Whats Next

Whats next?

We'll I'm home healing, and taking it easy like they told me too. I'm not suppose to lift anything over  a half a gallon of milk, and I figure that's not over 4 lbs. Our vac weights more than that!

I thought I'd post a couple pics Above, I'm relaxing getting ready to go to OR for Stage III. Note the cool, calm demeanor! Below,is the Medtronic handheld remote. I said don't we have an app for this. They said not yet, I don't believe them. I think there are some exciting things coming in the near future for PD patients. I don't know a thing about this unit yet. I'm waiting for Jan 5th.

I've got some restrictions now, can't skydive,(don't jump out of perfectly good airplanes anyway) can't scuba dive greater than 33 ft, no arc welding, can't  go through medal detectors, I'm prime for the cavity search at the airport now. If I need an MRI, I have to go to Vandy to get it. The last one is the biggest hassle for me.

Medications that I'm on as we speak haven't changed since I started this ordeal, however I think that will change when I get programmed. I think it will probably reduce. That would be great. I started with 2 pills about 13 years ago and now I'm up to 11 per day, and there isn't much assurance they'll be effective. People ask about pain in DBS, Any pain I've had, has been controlled by Tylenol.

I'm hoping that this will continue to shrink. It looks like an extra set of lips below my collar bone.

Jan 5 is a big day for me. I'll get the unit programmed and turned on. Hopefully it will be something like this.

https://www.youtube.com/watch?v=vwc6frRI3rc&t=8s

 I'm thinking about doing it Facebook Live! Tell me what you think, it just came to me to do that. Do I share this big event with my  FB circle of friends live? I hope you know that would be very uncharacteristic of me. The only reason I signed on to FB is to monitor what my daughters were into online. They are grown and gone, so I can do as I please, but I've heard some good things from you all, that has made it worth it. If they turn in on and nothing happens I could cry! Or they can turn it on and I'll cry from happiness. Over the last month or so I've tried to be transparent with my struggle with Parkinson's disease. My hope that someone would benefit from my postings. You've been very kind,calling me courageous,strong to inspirational and a motivator. I think if you were in my shoes you'd probably stepped up sooner to try to make a difference. I hope you've laughed at me, and with me along the way. I'll try to post updates along the way to share how my symptoms change and what this box in my chest is doing to counter the PD.

If you want to see a grown man cry let me know and I'll go over the top and go live if I can.

 

Stage III

It's a done deal! Stage III complete. What started as a nasty,rainy,Monday morning is now clear and Sunny, on the way home from  Vandy. Already seeing and feeling good stuff happening to my body. The honeymoon effect is alive and well, and the surgeon said it's usually indicative of the results when I'm turned on . Don't want to curse myself but I have a glimmer of a sunny forecast now.😎Emotions running high!😥It's been a couple days and my brain is a little fuzzy. I'll talk about the surgery when I'm clear. The doc said this would probably happen

I'll back up to Monday morning. I had a 9:00 AM show, so we went over to Nashville that morning and with traffic still got there a few minutes late. Vandy has a hurry up and wait mentality. I'm sure they've got burned a time or so from out of townee's, so they've built some extra time into their schedule. Ever since the Stage II surgery my meds have resorted back to hit or miss, and on this day, its more miss. I'm freezing in place, holding up elevators, people trying to go to the bathroom,etc.My third surgery at Vandy and my third different location to check in. Get checked in and they call me back, I know the routine by now. Strip,put their gown on, opening to the back, get in bed,wait for the doctors to come by. Dr Konrad did come by. He's a non-assuming kind of guy.You could assume he was a farmer, if you didn't know he was a brain surgeon. Anyway, he thought I looked good. He asked if I was  experiencing in any honeymoon effect? I said "I thought so." The Honeymoon Effect as it relates to Parkinson's is were they have completed the stages of DBS but you're not turned on yet. Just by running the leads down into the brain, it stimulates some areas. The big things I noticed was in the first couple days after surgery, my  meds or not as many were required also, I've been having trouble swallowing lately and this whole week I've done much better. It's exciting, Dr Konrad said the events I'm experiencing is typical to what may happen when I'm turned on. He explained the procedure that he would perform today. Channel the wires under my scalp, down my neck to wire up
to the DBS generator, that he inserted in the left clavicle. Sarge came by as well, I told her that stitching reminded me of First Blood and she said she remembered that movie and liked it.
When the nurse anesthetist comes around, its about time to go. It's a quick trip to the OR and I scooch  over onto the table I hope for the last time. The next thing I remember I'm in recovery. My nurse gives me my token 4 oz. of water and calls for Donna, my wife. Dr Konrad has spoke to Donna and again was pleased with everything. I get dressed, my wheelchair comes and out of there we go. During this DBS procedure Vandy has never been anything but professional, and always nice and understanding. They are efficient, and they have to be with the expense of these procedures. They are almost industrialized. So, don't take it personally. Here we go back towards Knoxville, and stop at Chic Filet again. I haven't had time to get on my meds and I'm freezing each step I take. I'm holding up the mens room, the drive thru, and traffic flow.With some luck, that will be the last time I embarrass myself trying to cross the parking lot.

