Sinking

I feel like no matter what i do, i am doing it wrong. there is now right way for me anymore. the depression is getting worse all i do is stay at home and sometimes make bows or my polymer clay things. but lets be honest neither of them are very good. i feel like ppl tell me they are good not to hurt my feelings, i would much rather know the truth than to feel like someone is having pity on me. when i need to talk to someone it seems they are never there, i tried calling both my sisters tonight and neither answered. but that's normal they never answer when i call and never return the call. sometimes u just need to hear someones voice and hear that they care ( and trust me you can tell if they care or if they are just humoring you ) i miss the parkie chat room at least there i knew that someone knew what i was dealing with and could relate. I'm drowning in my own tears and i cant seem to come up for air. i can feel the real me slipping away even though i am here and alive. the rudeness and disrespect and ppls stupidity is driving me insane and I'm losing my true self trying to stay afloat i know this sounds stupid and i know I'm the only one who reads i hope i can read back on this and laugh someday

I am in a devastated state of shock and confussion right now. I dont know how i am going to tell my family that there is something wrong. I mean i have been through so much already i dont know how much more i can take and still hold things together. Since 2004 i have been dealt one disaster after another and now just one more thing to add to the list. I have been feeling like crap lately so much fatigue and depressed and memory loss. I am going to have to start writing in a journal daily just to keep up with things. This new diagnoses has just floored me it is very heartbreaking. This is just a very unsetteling time and i need to have some time for myself just to breath

30 Miles in 30 Days

Well i made a personl commitment this week to walk 30 miles in 30 days for parkinsons awarness for the month of april. I was blown away by the people who showed interest in doing this. It has caught on very fast and now has become a worlwide event. Sometimes i am just amazed. I never would have dreamed that this would have happened, so i started challenging others to do the same thing to raise awarness of parkinsons disease. so far it looks like it will be very succesful. folks from all over the world are either going to walk run or swim 1 mile a day for 30 days . now this is what you call a caring family my parkie friends have shown me the most encouragement and support i have ever seen . GOD IS GOOD

As i sit here in the dark reflecting on the days activities i realize i was alone once again in a dark lonely house. I heard a show on the radio sayin that dopamine effects a persons mood. That if you say something nice to someone and they believe it to be sincere it can cause somewhat of a high, but if you say something negative it emotionaly and physically causes them pain. So does this mean since i am losing dopamine that i really dont stand a chance at feeling better anytime soon. I hate feeling this way i have been really depressed lately i put on a smile just so mom rik and the rest of the family doesnt really see what i am going through. I just dont want them to know that i have days that i cant get outta bed or that i am physically in so much pain that it takes everything i have just to do regular household chores but i do it. This is just taking its toll on me the surgery has worked so why am i still feeling this way why am i still in so much pain that i can't sleep and spend all my time while everyone is asleep i am crying it's a different pain than before the surgery now its like i am just a shell of what i use to be. like i lost something a part of me i know that GOD will see me through this storm and that as long as i believe and keep my faith in him that things will be ok. i am grateful for what he has given me im just a little sad and really worried about some things

