Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings
Where am I going, and how do I get there, and what is the best I can expect? Three such special questions that I waited until last year to ask myself. About the same time as the 2.0 Health Conference in California last year, I was terribly sick and could not figure out why, nor could the doctors. My PDR's were running in the 50's and everyday was a total struggle. I felt terrible. I felt bad enough I ask my favorite doctor, "Is this the end? Are you sure I have PD and not ALS....this is terrible?" I kept plugging along though my endurance and strength was zero. I never put it on the internet except to take it to the researchers on PLM. I said, "These are my symptoms and lab results, xray readings and anything else I can find can you help me and article that I needed to read started popping up on my Facebook homepage. The word got across and I did not give up. I was setting up my live feed for Q&A on my blogs at the 2.0 Conference and stepped into the kitchen for water and God sent me the reason for my problems. I had a grand mal seizure and laid on the floor for three hours before my mom found me...Ah, I now have Epilepsy AGAIN or still....No seizures that I knew of since 1996 and now..BUT I have a different kind of EP, Absence and Nocturnal are my thing.....This day I was just way too over stressed and on no medication. My brain was firing in all directions and not connecting.
After a week in the hospital and loosing the opportunity of a lifetime at the conference, I heard Jamie Haywood from Patientslikeme.com had also been a speaker at the conference and his speech just resonated in my head everytime I heard it, which was many. That passion that had lit a fire three years before now was fanned into a full blown bomb fire. I have never looked back and don't plan to. For what time I have, I will fight for the patient but more importantly I will encourage the patient to fight for himself. He is truly the only one who knows how he feels, in his bones, in his mind, and in his heart.
Focus, Focus.....I have lost this somewhere in the stack of papers on my desk, and because of that I am having a terrible time packing for my NYC trip. I need such a variety of clothing and just cannot seem to concentrate.....and every time my feet hit the floor my mother comes upstairs and sits down to check what I am doing...I do hate this. She asks me also where I am going...some times 20 times a day.....then who is going with me.....then when will I be back? By then I have forgotten what I was wanting to put in my suit case. I tried tiptoeing but that is not some thing PD patients do very well, especially this PD patient on squeaky floors. Oh well, I have to look forward to this too. She is 84 and has Alzheimer's. I hope when I get to this stage I live by myself so I can enjoy it.....
So to sum up my ramblings, I will do the Unity Walks forever and you should also. The feelings are ones you need to survive today. HOPE, FRIENDSHIP,COMMUNITY, AND THE FEELING YOU CAN.......................YES YOU CAN love ya Pokie