainage or swelling and is completely closed. Yes, I have goals and high ones and I am bull headed but it can be done and I am and will continue to be living proof you can live with PD with Quality of Life.....IF YOU FIGHT AND FIGHT HARD. I am by no means doing this on my own. My Lord and Savior has been prodding me like an old mule for quite some time. My friends from everywhere have called daily and kept me continually in their prayers and my doctors.......THE BEST. Barnes Jewish in St. Louis, Missouri, Dr. Nunley and his staff, Dr. Max Benzequen and staff, home care and physical therapy have all given me a new life to say the least and I have no idea of throwing it away.....So many new opportunities have opened up just this week that every day from now on will be jam packed with service to My Almighty but pursuit of a cure and help for chronically ill patients everywhere also. Thank you again everyone. Love Pokie

connections

It's 12:15 and I should be fast asleep and dreaming of someone I hold so dear but, here I am seeking companionship in my computer. What do people do who have no connection to the world and have these horrible diseases? My pain level is around nine tonight and with every movement comes a sound from far inside me. It's the same sound tennis players make when they hit the ball. My sound gains me no point and sometimes never even moves me. My decision is what pill do I take to gain me a peaceful co existence with the world.....Is it Zanex to sleep or hydrocodone to mask the pain. Then there is always the chance that my seizure medication could bring me some relief. When you have a chronic illness the medical world supplies you with an endless group of narcotics which might "help get you through the night" But then you have me who would rather not take medication in any form and will quite often put off medicating some thing until the pain is so intense that it takes forever for relief. I can only voice my opinion on the whole medical world as I see it today....Pray for us because we are in big trouble. My big hope was in the stem cell research fjeld. Just when it was obvious we were making huge break thoughts, a federal judge bans all future research. How can they do this when you can place a stem cell quantity in a patient and the cells grow and function....This means quadriplegic can have sensation in their limbs after many years of vegetation. Medication is being shared b cause of the cost. People are going into the hospital with one disease and never coming out because while in there they get a foreign virus and it kills them. Where does this all stop? Maybe only the heavens know........ Love Pokie

ALS TDI

Two days ago I traveled to St.Louis, Missouri for one of the most informative and interesting seminars I have been to in some time. I dawned my Patientslikeme.com shirt and drove to a meeting on ALS. At this time not knowing what to expect but always wanting to learn about Neurological Disorders and know this is the one place to go for straight answers. Why me with Parkinson's? Because I have found diagnoses change and what applies to one Neurological disorder often applies to another. So many of the symptoms for ALS and MS show up in different forms of PD. The title of the seminar was "Brick and Mortar" Non profit B iotech's Opportunities for Preclinical Drug Development. The statistics are staggering...30,000 patients in the U.S., 5,000 plus every year...Those diagnosed have a 50% mortality rate in 18 months and some 20% survive 5 years. This disease can be sporadic (90%) or genetic(10%). Thank heavens if you are diagnosed with ALS you have a wonderful place to go for clear and caring information for both you and your caregiver by going to . ALS TDI focuses on two things molecular mechanisms of disease onset and progression and therapeutic development.ALS-TDI was founded by The Heywood Family in 1999 and has an annual budget of $10 million with 42 employees and 25 full-time scientists. The driving principle behind all of his is: To combine power of a 501(3)c non profit with the best practices of a for profit biotech or pharmaceutical company in the hope that the productivity gap will be breached and a cure or better treatment found. If you are interested and you should be. check out the ALS Forum: The largest Online Discussion of ALS Therapeutics 3,000+members 40,000 posts Topics include Therapeutic and Clinical Trials to living with ALS and Advocacy. All of this comes with the chance to be anonymous, open to the public and it's FREE. Let me give you some numbers and sites and you check it out: Questions and Comments? info@als.net 617-441-7200 or www.als.net/forum or Patientslikeme.com

Making the Most of Everything.....

