i went to my nuero in lexington on may 23,2012 to meet with the medtronic people so i could get my dbs adjusted so that i could eventually start taking less meds.  well when they finished adjusting i felt fine felt really good so we went to sonic which was very close to the drs office and then things got really bad really fast my right side of my body was totally doing its own thing and i could not control anything my right leg i couldnt lift to take a step it would just drag behind me and i literally had to lean on rik for support my right arm was just going crazy it was all over the place i was having a severe side effect called dsykenesia which in itself is very painful and drains you of your energy. oh yea while they were adjusting the settings on my dbs they would turn it off which let me say is the most awful thing ever that itself drains you cause all the symptoms that were being controlled were now present again ( and i hated that i felt helpless and scared and just hating this visit )so back to what happens rik takes me back to the drs office which they immediately take me back and get both of my drs in the room they start adjusting the settings again which means they turned it off again by this time im exhausted and my body is still going out of control. they finally got me on a setting that worked so we stayed there for 30 minutes to see if i would be ok to come back home.. so we headed home i instantly took a nap which was a much needed thing after what i went through it will take a couple of days to get over the physical pain that i went through but this not only affected me pysically but emotionaly and mentally. so if you are reading this and it comes to your heart to pray for me please do my tremors are back under control i just need energy and strength and i know that GOD will provide this for me thanks everyone

one thing is for certain my memory is not that good.  on friday i heard stories about my dad's side of the family that i thought i was hearing for the first time.  but all my other siblings said that they had heard them all through our childhood. i wonder why i can't remember them, and when i think about my childhood there are only very few memories that i have.  i don't know why this is or what i can do about it.  and when i hear something that i think im hearing for the first time everyone thinks im crazy because they have heard it like a million times.  is something wrong with me did something happen as a child that i mentally blocked my childhood memories is that even possible and is it possible to get them back?  i don't understand how it is that some memories are there and evidentally alot are not.  and when i ask about these stories and ask to hear them over and over ( because i honestly am intrigued) well lets just say that they are getting tired of telling me stories that they think ive already heard.

As i sit here the morning after my 13 yr old goes to the 7th grade prom , i think when did i become old enough to even have a 13 yr old to go to the prom.  Seems like it was only days ago that she was learning to walk and talk and then i wake up and she's 13.  I am so proud of her she has accomplished so much All County Chorus, First chair in All County Band, making it in All District Band to singing friday May 4th in Bobcat idol. She will be singing Adele "Set Fire to the Rain." she has an amazing voice she plays the saxaphone wonderful thanks bopaw for working with her ( i know you don't read this but kudos to ya anyways lol ) she has turned into this talanted beautiful young lady and i just don't know when this all happened.  One thing it has taught me is to cherish every moment you can with them. because you never know what tomorrow will bring just wanted to get this off my chest cause i think im a lil deppressed my lil bri bri is now a young lady a teenager to be exact lol . but she is a good kid and i am so proud of both my girls and love them both dearly

Mark 10:27

And Jesus looking upon them saith,With men it is impossible, but not with GOD: for with GOD all things are possible.

new year

well this is the beginning of a new a new year. for me one of the highlights so far this year has been Bri turning 13 years old. although this has been somewhat of a depressing time as well because she's 13 OMG how is she 13 time flies. another thing that has me sad is that samuel would have been 7 yrs old but i miscarried with him a few days before Brianna's 6th bday. so January is a bittersweet month for me. but i know that if it was meant for samuel to be here with me he would but GOD had something else in store for me. and i just have to trust and believe that it was for the best.

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

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 ......

DBS

people have been asking if i am scared or nervous about this surgery. they must think im crazy because i say no i am at peace and excited. and then they refer to the whole drilling in my brain , i just say i know who is in control of the situation and that whatever GOD has planned for me no matter what it will be a success because it is his will and i accept whatever he is going to give me. HE HAS BLESSED ME BEYOND MY IMAGINATION COULD EVER DREAM OF. WHY DOUBT HIM NOW. I HAVE SO MUCH TO BE THANKFUL FOR.




