Sandy's Parkie Porch! Hello! Glad to have you come and sit with me for a spell. My name is Sandy Norris. I am also known as "sandyofnc" and "sassyplwp". I am 40 years old and I am a person living with Parkinson’s Disease (Pd). My neurologists have labeled it "young-onset" or more precisely Juvenile-parkinson’s. I have had Pd since the age of 20. To the best of my knowledge, I am one of the youngest to have lived with Pd for the amount of time that I have. I "actively-choose" to live my life as positively as I can. It has been an ongoing prayer of mine that God would use me in such a way as to "give back" and to "benefit" the Pd community. Hence, Brenda and Nan have been the deliverers of this answered prayer. Thank you Brenda and Nan! Over the course of twenty years I have gained insight pertaining to the "living" with Parkinson’s Disease. I would like to offer my "open heart" to you in hopes of possibly helping you live with Pd. Our Pd community is growing in number! Our voices need to be heard! If you have something you are dealing with or you just would like to know how I cope with Pd please know I am here to try and help. Write your question or your need in the space provided and I will get back to you. Remember we are all in this fight together. I feel blessed to be a part of PLWP. ---------------------------------------------------------------------------- ---- Come on in and sit a spell! If you have any questions about living with Parkinson's, I may have had an experience or two that might just help you. Write your questions in the box below and I'll see what I can do! Archives: NOV2000 DEC200 You'll find your questions and my answers below the box. 0 After you submit your comments, you will need to reload this page with your browser in order to see your additions to the log. ---------------------------------------------------------------------------- ---- Your questions and Sandy's reponses can be viewed below: Hi Sandy, Here's the answer to one of your prayers. Love and hope, Brenda and Nan ---------------------------------------------------------------------------- ---- Remote User: ---------------------------------------------------------------------------- ---- Remote User: Comments You should move rather smoothly today. We archived you last night Sandy. If you'll look just above the entry screen, you'll find your archives. Have a great day. Bren ---------------------------------------------------------------------------- ---- Remote User: Comments Just checking to see if we're still working. By the way, Sandy's words of wisdom are above the entry screen. Just clik on NOV2000. Thanks and GOOD MORNING! Bren ---------------------------------------------------------------------------- ---- Remote User: Comments Wow Brenda...Gee the page looks so grand. You are a sweetheart. You have been a busy girl. I hope all is going well with you my friend. Thank you from my heart for all that you and Nan do for us here at PLWP! Love, Sandy ---------------------------------------------------------------------------- ---- Remote User: Comments Hi Sandy! Your site looks really great! Hope you are having a "sunny" day! Love - Peg (tnpeg aka pegleg) ---------------------------------------------------------------------------- ---- Remote User: Comments Hello Peg, How wonderful to see you. I can always count on a positive comment from you Peg. Thanks. I am beginning to have a better day. Much love and hope...sandy ---------------------------------------------------------------------------- ---- Remote User: Comments A Bike Ride At first I saw God as my observer, my judge keeping track of what I did. I recognized His picture, but really didn't know Him. But later on when I met Christ, it seemed as though life were rather like a bike ride..but it was tandem bike, and I noticed that Christ was in the back helping me to pedal. I don't know just when it happened that He suggested we change places, but life has not been the same since. Apostolic life, that is. Christ makes life exciting. When I had the control, I knew the way. It was rather boring, but predictable...it was the shortest distance between two points. But when He took the lead, He knew delightful long cuts, up mountains and through rocky places and at breakneck speeds. It was all I could do to hold on! Even though it looked like madness, He said, "pedal." I was worried and anxious and asked: "Where are You taking me?" He laughed and didn't answer and I started to learn to trust. I forgot my boring life and entered the adventure. And when I'd say "I'm scared," He'd lean back and touch my hand. He took me to people with gifts that I needed, gifts of healing, acceptance and joy. They gave me their gifts to take on my journey, our journey, my Lord's and mine, and we were off again. He said, "Give the gifts away, they're extra baggage, too much weight." So I did to the people we met, and I found that in giving I received, and still our burden was light. I did not trust Him at first, in control of my life. I thought He would wreck it. But he knows bike secrets, knows how to make it bend to take sharp corners, jump to clear high rocks, fly to shorten scary passages. I am learning to shut up and pedal in the strangest places and I am beginning to enjoy the view and the cool breeze on my face, with my delightful constant companion, Christ. And when I am sure I just can't do any more, He just smiles and says: "Pedal." -source unknown- ---------------------------------------------------------------------------- ---- Remote User: Comments ---------------------------------------------------------------------------- ---- Remote User: Comments Hey sandy, Heres your mom. she wont talk, just said to say that she saw your sight. love you and come over. ---------------------------------------------------------------------------- ---- Remote User: Comments Thank you mama and Julia....have