I know everyone if so tired of hearing about the economy and how bad things are. I am more tired of hearing how the government is going to fix it for us. Why must we wait on them to spend more of our money and we reap less return. I am not talking finances but I am talking things we can do for our own well being and contentment that can make a big difference in our lives. We as Americans have so much and for some have Had so much and are losing it. Take a look around you. Say you are a senior citizen, in a small apartment on limited income and see few visitors. I will call you Jane for today. Jane has a sunny window in her living room that faces nowhere but the sun. In front of that window Jane could position a small table and saving fast food containers or other containers that holes can be punched in the bottom for drainage. Scavenger up some dirt from areas around you. It won't take much and if you drink coffee ....save your coffee grounds. get you some cheap seeds. They are being marked down now..thinking the season is over BUT you can play around with this all winter. My mother saves a salad tomato plant all winter last year and we enjoyed fresh tomatoes ever so often. Try lettuce and onions, herbs maybe some small flowers. Nurture these plants and their surroundings and when you harvest for a meal, make it a special affair. It's only Jane in this apartment and I have it on authority she talks to her plants and waters them daily, in return they keep her busy year around. If you have excess for one, freeze it and take it out later for soup. My grandpa use to tells us to pull up our boot straps which coming from him meant "toughen up and make things work for you." I know this is sorry times for seniors and many, many of my friends are suffering daily. But we baby boomers come from good stock and can make good if we set our mind to it. Don't be afraid to try. love always Pokie

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

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

Two Mustard Containers

I woke up this morning, as it always happens, with the weirdest things running through my head. This happens because I suffer from Nocturnal Seizures so they say and my brain stays quite active though I think I am sleeping. Yesterday my family treated me to lunch with all the trimmings on "our back forty"by our lake. My contribution was mustard and catchup. Nice Huh? One of the nicer things about Mother's Day. But anyway, this morning I had two what appeared to be empty mustard containers on my kitchen counter. I started to throw them away and then got this wild idea to cut them in half and see just how much mustard was left inside. I know I'm loosing it, but there was enough in one to fill the other half full...really and I would have thrown them away. Not that I was that concerned about the catchup or me starving, but something about the whole process bothered me. What if we always just operated at half our capacity or finished when we were half done....How about if we only tried half hard to do anything and and then gave up and chucked it...Is that where the world is headed? What happen to the satisfaction of knowing that you completed a job and did it well and went to bed bone tired but satisfied.....All this is coming from my two now one mustard bottle from Mother's Day. Is it safe for me to venture on into my seventies, or will I be tormented by questions of evolution and space science? Losing brain cells in one place must be causing overload or confusion in other places. Well there are surveys to be taken and other things to FINISH and I am sure the since of accomplishment is just around the corner, so with that I sign off for a glass of milk and a cookie...love ya Pokie

April Means Parkinson's

It seems impossible that it has been three years since this picture was taken and purely by chance did it and I turn out in this fashion. I was at St Louis Airport waiting to get on a plane to New York City by myself, much to the dislike of ALL my family to meet total strangers from the internet.....me a retired goat farmer from Illinois who knew nothing of New York City. I had made all my reservations myself and was determined to go to the Parkinson Unity Walk in Central Park. My daughter escorted me to the gate and looked like the world was coming to an end as she took this picture. Little did I know that in the back ground it said "Turn to God". I was only a shadow in God's light from then on. The last three years have been filled with people no one could have told me were coming into my life. I have been to places I would have never been. I have been so sick I just knew I was dying and some how lived for another day and another adventure....and then there is my passion...Unity Walks. This year is the 16th annual and I am team captain of Team Patientslikme, named after the web site we post on. Our little team started January 1st with nothing and now have $6300.00 collected for research, and we are still going. We run a total daily on the site and on Facebook. We all but beg for every cent we get. We have not had corporate matching as some have. We are just a little bunch of Parkinson's patients and their families or spouses who said,Yes, I Can and remembered this little phrase:

No matter what the task may be, How hard the course you face; Believe that you have what it takes To run life's toughest race.