Stage II

I don't know where to begin, I'm usually not without words. I was thinking as I was having brain surgery, what would be a good adjective to describe this process. Nothing came to mind. I'll try to explain.I'll pickup from arriving at 0530 in the morning (that's 5:30 to you non military types) that's too freaking early for anyone.. You give your car away to the valet and go to the front desk. I had pre admitted, so that saved us a stop. Told to sit,and wait-for your name to be called and we'd' go up to 3rd floor together to prep for surgery. As I wait for my name to be called a couple groups were called out in front of me,and I watched them herd up like cattle and squeeze into the elevator. They all had that uncertain look on their face, it wasn't scared,maybe a look of uncertainty.My name was called and we went to the 3rd floor, and entered the busy hall space for a little and turned into a nurses station, I got Sue on the end. Everyone was in their quick mode, Sue said strip down and put this nice gown on. Got a green one this time! It's going to be a great day! I'm in bed waiting for the parade of doctors and assistants to come by, you know they come by look at your ID,and ask your name and birthday and introduce themselves. The nurse anesthetist David,spent the most time with me ,but where is the main man,the head dude,the brain surgeon? Dr Konrad. They page him,and he says bring him down. I didn't get to visit with Konrad pre-op, a little disappointing, but I know he is busier  than Santa.Time to roll,kiss goodbye and Donna is left holding all my clothes that I wore in this morning. I'm in the bed rolling down the halls, and you feel like everyone is staring at you,feeling pity for you as you speed by. I get to the OR and they say the wrong table is there. The correct one is coming, the one in place will not go high enough. I'm all for everything being exact, but I felt that it put us a little behind the schedule. The new table came quick, and they were impressed that I could scoot my ass 30 inches onto the new table.I didn't have much drugs in me at this time. I was wanting some though! They strapped me to this table in a recliner type position and ask how I felt, I said ok, and they said good enough for 3 hours, I answered we're about to find out! A wiry little woman they call Sarge took control of the room, and said let's get him shaved. She said"Scott, you're getting a new haircut". I answered "I'm sure you all have been to training". They laughed. Sarge and her student I think was responsible for the setup of the platform my head is enclosed in.As they built it there was a bunch of tugging and pressures put on the head. I finally spoke up and told them what I was feeling (as I was told to do) I think they either reversed a few steps or started over completely. By the time they started drilling a dime size hole in my head I was thinking how much this sucks! It was so loud, like a masonry bit trying to go through blocks. I've been called hard headed but come on!

 A group of people have filtered into the room. I think there is no less than 14 people in there. Vandy is a teaching school so I think all positions had a student/teacher thing going on, including Dr Konrad. He had a couple of surgeons from Japan. One of them came to me, and asked which side did I have most of my symptoms, I replied my dominant,left side. He patted my arm and pressed on. I'm sure my timeline of events are off as I drifted in and out of (perceived) sleep mode. I say perceived because I think I was awake for everything except maybe the last of the stitching up. David gave me a little something to calm me down, I was telling them how my legs were trembling, and they said it was being off meds combined with nerves. Everyone had their masks on, so all I can see are the eyes, and hear conversations. My understanding of the procedure is they took data from the scans of last weeks visit and made a plan of action.Where they planned on going, and what was going to be achieved. I'll refer to he main surgeon from Japan as J.J seemed to be the  man in charge of the operation. The implantation I think was computer driven from input from him. He would make call outs as the lead was slowly inserted into my brain. They would be like "8 cm above target, 7 cm above target, 6 cm above target and so on. I don't know at what point the neurologist steps in to having me squeeze a foam ball while he works the opposite hand back and forth to determine release to that side. He would make calls like 25%, 50%,75%100% release. At the same time he's talking to me wanting to know what I feel. I was having feelings of tingling, hot flashes, double vision. I would follow his finger and tell him when double vision stopped. So, you had this 3 way coordination going on! J would say approaching target,neuro working my hand says I've got 75%, and they would stop and annotate that. They might ask how that feels to me, open and close my hand quickly.

During all this I'm perceiving that things aren't going well because of the number of times the nuro would fail to get above 25% release. After the procedure he told me I did well and things went great. I'll go with that.

Now you have to take down what you built and clean up. Sewing up the cuts they made reminded me of the scene from First Blood when Rambo sewed his on arm up. A big thanks to J. During surgery my mouth was so dry, no fluids 12 hrs before you know. I kept licking my lips, he got up and wet a cloth for me, and said I know its not a drink but it might help as he put it against my mouth. I really appreciated that.

Dr Konrad talked to me before he went to see Donna. He reaffirmed that everything went well and I should have good results from the DBS. He then went to Donna and told her the same.

As I sit here 5 days post implantation I feel good. I can sit here and bend over without pressure building in my head. My voice is lower than normal, hopefully that won't last. Thinking positive I think things will be better overall. I just need a battery now!

Pics

I'm moving in slow motion now so bear with me.

