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 .

another year older

another year older , i am so thankful for my family friends and those people who say what you need to hear even if it is not what you want to hear. rik cooked out on the grill for my birthday , and the pic of me was taken for my cousin jenn who is pregnant and wanted a bday pic of me . dont ask me why she wanted it but oh well thats the best i could do. i have decided to have the dbs done now to figure out where to have it done is the next step. one thing i am afraid of is i have heard of a couple of situations where after having dbs the person has good results from the surgery for parkinsons but they become manic. now this scares me so i will be talking to the drs about this and weigh the odds before going thru with the surgery.

wen

APRIL16,2010

On 4/16/10 i went to see DR. Slevin in Lexington Ky. I was refered to him by my nuerologist, Dr. BLake. After this visit i have alot of decisions to make, Dr Slevin wants me to have the surgery within 6 monts. If i do the surgery they can decrease the meds i take, and with a successful surgery it would mean that it would make my chances of getting dyskensia pushed into the future alot longer. whereas if i dont have the surgery and they continue to increase my meds i end up with dyskensia in my 40's possibley. which i turn 36 tomorrow what a wonderful day huh. i am awake during the surgery while they drill what they call burr holes in the top of my head 2 of them 1 on the left side of my brain and 1 on the left. then i have wires going under my skin to a box in my chest. now for this surgery to happen they have to shave my head ( which im not so thrilled about) and im awake to me this is scary . but it would mean no more tremors. something i have prayed for , for a very long time... but how long will the surgery last no one knows depends on each person, it could last a very long time with low dose of meds. or it could work for so long and have to slowly increase meds i just don't know what to do at this point.

thoughts

Just a few thoughts this week. I found a renter for my birdhouse that my neighbor built for me last year for my birthday don't know what kind of bird it is but here's a picture of it anyways. i love my new porch i know i should post pics but havent taken any yet lol. sitting on the porch early in the morning around 10 not to early the sun shining on my feet getting a flip flop tan lol knitting on my dishclothes i have been making that i have no clue what i am going to do with them lol. but it gives me something to do and relaxes me sometimes so i figure what the heck why not lol.



i love this time of year everything is inn bloom



ah to be a kid again this is bri brooke and danielle . brooke is now 18 she was the flower girl in my wedding yikes how time flies lol they were waiting on the ice cream truck that btw never showed up they were so disappointed

but they are my girls and i love em

our new family photo


love it

awareness to the ones unwilling to learn

is tired of hearing people talk about me to young to have parkinson's ...ya know i would rather not have this disease but guess what i do so either get use to it and move on like i did or just stay away from me because i dont need the stress nor the aggravation of your negative attitude.. this disease cares not for age, race, nationality, or anything else . the questions you should be asking is will i be the next one to hear the words ... You have parkinsons disease hmmm somethinng to think about no one is safe from pd , cancer , heart disease,etc so dont judge someone till you have taken a few steps in their shoes!!!!!!!!!!!


people dont understand we do not choose this. it just happened to be that it happened to me and not you. tread lightly in these waters because you never know if or when you could be the next to deal with what i deal with on a regular basis...is it fair i think not . but without parkinsons i would not be the person i am today. i rely on GOD for strength instead of myself. i rely on the help of others to help me do the things that i can no longer do. instead of judging how about praying for those who have pd, cancer, heart disease etc...... some of us not only have pd but heart disease and have battled cancer. does that make me any less of a person than you i think not it just means i have had to struggle more pray more rely on others more call upon GOD more

DON'T JUDGE ME ....ONLY 1 WILL EVER JUDGE ME AND THAT IS GOD ALMIGHTY HIS OPINION IS THE ONLY ONE THAT MATTERS...

