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

my girls are growing up to fast....seems like only yesturday brianna was just born now she is a little lady ..and danielle she will be 8 yrs old soon yikes what will i do ???? Oh btw brianna is starting to get interested in wearing make up ... not alot all she wants to wear is eye liner and nail polish so i guess its ok this is about the age i started wearing make up ....... well i still love em

DBS

Most know that i have now completed deep brain stimulation surgery for parkinsons. Let me just start by sayin i cannot remember feeling this way ever.....it truly is my miracle. My hair is starting to grow back out slowly but surely. I still wear a head scarg THANKS AMY.... I would recommend this surgery to anyone with parkinsons who is debating on this subject. I have learned that most ppl arent even mentaly ready for this. I realized that all i had to do was hand it over to GOD he's in control anyways why not put my faith and trust in him i mean IF HE COULD DIE ON A OLE RUGGED CROSS FOR MY SINS HE COULD PULL ME THROUGH THIS RIGHT!!!!!!!!!!!!!! the past 2 yrs have been very difficuilt for me aand to have this relief is so amazing .

the last stage of dbs

so 1 week from today i will go for the last stage of dbs i am so excited anxious for all this to be finished the light at the end of the tunnel is getting brighter and brighter IM LOVIN WATCHIN THIS MIRACLE UNFOLD BEFORE ME THANK YOU LORD FOR YOU ARE GOOD......

well it has almost been a month since i had my first surgery. i cant believe how much of a change it has made already. without even being programmed yet it has made such a difference in my life. today i played ball with the girls until brianna threw the ball at my head ( by acccident) i ducked and said enough of this lol . i have got all my stiches out from both surgeries i go for the last surgery july 7th where they will be putting the right lead in and hooking it up. then a couple weeks from that stitches out and programmed the light at the end of this dark tunnell is getting so much brighter with each passing dday ....THE LORD HAS BEEN SO GOOOD ......