fun the four of you guys......love yas...sandy ---------------------------------------------------------------------------- ---- Remote User: Comments The new updates to the site are great sandy! Archiving and picture are real nice changes. Thanks to Brenda and Nan, I assume. Keep doing your thing, it it so helpful to so many people. In support! Ryan ---------------------------------------------------------------------------- ---- Remote User: Comments Thank you from my heart Ryan. Your kind and supportive words help build a bridge across the miles that separate us. Much love and hope, Sandy ---------------------------------------------------------------------------- ---- Remote User: Comments Muhammad Ali once said "The man who views the world at fifty the same as he did at twenty has wasted thirty years of his life." Over the years since having Pd, my way of viewing the world has changed. I do not take life for granted anymore. I try to be more patient with others. I try to look at the blessings in my life instead of the faults. My priorities have also changed. No longer does a spotless and clutter-free home come first. No longer do my wants come before other's needs. No longer do I rush into being angry or selfish. The pd brings enough ugliness to my life. After a phone call that I received from my Dad this morning my viewpoint on life has taken on a new twist. Once again God has shown his wonderful grace and mercy through his loving and protective hand. My parents' home was broken into last night. Last night my Dad called and asked if I was okay, almost as if knowing his children were safe would bring a normalcy to the situation. This did not puzzle me for we had some pretty intense storms last night. I went off to bed not thinking another thought. At 8:00 am Dad calls and informs me of the robbery. I am thankful that Mama and Daddy were not home at the time of the break-in. I am thankful I changed my mind last night about going over to my parents' to view a video. I am thankful that I can still wake up in the safety of my home. It will be awhile before my parents will ever feel safe. They have been violated against their will. This has been a very upsetting and stressful day so far. I am about to go over to my parents' home to spend some time with them and try to ease all of our concerns. Have you counted your blessings today? Is it of the utmost importance to have your own way today? Can you lay down in your bed tonight and feel safe? Please reach out today and touch someone's life. Try to make a difference because we are only promised today. Much love and hope ...Sandy ---------------------------------------------------------------------------- ---- Remote User: Comments Balance problems getting worse - utilizing AFO's which help immensley - would like to talk to or hear from someone whose primary parkinsons is a balance problem ---------------------------------------------------------------------------- ---- Remote User: Comments Addressing the balance problem....I had difficulty with balance, bradykinesia (slowness of movement), tremor, and rigidity before medications were prescribed. Since I have been on a good scheduling of medicines balance is not so much of a problem. You may want to post your question on the MGH forum found at.... http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&n umber=207&SUBMIT=Go I hope this helps. I also encourage anyone else that has any experience with balance difficulties to feel free to post here. Much love and hope...sandy ---------------------------------------------------------------------------- ---- Remote User: Comments By mere accident I opened Brenda's Yahoo profile and noticed her association with technology so it occured to me that I might get some ideas from her on web site building. She answered some of my questions and I really appreciated it a lot and she mentioned this PLWP web site. I got touched when I browsed through this page and meditated and prayed that everyone affected by PD is guided and taken cared off by our Lord. ---------------------------------------------------------------------------- ---- Remote User: Comments Sandy- I cannot understand why thieves feel they have the right to take what others have worked so hrd for!! Prayers of comfort for your parents. Peggy ---------------------------------------------------------------------------- ---- Remote User: Comments My husband has had Parkinson's for the past 10 years. He is currently 60 years old. At times it is very difficult for him because he has given up because he feels that he cannot do anything any longer. He currently sleeps about 20 hours each day. He takes Prozac for the depression but I really don't see any results from taking these medication. At times I feel I am at my wits end just trying to keep him up. I know that this disease does cause depression, but before he was diagnosed with Parkinson's. he was a manic depressant. I would just like to know, what I might do to get him interested in life again. Our grandchildren come over, and he finds that they make him nervous, so he goes to his room and sleeps. He very seldoms leaves the house to go any where. I would appreciate any comments that you could give me to pass on to him that would change his thinking and possibly his life. Thanks so much for taking time to help others. Judy ---------------------------------------------------------------------------- ---- Remote User: Comments Dear Judy, I am sorry to hear your husband is having a tough time. Let me first advise you to call your husband's doctor and express your concerns to him. Before you call his doctor you may want to have your concerns listed on paper so as not to forget anything. Sleeping 20 hours a day is too much. I think this is an issue that your husband and his doctor should address. You are doing the right things as far as trying to encourage him. I know you