And off we go to meet in New York City, some for their first time, me for my third. Some with more money than others, but all with hearts of gold. All will feel that surge when the Walk begins and they realize they are one of thousands and tears come to their eyes and all will feel so much pride when over the finish line they come. Some will have canes and some will have walkers, some will be in wheel chairs and some can still walk on their own but in their minds and that's every mind, they can fly. They can fly like angels if for just one day because they turned to God at the Parkinson Unity Walk in New York City. Just in case you have not checked the totals, $684,371.00 has been collected so far and we are not done by any means. If you want to experience a life altering experience in your life time, whether you have Parkinson's or not, come to Central Park and help us Celebrate Life as it is........Love Pokie

Can You Feel The Burn?

Poor" Coffee" has been left behind while I rambled and traveled on "Today With Pokie" almost daily. So much is going on and it's very hard for me to even keep my "to do " notes straight. This past weekend some of my family traveled to St.Louis for the Undy 5000 for Colon Cancer. My friend, Stacie Mishler, is the event director for the Colon Cancer Alliance and had invited me in to participate and met some of her friends......one in particular Gary Palumbo, , Palumbo Exhibit Designs, Inc. We went out to eat on Friday night and I give him all stars. What a sweet easy going guy and we talked and talked and talked. Imagine that with me around? There are some people I come in contact with, in this phase of my life, who I seem to have this unmistakable draw to. I have not seen Stacie since last years Unity Walk though we have been in constant contact. We picked up where we left off without a hitch. Gary never set in silence, he jumped right in and I can see what a wonderful work pair they must be for the Cancer Alliance. Thank you guys, Gary for the opportunity to meet you and, yes, I will call you in NYC, Stacie for being able to hug you and sit in the warmth of that fabulous smile and last but not least my daughter and her son my grandson Brendan. Heidi is forever taking care of mom I wish it were the other way around but it seems it has never been......but she had a great time! Brendan you pulled it off....Nine years old and at a five star restaurant with no hamburgers and he's starving. Sitting with three adults, talking about things way over his head for over TWO HOURS and he nailed it....He joined right in the conversation, tried all the food and ate his order and was the perfect gentleman....Can you tell grandma is proud? The next morning we were up early and it was cold and a mighty wind was blowing making it worse but we gathered up my old wheelchair and headed to Forest Park in St. Louis, Missouri and did the walk and really had a good time. We " Felt the Burn" love and thanks Pokie

The Quilt Squares Keep Coming.....

Some time ago I opened the mail box to a lovely surprise from a newly divorce lady who lived in South Dakota, U.S.A. and had met me through Patientslikeme.com in the past months. As she told me, she was newly diagnosed and jsut wanted to send me something in honor of our newly established friendship. I was working on quilt squares for our Parkinson quilt at the time and as she told me she did not qilt but did chrochet and knit and was sending me these two dish rags(???) she had made so I could think of her when I did my dishes.  I wrote her back immediately and told her there was no way I could ever use something so beautiful on my dishes and lovingly put them on my PLM shelf nex to my computer.  Then yesterday I was sitting at my desk and decided I would make a panel in her honor to go to Scotland in the Fall for the Global Conference......all hers in honor of her friendship and what that gesture meant to me.  Though I hate to loose them, I would love for the World to see just what meaningful and deep relationships are formed at Patientslikeme.com. Not a day goes by without interaction and love in some form. It may come in a card or phone call, a gift or a quilt square, but it's there to help us get by. Thank you always..sdrodeaomom...love Pokie

 

This is Elaine's square from Palo Alto, California. Though my photo leaves a lot to be desired. The square had all the heart that could possibly be sewn into a panel.. This is the story she attached:

"The quilt panel I created is meaningful to me because it is knit from wool given to me from some of the best people in my world. I chose the over all fall color scheme based on some incredible wool Laura(my youngest daughter0 brought me as a present.  There is a purple alpaca wool that Jessie(my oldest daughter) sent me from Peru while there on a bike ride. Joan(friend) contributed the striking orange eyelash and fall ribbon from her collection. Susan(friend) gave me the gold and green mohair. I saved wool that was used to knit Carol(my sister) a shawl and it is incorporated throughout the project.Those who know me well understand my cutting skills are not the best.  David( my husband) made sure my panel was the correct size.....This panel was made in honor of  MY SUPPORT TEAM"

I have no idea how, when the time comes, we will turn these squares loose to the world.  Each has a heart and soul and soon feels like a child we have given birth to. Hopefully when the World sees our work and touches these panels they will feel our love and help our plight....love Pokie