Life after DBS

I was diagnosed with Parkinsons disease on 9-30-04. Since my diagnoses it seems that i have progressed rather fast. In the early part of this year my nuero sent me to see a movement disorder specialist , who decided i would be a good candidate for Deep Brain Stimulation. So i was sent to meet with the surgeon at the University of Kentucky. He ( Dr Young) also thought i would be a good candidate for DBS. Now keep in mind i am only 36 years old. This is one of the biggest decisions of my life, You have to be emotionaly and mentally prepared for this. So i came home and prayed about whether or not to have the surgery. After a few days i felt peace ,a calmness about having the surgery done. So i prayed more and told GOD that it was in HIS hands. I called the surgeons office and told them to schedule it, not once did i feel like this wasnt the right decision. I knew that whatever happened it was GOD's plan. The only thing i dreaded about the whole thing was my head being shaved.( everyone who knows me my hair was long and black natural curly ) so it didnt bother me to have it shaved i was just going to miss it. So the first surgery was in May, and needless to say i knew what to expect it's just i don't think i really knew lol. When they say you will be awake during this procedure they mean you will be awake through the whole procedure. I was awake and felt everything, the drilling everything. The first surgery was the left lead,the 2nd surgery was the wires and the stimulator, and the 3rd was the right lead and connecting of the wires. I was schocked at how well i dealt with all of this, but i knew that i was not alone. I had GOD on my side , i had the support of my family and friends. Since having the DBS it has been a drastic change, the before and after are just wonderful. I prayed for 2 yrs for 1 day without pain. GOD gave me months without the pain i was in. I am just thankful that i was willing to take my leap of Faith, and trust HIM. i know that without believing and trusting HIM it may have turned out different. I thank GOD everyday for my MIRACLE! Now im not saying that DBS cured me of parkinsons because it didnt, it made living with parkinsons a little easier. God has blessed me above and beyond what i prayed for. GOD is good, and i believe that in HIS time he will answer your prayers as long as you are willing to keep praying and never stop believing and trusting in HIM. My girls have watched me go through this, and one thing i Pray is that they can say my mom never gave up. I know i had alot of prayers with me during this time. and i am so thankful. I know i am getting a little inpatient with the amount of time it is taking for my hair to come back in, and its not so much as me being inpatient as just being tired of people staring or looking at me weird. I would love to have my long thick beautiful black hair but i know its going to take time. and i will be patient because i trust in GOD and i know HE will be there with me no matter what and that is all that matters to me. since having the DBS my meds have been reduced for that i am thankful, i would recommend the surgery to anyone with parkisnosn only if they are mentally and emotionaly ready for it. Pray about it and let GOD do the rest.

A LETTER

A LETTER FOR MY FRIENDS AND FAMILY
(author unknown)

I have Parkinson's disease. It is not contagious or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everyone slowly loses some dopamine cells as the grow older. If the cells suddenly begin to die at a faster rate, Parkinson's disease develops. It is a slowly progressive disease usually occurring as people get older. Medicine can help. I'll take newer, stronger kinds over the years. Some make me sick and take lots of adjustments. Stick with me. I have good days and bad days.

Emotions: Sometimes I cry and appear to be upset and you think you have done something to hurt my feelings. Probably not. It is the Parkinson's Keep talking to me. Ignore the tears. I'll be ok in a few minutes.

Tremors: You are expecting me to shake. Maybe I do, maybe I don't. Medicine today takes care of the tremors. If my hands, feet, or head are shaky, ignore it. I'll sit on my hands or put them in my pockets. Treat me as you always have. What's a little shakiness between friends.

My face: You think you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression, that's the Parkinson's I hear you. I have the same intelligence, it just isn't easy to show facial expressions. If swallowing, I may drool. This bothers me, so I will mop it up.

Stiffness: We are ready to go somewhere and I get up. I can hardly move. Maybe my medicine is wearing off. The stiffness or rigidity is part of Parkinson's Let me take my time, keep talking.

Exercise: I need to walk each day. Two to three miles is good. Walk with me. Company makes walking fun. It may be a slow walk, but I'll get there. Remind me if I slump or stoop. I don't always know I'm doing this. My stretching, bending, exercises must be done everyday. Help me with them if you can.

My voice: As my deeper tones disappear, you'll notice my voice is getting higher and wispy. That's the Parkinson's I know you can talk louder, faster and finish my sentences for me. I don't care for that. Let me talk, get my thoughts together and speak for myself. I'm still there. My mind's okay. Since I'm slower in movement, my thoughts are slower too. I want to be part of the conversation. Let me speak.

Sleeplessness: I may complain that I can't sleep. If I wander around in them middle of the night, that's Parkinson's It has nothing to do with what I ate or how early I went to bed. I may nap during the day. Let me sleep when I can. I can't always control when I'm tired or feel like sleeping. Be patient, my friends. I need you. I'm the same person, I've just slowed down. It's not easy to talk about Parkinson's, but I'll try if you really want to know. I need my friends and family. I want to continue to be part of life. Please remain by my side.

Love my girls

I love my girls so much... well my baby is turning 8 this friday on november 5. they are growing up so fast. i miss them being little but yet am so happy to see how responsible young ladys they are turning out to be. Brianna made the all county chorus this year we are so very proud of her. she has also decided to be in the band she is playing the sax she is pretty good . i love my dad he is such an inspiration to me he will be turning 70 on nov 23 . which scares me. its a long story. but anyways i love all of my family from cousins, aunts, uncles, to my inlaws