are getting discouraged because of your love for him. By you talking to his doctor it may help you as well. Have you considered support groups? What are some of your husbands interests? Try suggesting them in little amounts at a time. I will be remembering you and your husband...please do not give up...please come back to the porch...have you joined plwp? much love and hope...sandy ---------------------------------------------------------------------------- ---- Remote User: Comments God believes in me; therefore my situation is never hopeless. God walks with me; therefore I am never alone. God is on my side; therefore I can never lose. Copied from "LETTING GOD" ---------------------------------------------------------------------------- ---- Remote User: Comments SKETCHES When troubles seem to weigh you down....and skies are seldom blue....there is no use in grumbling....for growling hampers you....two wrongs will never make a right...so why should you complain....when skies are blue there's little use in filling them with rain....In place of frowning, try to smile, instead of grieving, pray...and you will find the clouds will lift and slowly fade away. For faith can work great miracles...that is, if it is strong...one thing of which I'm very sure, faith never fosters wrong....though this is true, folks often fail to use this force for good. They move along life's stormy sea like stacks of drifting wood. And so I write this bit of verse in effort to ignite the spark of faith in those oppressed that says hold on hold tight. anonymous ---------------------------------------------------------------------------- ---- Remote User: Comments MYSELF I have to live with myself, and so I want to be fit for myself to know. I want to be able, as days go by, Always to look myself straight in the eye. I don't want to stand with the setting sun, And hate myself for things I've done. I want to go out with my head erect, I want to deserve all men's respect. For here in the struggle for fame and self... I want to be able to like myself. I don't want to look at myself and know I'm bluster, a bluff an empty show. I never can hide myself from me; I see what others may never see. I know what others may never know, I can never fool myself, and so, whatever happens, I want to be Self-respecting and conscience-free. Anonymous ---------------------------------------------------------------------------- ---- Remote User: Comments Sandy, I to was diagnosed early at 32, am now 47 ---------------------------------------------------------------------------- ---- Remote User: Comments Sandy, I to was diagnosed early at 32, am now 47 ---------------------------------------------------------------------------- ---- Remote User: Comments Diagnosed at 32? How are you doing in your 15th year? If you reply please leave your name. I would be interested in how you are doing. Thanks so much for stopping by the "porch". May you have a Blessed Christmas. Much love and hope...Sandy ---------------------------------------------------------------------------- ---- Remote User: Comments The Tug-of-War is on. I am finding myself pushing and pulling at my emotions today. Or should I say that the Pd is doing the pushing and the pulling. Tonight and to be honest, most of the day I have been in a battle of wills. The overwhelming pain this evening is trying to get me to succumb to self-pity. The Spirit that lives within me is rising up and reaching out for the strength to triumph in this fight for self-preservation. Pain can be a wicked thing. A dark, black place, that wishes to consume my will, my mind. I am struggling to preserve my mental strength. I am struggling to preserve the healthiness that still resides in my body. I will not relinquish my fortitude. Self-pity can be just as wicked as pain. As the tears, the healing tears flow again this evening, I will make the active choice to think of more positive thoughts. Being involved with other plwps helps. Identifying with your pain and anguish strengthens my compassion for others. This suffering, this pain, acts as a nutrient, a fertilizer, to enable the compassion to well up within me in eagerness to pour forth a kinship that can relate without even speaking words aloud. Courage can be born from adversity. It can only benefit the soul to strive to see the beauty in this ugly war. Beauty in pain? Beauty in crying aloud? Beauty in my body being twisted with dyskinesia? When I am suffering the most, it is then that God brings to me the thought of a beautiful field of flowers, the vision of the way the sun sets on the ocean. When I cry out in pain, it is then that God speaks to my heart saying, "I am here my child; you are not alone." When I feel the dyskinesia is at its ugliest, I am reminded that it is not our outward appearance that touches the heart of God. What is important is what the pain causes to pour forth from my heart. I heard on the national news of a "miracle baby" in Kentucky. A pregnant woman was involved in a violent automobile accident. Her unborn child was literally ripped from her body with the umbilical chord intact. The baby is still alive. Imagine that mother's pain. God allowed her pain to be transformed into the beauty of life. I wish to leave you with the admiration in my heart and compassion in my heart for all of you. I admire each one of you that are still putting one foot in front of the other. I admire each one of you that reach out; because it is in the reaching out that makes us strong. It takes more strength and courage to reach toward something or someone instead of sitting idle in self-pity. When your tears fall may they be caught by the hand of a loving friend and put into a well that a rainbow can be seen over. Much love and hope....Sandy Sandy Norris 40/28/20 check my new site.. www.plwp.org/sandys_parkie_porch.htm "Faith is the daring of the soul to go farther than it can see."