Global Congress Quilt Square #2

This is my first square in it's first form. Now ccomes it's personality. A nose for Rudolf and a name for Teddy (HUGS). Ornaments fo rthe trees and names on the packages Glitter and Glow a litttle here and there and we'll remember that we all dream we fly in "Parkinsonland"

Conquering My World

When all things seem to be sliding down hill or "Going South" as someone said recently on the site, I begin to get very depressed which is very much not like me.  An unusual number of my friends are taking a turn for the worse this winter, The Winter From Hell. and yet I have made some amazing friends to spur me on. one wrote last week on his blog,"Weakness is not an attractive word.  but there can be depth in the damaged soul, breadth in the battered body, and toughness in the tested and troubled mind." Isn.t that beautiful?  R. Kuhn wrote this in one of his recent articles in his blog Positive Parkinson's  and today that was just what I needed to hear.

For days the mountains in front of me have been getting higher and higher.  I am taking new seizure meds that are just kicking ***.I have to take it or seize and when I take it I get light headed and head for my ever faithful recliner where yesterday I spent the whole day out like a light.  This would be fine if I lived by myself but I am suppose to be taking care of myself and my mom who is 84.  No way...There was plenty of food stocked up in the refrigerator and the television was on a good channel with lots of news, so I am sure she wandered in and out all day questioning wither I was among the living or dead and still was not sure when she heard me snore. I woke up late yesterday with my cat laying on my chest with his arms around my neck licking my chin. I guess I had scared him to death and he sure did me no good either.  So now I realize I have a Seizure Cat Buggar. Is this possible?  Could be.  I know he never leaves my side.

Number two on my list for weeks has been my printer.  It seems like everything else around here,seems to have decided that in order to survive one must do what you can when you can.  My printer has decided to do nothing when I want it to and yet when I dose off it prints something I don't want. So as of today it is history. I will now take pictures with my camera and download them straight to my laptop. Little did it know who it was dealing with.  I'll just unplug it and let it pout in the corner while I carry on.

I really don't have it so bad but some days I sure tell myself I do. and then like the printer I need time out to get things straightened out.  My weaknesses or not as bad as I think nor or my bones broken.  I have a multitude of friends who keep me smiling at all times I could be worse,"I'm in time out and what inning did you say it was?"    Love ya Pokie

Recipe for a Happy New Year

one husband

one wife

children

one bible for each

one home

generous portion of prayer

one pkg. of work

one pkg. of play together

one portion of patience

one portion of understanding

one portion of forgiveness

one small  paddle

one gallon kisses with blended hugs 

Mix thoroughly and sprinkle with a large amount of awareness.  Bake in moderate oven of everyday life, using as fuel all of the grudges and past unpleasantness.  Cool.  Turn out on a platter of cheerfulness.  Garnish with tears, and laughter in large helpings....Serve God.  

It's Been Too Long

It's Been a month and this is my favorite spot to vent.  Though all readers seem to flow toward http://justmeantiques.blogspot.com , this is where I like to play and experiment. Everyone needs a laugh once in a while and a need for a good memory to flash through our head is always there.  I have run the gambit on emotions today from child like glee to tears.  I presume this is normal for 63 year old at Christmas Time, especially one with my malfunctions. My Christmas has been full and still it grows.  Today is only Christmas Eve.  I have always turned all the lights out except the Christmas tree and put on Christmas music and read the Christmas story and traveled to Bethehem in my mind and then after twelve started my cooking for Christmas Day.  The first part will be the same but I no longer am in charge of dinner and my packages are wrapped.  There are no kids in the house and it is really quiet.  The traditional divinity I make my son has come from Swiss Colony instead as well as finger cakes and bonbons. I am not sad in any way because the stress is completely off and I would say passed on to my children now grown with their own families.  It was time for me to pass the fancy dishes and hidden recipes on to the next generation.  The only one really missing out is my Mother who lives with me and early Alzehimers.  She said this evening, "This just doesn't seem like Christmas" and went quietly to bed very early.  I bet at 84 , and being very confused, Christmas does loose it's punch.  I hope I never think of Jesus's birthday as just another day.....It seems I live all year to share all I can with as many as I can and love it. This year I am going to make it a point to celebrate his birthday as many days as I can, be it March, July or December....The world needs hugs and caring right now...I fear much more than they are telling us....I pay you have a very Merry Christmas or what ever Holiday you call it and you do something to make you smile with a memory of the past....and figure what you want to do in the coming year to spead God's light to all corners of the world for peace....love Pokie