LOVE IN CHRIST
WENDY

DBS

Deep brain stimulation (DBS) in adults is a one- or two-stage procedure under both local and general anesthesia. Deep brain stimulation in children is usually performed under general anesthesia. In adults, the first stage begins with application of a stereotactic frame using sedation and local anesthesia. A stereotactic MRI scan is then performed to identify the deep brain target (this takes about 30 minutes). Coordinates are determined for the electrode and a safe trajectory down to the target is identified. The patient is taken back to the operating room and placed comfortably on the operating room table. The patient is monitored by the anesthesia service. After the hair and stereotactic frame are prepared, a small scalp shave is performed. The skin is numbed with local anesthetic and a small incision is made. A 14mm hole is made in the skull bone. The dura (covering of the brain) is opened and a tiny area of the brain is exposed. The probe is then passed down toward the deep brain structures.

In thalamic deep brain stimulation, the DBS electrode is placed down into the thalamus and testing is begun. Electrical impulses are sent from the tip of the electrode into the thalamus. One hopes to identify a brain location where the tremor can be stopped effectively. At the same time, the surgical team monitors for any side effects of stimulation (persistent numbness of the face, mouth, hand or leg, heaviness or weakness of the limb, change in speech). If good results are obtained, the electrode is left in place and anchored to a plastic clip that has been attached to the skull opening. The wound is then closed.

In stage two of the operation, the patient is given a general anesthetic and put to sleep. The side of the head, neck and upper chest is prepared and draped. A small incision is made below the collarbone to allow creation of a small pouch underneath the skin that will hold the stimulator pulse generator (battery). A small incision is made behind the ear and a cable passed from the chest incision up to the head (all under the skin). This cable is then attached to the electrode coming out of the brain using a small plastic cover. The entire system remains underneath the skin. Generally, the chest incision is closed with an invisible stitch that does not need to be removed. The scalp stitches (in the front and behind the ear) are closed with nylon.

In subthalamic deep brain stimulation, the procedure is similar. However, once the skull opening has been created safely, a microelectrode (very small metal wire) is inserted into the brain toward the thalamus and subthalamic region. A neurophysiologist participates in the identification of specific brain cells in these regions. The purpose is to map out the area optimize placement of the electrode. Often the room will be dark during this time period. The patient will be kept comfortable during this time as the brain is evaluated. The time for microelectrode recording can take several hours. Once the appropriate area is identified, test stimulation is performed in order to check that the electrode is in a safe location that will not disturb brain function. When the safe area is identified, the electrode will be left in place and clipped to the skull bone-fastening device. If both sides of the brain are to be operated on at the same setting, a second incision will be made on the other side and the procedure repeated. This will again take several hours.

Subthalamic deep brain stimulation is a longer operation. For most patients, the first stage of the operation (placing electrodes into the brain) will all be performed in one day. The patient will be observed overnight in the hospital. The scalp incisions will be closed and the patient will return to the hospital 3-7 days later for the second stage of the procedure. At the second stage, performed under a general anesthetic, the cables and batteries will inserted into the neck and chest area. Once the device is inserted, the patient will return to the neurology clinic. The stimulators will be turned on by the neurologist and his team several weeks later.

For globus pallidus deep brain stimulation, the procedure is similar to that described above with several exceptions. In dystonia patients, the electrodes are placed into the brain using MRI stereotactic guidance, and then checked using stimulation. For most patients, both electrode insertion (under local anesthesia) and cable and pulse generator placement (under general anesthesia) is performed on the same day.

Potential complications in deep brain stimulation

We are only beginning to understand the brain and its functions and pathways. At the same time, our understanding of the causes of complex Parkinson’s disease, tremor and dystonia is somewhat simplistic. It is not surprising therefore that despite many good outcomes that can be achieved with deep brain stimulation surgery, there are side effects that can be identified. Some of these side effects are related to placement of the electrode into the brain, some are side effects related to the hardware and it’s components, and some are due to stimulation of the brain.