random

today has been a very difficuilt day for me. i fixed dinner tonight but think chance got more of his share, lol . i pray for a day soon where the pd is not so bad that i can get some major cleaning on the house done. simple things that some take for granted such as unloading the dishwasher and reloading just takes everything out of me. but i will get the house ready by friday if it kills me. we are having a weekend with the girls for brianna's birthday. she will be turning 11 and this is killing me she is growing up so fast and in some ways is the girliest girl but in others is the biggest tomboy there is how can this be lol. one day she gets all dolled up for school the next she wears osu sweats. this girl confuses me. danielle on the other hand is just plain girlie. the little southern belle u could say. i believe someday she may be misss america. she loves getting dressed up and pictures taken of her. lol which since getting a new tripod for christmas (thanks gene and lynette) i am most eagerly excited to take her pics. thursday marks the 5th year since i lost samuel as this day grows closer it gets harder please pray for me. i know for some reason that God decided he would be better of with him in heaven, but it doesn't make me miss him any less i keep thinking what he would look like now he would be 4yrs old would he be a mommys boy? well enough for now i am going to bed maybe sleep will come tonight

REFLECTIONS

For the past hour i have been sitting here thinking about the past 5 1/2 yrs. I have cried, laughed, and cried some more. The past 5 yrs have been difficuilt for me for various reasons. It all started with being dxd with parkinson's disease, loosing my baby boy(miscarriage) heart disease, cervical cancer, conversion disorder, ptsd. I have been thru the ringer and back, im not writing this for sympathy, i am writing this because i feel that maybe in someway who ever reads this will not give up hope. And know that GOD is there for you if you ask. I dont know why all these things happened to me but i can say this with each thing it has brought someone new into my life for which i am very grateful and thank GOD for each day. Anyone who knew me in school would tell you i was never one to make a public speach, i basicly showed up tried to be unnoticed and get thru those 4 yrs. Now i can say that i have done more public speaking in 5 yrs than i did my whole life. With each thing that has happened to me it has made me a stronger person yes even on my bad days stronger meaning my faith gets stronger everyday, i believe GOD has a plan and though i can't see or understand it yet, someday i will. Because he lives in my heart and gives me hope of eternal life with no pain. I know that when i go out places people look at me funny, they may laugh. but i hold my head high and i am not ashamed, because I HAVE PARKINSONS.....PARKINSONS DOES NOT HAVE ME!!!!


IF YOU ARE READING THIS KNOW THAT I LOVE YOU AND PRAY FOR YOU EVERYDAY,
I LOVE YOU BECAUSE GOD GAVE ME THAT LOVE FOR EVERYONE
I PRAY FOR YOU BECAUSE I PRAY FOR EVERYONE

AND FOR THOSE WHO HAVE TOUCHED MY LIFE (YOU KNOW WHO YOU ARE) WORDS CANNOT

DESCRIBE WHAT YOU MEAN TO ME AND I PRAY THAT YOU KNOW THIS.

LESSONS LEARNED

I have made decision's in my past, that if i could do over i would choose differently. But you learn from your mistakes and move on, advise your kids on the mistakes you've made and pray they make better decisions than i did. I have also learned not to let people walk all over me because they feel that they are better than me in some way...NEWS FLASH WE ARE ALL THE SAME IN GOD'S EYE'S IF YOU ARE A CHILD OF GOD there is no difference. Do i make mistakes today of course, i have to Pray for forgiveness daily. Just because you are a child of God does not make you perfect. Also just because you are a child of God means the devil is after you...not the sinner he (the devil ) already has the sinner he wants to attack the children of God. Anyways i have learned not to make resolutions for the new year....i never end up doing them. All i can strive for is to be a better person today than i was yesturday. I have been hurt by people so bad that words cannot describe, they have burned their bridges, do i forgive them YES . Do i have to associate myself with them NO!!!! When i was saved i was given a love for everyone, and the desire to pray for everyone, and the heart to forgive . Some don't understand this. I can't explain it other than Jesus came into my heart!!!! The most important thing to me is GOD, second is my family, friends, and so on. I always want to be remembered as someone who always showed how much they cared and loved everyone around them