SSDI

While SSDI has brought relief and hope to millions, there are a few challenges to overcome in the system.  In January 2009, almost 3 million individuals who have applied for SSDI are stuck in the system and will wait an average of 2-3 years for assistance.

Overwhelming? Yes.  Still applying for SSDI is one of the best financal steps you can take when a diagnosis like Parkinson appears to have long-term impact.  These benefits are rightly your if you qualify.  From Allusp's website below are a few suggestions to help the SSDI process move more quickly.

1.  Determine your eligibility for SSDI.  A few eligibility guidelines are 1)You've received your diagnoses before full retirement age (65-67); 2) you are not working due to reasons like fibro; and have received a taxed paycheck for five of the last ten years.  For a full list of criteria, visit  http://Allsup.com.
2.  Ask your doctor for a written medical confirmation.  At the beginning you will need this or your process will be slowed down two or three months,
3,  Meet deadlines.  If benefits are denied at any stage of the process, there is only a 60 day window to file an appeal.  You don't want to miss the deadline or else the process starts all over again.


Don't give up during the application process!  Get help early and be persistent.  While 60 percent of first time applicants are denied by the Social Security Administration.  It is also known that two thirds of applicants who appeal eventually receive financial assistance.  No one could have prepared for the day your doctor said, "I's Parkinson's." but there is help available and government fund to give back a little of your stability.  Good Luck.....Love Pokie

Puzzles, Puzzels Everywhere....

When first diagnosed with Parkinson's I found doing jigsaw puzzles helped me get past the pain in my legs. In the first two years I did thirty some odd puzzles. Some were small with tiny pieces and others were large 1000-2000 pieces. The more complicated they were the better I liked them. Jane Wooster Scott has always been my favorite. As the puzzles piled up, I found I could actually do a 1000 piece puzzle in two days....laminate it and have it hanging. You see people with Parkinson's and particularly those on Requip often become obsessive and gamble or whatever, I did and still do puzzles. Is compulsive behavior when you know you are doing it? Every one I know has at least one of my puzzles. I have one whole wall dedicated to my puzzles, from ceiling to wall.Now this week I have started a new project. I finished a puzzle called "Grandmothers Kitchen" which showcased a 30's kitchen and all the antiques that went with it. As I was putting this puzzle together, I decided to redo my kitchen and showcase my antiques......Now we will see how long this project takes. "Parkies" are known for procrastination, obsession and fatigue. I wonder which one will get the best of me.....love pokie

A PASSION THAT IS UNMATCHED.....

I have spent some time lately spinning my wheels. Be it depression or fatigue, who knows, but it is time for me to get over it and go back to what I love most and that is being with people who are associated with Parkinson's or have it. The truly best times in my life have been in the past three years after I decided to write my thoughts down and commit them to the Internet for all to read. I went full force for all that time and loved it but did not address the idea that sooner or later I would run out of steam and crash. Well I did just that in May and can say I have never been so tired in all my life BUT I have slept and regrouped my meds and visited many doctors. All in all it was the rest I needed most and next was the fact I was extremely over medicated. Once the fog cleared and I stopped sleeping way too many hours a day, things begin to shine again. I really believed my life was ending by God's will. If that was the case I was going to go along with it but needless to say he must have more plans for me. Daily offers pour in and help on how to get what I do write out to the general public.....I have always said that "Today With Pokie" was from my heart and "Coffee With Pokie" was for laughs and Journey to 2009 was commercial. I think that still applies but somehow I need to consolidate so a person can go to one place and find me not three or four......We will see what I come up with in the on coming months but needless to say I am doing well and back with a "PASSION" THAT IS UNMATCHED......see you later love Pokie