Friday, February 27, 2009

Saving the Economy?
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I have been kind of distant in the past couple of weeks. I have been battling Parkinson's Disease with all I have and also decided that it was time to outfit my living quarters for my inabilities and MY comfort. Last Thursday I went to town on a mission. Since I was going to Washington D.C. in two weeks to lobby Congress, I decided that it made sense for me to get a Blackberry so all the things I needed were in one place, phone, camera and whatever I just had to figure out how to use it. Now it is Friday, the following week and I am getting my contacts in and have successfully made some calls so I guess I am not too old for this. While I was in there I also bought a couch and chair and ottoman and three tables.....Why? Because the couch I had was twenty years old and everything was mismatched and I figured if I was going through a depression I was going to be comfortable doing it. In hindsight this may have been kind of a "blond thing" I would say I am padding my nest for bad times. I can only tell you that when I sit in my new chair and fall asleep......I am very happy and comfortable and I am so glad I splurged on me and only me....maybe it was about time.

A friend came by yesterday from Wyoming in a huge mobile home and I think I'm in love with their home on the road. Though they only use it for vacations I could be quite comfortable in these surroundings. No taxes, just pay as you go and enjoy...dream on girlfriend......I would never be home then.....just load up mom and go.....pleasant dreams Pokie

Friday, February 13, 2009

Happy Valentine's Day
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I guess I must be getting old and sentimental, I really hope so. There could be worse I think. I could be old and cranky or young and ANYTHING! Today instead of turning to chocolate, I'll turn to my very favorite poem to tell everyone how I feel:


How can one measure friendship...
The firm, warm clasp of a hand,
The comfort found in the welcome sound
Of the words, "I understand"?

How can one measure courage...
The strength we find to fight,
To suffer life's anxieties,
To stand up for the right?

How can one measure beauty, hope,
Or happiness, or love?
What man made measure can encompass
Faith in God above?

So much of life...the best of life....
The things we truly treasure,
Are these, the gifts of boundless depth
Beyond all earthly measure.


Monday, February 9, 2009

It's Still Mom
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Things began to build up last week and finally Friday I just got in the car and drove to my son's about an hour away. He and Ashley and Ayden are my safe haven from the storm. I can go there and be with my grandson for just two minutes and he has me smiling and when he reaches up and touches my face, it's a touch from God. He usually curls up on my chest and puts his thumb in his mouth and goes right to sleep ...his head curled up under my chin and I forget all about Parkinson's Disease. Even though he now has four new teeth and is only seven months old we balanced out his teething pain and my Parkinson's Pain and were quite the comfort to each other through the entire night. He'd lift up his little head to see who was holding him and then smile and snuggle back down for another hour the whole time holding on to my finger......Little did he know I was ever so content and going nowhere. I was so wrapped up in me and him, that I didn't notice the tole the new me was taking on his dad. Matt and I have been through a lifetime already in his early thirty years. Nothing has every come easy for him and all he has ever wanted was a family. Any thing dark has plagued his life from death, loss, fear and illness...and through it all we have always been together no matter what. I always told him when he was so tiny that "God has big plans for you, he just wants to be sure you appreciate it when he brings it to you" His new life though includes watching his mom get steadily worse and be in obvious pain. He had chose to shirt around this in recent months but in this visit there was no hiding it. He has always been different than the girls we could laugh together and play...we like all the same things and hurt in the same ways...we even look alike. And this was hard for him.....I called back tonight and ask Ashley how he was doing and she said." He's holding Ayden on his chest and he's sleeping and he's smiling." In God's own way, he's filling in the empty spaces. Ten years of sorrow and pain has brought him to the beautiful place he is now and it will be much easier for them to watch me together than separate......The changing of the guard is in place and all is well.....This may just be a stumble and not the complete fall. meds are due to be changed and everyone is working real hard in my behalf.....and we all dwell in faith....l am so blessed to have my life just as it is and more..thank you Lord....pokie