•Side effects related to placement of the device. These include complications from local or general anesthesia, application of the stereotactic frame (scalp infection), exposure of the skull and brain surface (bleeding of the scalp or bleeding on the surface of the brain), and stroke (bleeding within the brain itself, 1% risk of significant bleeding within the deep brain from placing the electrode. This can cause stroke or death. If life threatening, the patient would need urgent brain surgery to stop the bleeding and save the patient’s life. This is often the most serious complication of open brain surgery.
•Wound Infection. This can occur from cutting the skin and exposing the brain or other tissues. The risk of infection is 3-5%. Patients are placed on antibiotics at the time of surgery to try to minimize this. If an infection occurs, part or all of the system will have to be removed and then replaced several months later. The patient will remain on a standard course of antibiotics until the infection is completely treated.
•Complications from hardware and its components. Hardward-related problems can also occur. These include fracture or breakage of the deep brain stimulation wire or cable and need for subsequent replacement.
•Battery failure. On average the batteries last 3-5 years, but will require replacement over time. Some patients will turn off their system at night in order to extend the life of the battery. This depends on the problem being treated.
•Erosion of the plastic cable or device through the skin. If the patient is quite thin and the amount of soft tissue under the skin is limited, the system could exert pressure on the skin and erode through. If this is the case, the skin would have to be revised and the system removed.
•Migration of the wire. The plastic cap that anchors the deep brain stimulation wire to the skull can break. This could lead to movement of the wire either deeper into the brain or further out of the brain. We use what we believe is the best anchoring device available for our patients. This complication is very uncommon.
Complications related to deep brain stimulation

Deep brain stimulation can cause both positive and negative effects to the brain. This is due to the fact that many critical brain functions are located within a very small distance of each other. In some patients stimulation could improve walking, but cause side effects related to arm or leg function. Some side effects could include numbness of the face, arm hand or leg, stiffness or weakness of the limb, double vision, closure of the eyelids, change in mood, thinking problems, facial weakness, dizziness, lightheadedness, or imbalance. The stimulator can usually be adjusted to treat these effects. In some patients, stimulation benefits occur together with some side effects.

In patients who undergo surgery on both sides of the brain at the same operation, surgeons have noted that some may develop confusion. In such patients, this confused state has lasted anywhere from a few days to several weeks. It is usually temporary.

If you have deep brain stimulation surgery performed, you have to inform your dentist or surgeon when you need dental work or surgery. You must also inform any physician who may want to order an MRI scan on your brain or body.

Benefits of deep brain stimulation

It is hoped that deep brain stimulation will lead to significant benefit of your movement disorder. This could include reduction of tremor to allow you or your family member to use their hand or leg efficiently, or reduction in head tremor.

For patients that undergo subthalamic deep brain stimulation, it is important to know that the goal of the procedure is to improve the condition in the "off" medication state. Many patients with Parkinson’s disease have both "on" and "off" medication states. The "on" state is when the medications appear to be working and when the patient is more loose and nimble. The "off" state is when the patient is slower and stiffer. Deep brain stimulation does not usually improve the "on" state (the patients best condition), but hopes to improve the patient when they are in their worst state. It also hopes to improve dyskinetic movement abnormalities.

It is important to know that it may take many hours of physician or physician extender programming to optimize the stimulation parameters. Every patient is different. The neurology team will work with you to tune the stimulator to the parameters that may give you the most benefit. At the same time they may adjust your medication. The stimulators can be programmed in many different ways (the voltage, the frequency with which the stimulus is delivered to the brain, the length of each stimulus, and the shape of the stimulus and region that it influences the brain cells) and each patient may be different.

Bittersweet

it is 1 week till the first step of dbs. im excited nervous anxious all rolled into 1. first thing i will have to get use to is my hair, i love my long thick hair, and to think in 1 week it will all be gone is sad for me in a way bittersweet u could say. but on the bright side the thought of no more tremor no more rigidity no more pain. MY MIRACLE!!!!!!!!!!!!!!!!!!!!

What next?

Have you ever just wanted to cry until you couldnt cry anymore. cry till all the pain was gone .