Friday, February 6, 2009

Physical Therapy
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I started something last week I have never had since being diagnosed with Parkinson's and I am wondering how come one of my doctors did not recommend me for this in the past three years. At present I seem to have pulled a groin muscle getting in and out of the car. The pull is very painful in it's own but I can realize how bad it is when the therapist begins ultra sound on that very sensitive muscle running from my inner knee to my hip. I can feel how tight the muscle is and as we talked today I realized I am just beginning. All my muscles are pulling and cramping. This is what Parkinson's patients do but I had somehow forgot that those muscles never stop contracting. I now sleep with a roll under my knees and a pad under my lower arms.....sleep with no pillow flat on my back holding on to the pads under my arms like arm rests. I am fast learning that the recliner is not letting my legs curl and hence the legs cramp when I get out of the chair.....Knowing all this, would not muscle relaxers be in order and would not therapy be the order of the day for all Parkinson's patients...just as the LSVT program is a must for us even if we are not having problems yet....we will. I looked at walkers today and will try to get one this weekend. I am realizing how important the whole story is. Stretch, stretch, stretch....heat lotion always and constant monitoring of your symptoms. I have never know a disease that takes so much mental capacity to get through. And how odd is that when mental capacity is just what we loose. Also if you can get it, take occupational therapy before you are desperate. Don't wait on these things to the last minute.....Always have you resources full and in order for the next day. One big item balls. Balls of all sizes....Large to try and sit on, smaller to hold between your knees and squeeze for strength and a small one to keep your hand strength up Well I guess I have sparked a little fire here. and hope and pray that you follow through. This is not a sit down disease and it's hard to keep going when everything within you screams, "STOP" Don't you dare. You keep on going ...fight it every pokie

Tuesday, February 3, 2009

Sleep, sleep, sleep.....
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First I never slept. I might pick up a couple of hours here and a couple more somewhere else but now it's all day sleeping with a few hours up and that in tiny spurts. My meds are obviously off as is my walking and generally all functions...When I first wake up from sleeping I feel great until I try to walk. There is the fact, No sustained walking for this girl. Left hip will old no weight and right arm is extremely swollen at the shoulder, and yes I am still snowed in. Hopefully the temp will get about freezing and the ice will disappear from my hill side and let me get to town and my doctor and PT person. So many things play into this disease and make it worse or better. Right now they will have to wait because, Yes I am going back to pokie

Sunday, February 1, 2009

Facing theTruth
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Humbled I am this morning to say, my walking is so much worse. I can only go in short spurts and WalMart is done by chair. I knew the time would come but really did not want to believe how fast it got here. This time last year I was nursing a broken leg and my son had just got married but I was getting around with little pain just mainly clumsy. Did I really believe that walking with a cane would be as far as I would progress? Or did I think it would take me another ten years to get to that wheelchair? I really did not let myself think about it. How silly I was not to be prepared for this in any way mentally. The odd part is, every once in a while I can walk just fine for several steps and then it's gone. It's so erratic that I now monitor each step on a scale of 1 -10. Good steps, bad steps, with pain , without pain.....Somewhere in all this I must find direction, AGAIN.

I see my Lord, patiently sitting waiting for me to catch up....The Human Will is strong whether headed in the right direction or not. There is no reason I can not fight this battle from a wheelchair it just means I must ask for help more often and often help is not here. I know I am in the wrong surroundings but have to stay here to take care of my mom......who gets around better than me. I really must say it is not a pretty picture.

I can now understand where the depression comes from. There is this child inside of me who still runs and plays in the neighborhood yet my much older body will have none of this child play. Once again the responsibilities of the world are there. One thing I know and will always remember....
.The Lord is my Shepard, I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my sole: he leadeth me in the path of righteousness for his name's sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before my enemies: thou anoiset my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life and I will dwell in the house of the Lord...Psalm 24:1-6

All of these things can be done in a chair....and if it's a power chair I won't need someone to push me.....See how the pieces fall into place. I will take you here and when you learn how to survive in your surroundings I will move you on.....I just received a promotion of sorts. I have been promoted to the next level UP. I need to adapt and get on with it . I'm slowing up the program. In this day and time I should consider myself lucky I was not fired. And Lucky I WILL consider myself and say thanks......pokie

Today With PokieToo and Parkinson's and Acute RA Disease