Not as bad as it looks

K

Thoughts

Below is a running diologue on a Parkinson's forum about DBS. You can see its all good stuff.

I really like the statement "Yesterday I forgot I had Parkinson's" I told my girls Im not sure what that would feel like! I guess I've been looking for information to confirm my decision to proceed  with DBS. It's a somewhat long, and daunting process, without promises of success. Bleeding in the brain and stroke. They both could end your useful days  of life. The odds are low , but if you fall into that percentage oh well. I was certainly glad to read the positive remarks and I hope to add to them in the coming months.The brain is a powerful tool we have and thinking positive is the only way to go. I've done my research and I'm satisfied with the team of docs and their staff. My family is behind me.  I have people I've never met writing  to say they're praying for me. I don't think the odds could get any better, but you know it's in Gods hands anyway. Right?

I'm ready! Still got mountains to climb!

Certainly surgery is not for everyone, unfortunately, but for those found to be candidates, I say (and remark) I am not a doctor, I say do it, because although it is not a small thing, after doing this, you reborn. guaranteed ...

__________________

That's great! I also had dbs after waiting 6 years. I had the surgery done a month ago. Guess I'm a Cyborg now LOL! What a relief it has been! I'm about 90% better! Yesterday I forgot I had Parkinson's! Still hoping for a cure but this should help me get there.

Thanks for your answer, it seems almost a miracle, after about 11 years of illness, get back to doing the things that I did when I was not even sick. 

Yes, I was a doubting Thomas, also. But this November, it will be one year since I decided to have DBS. We all have the operation with different expectations - mine were to take control over my horribllle dyskinetic body. And today, I am so much improved. No longer do I twist and wryth every joint, but I can sit so quietly without of that type stuff anymore.

I just kept putting it off, thinking, "well, if I've made it this far . . .!"
Why did I takke so long?? Please start asking questions to see DBS is an option for improving your quality of life. It was worth it!

I really don't know how to put this into words. I had the procedure done this Monday, and so far, the results have been difficult to track as far as far as the symptoms that have changed. Currently the shuffling of feet is a shadow of what is was, and the on/off transisition is gone!!!!

All I can add is, please. please, consider having this done. It is absolutely life changing.

Dear friends, after about 4 months after DBS surgery, I feel very well, because I do not take any more medicine. I do not feel constantly tired, and to all of you my dear friends, fellow sufferers, I strongly suggest, does not arrive to the point of almost no return. Who can make dbs surgery, do it quietly. do not worry. the drugs also kill more quickly.

Addendum

I'll call this an addendum to my last couple of posts. Basically it's stuff I wanted to say that I forgot about. (Getting old sucks doesn't it)

Below is a Youtube link to a short presentation about DBS. Dr Yu describes it in a manner, even I could understand. She is a Vandy surgeon, and very sharp.

https://www.youtube.com/watch?v=dyCPdX5i2M0&t=195s

The next link is Dr Koons Asst Professor Vanderbilt Neurology Movements Disorder  Division.

She specializes in Parkinson's. In this video she backs up why exercise is important.

https://www.youtube.com/watch?v=aiV6VH04eH4&t=92s

Dr Koons remarked about RSB having good results, so I want to follow up a little on that. As I said in the post each class is 90 minutes long, and I go twice a week. Since I choose to live in God's country (family farm close to Norris Lake) I have around 35 miles one way to go to class. I don't mine the drive, I knew when I built out in the country what I was getting into. I would go to the 10 AM class and the 1:30 PM class on the same day, but lately it takes me so long to get "on" and get going, it would be hard. Two big big non-motor symptoms is Apathy and Depression. Apathy is alive in my fight and I use this class to battle it,. I feel a certain sense of responsibility to be at the class, especially since I paid good money for it, and Zach has prepared for it, and some of my peers might depend on me to make enough people for a certain drill to go. You might think those are small reasons, but if that makes me grab my gloves and drive 45 minutes to West Knoxville, good enough for me. Thats one more day that the Apathy monster didn't win.  I really hope DBS has a positive effect on the Apathy. You can ask the girls how clean my cars and boat used to be kept. You could see yourself in their reflection. Now I still care, but I don't give a crap. Some days I don't want to get off my back deck. I do have a good view, but I need to be productive. To combat this worthless feeling I'll set goals. For example I'll sign up for a bike ride thats a couple months away. I know I need to put some miles on the road or I'll embarrass myself on the ride day. I can't do that all the time. It's a demon I have to fight almost daily. If Apathy is left unchecked, depression could raise its ugly head. I think I've probably struggled with short periods of depression, say when my meds are not working the way I want them to, or I feel my health is getting worse, or PD is progressing. I'm sure the bike has kept depression somewhat in check over the years,with hiking helping too. I know there is drugs that do wonders for depression, but I'll fight it without them as long as I can.

I just mentioned hiking and a sad feeling embraced me because of the tragic fire storm that struck our beloved Smokey Mountains this past week. Tragic in so many ways, loss of life, destruction of property, loss of jobs,the list goes on. The forest might have a scar on it now, but mother nature will work her wonders, and in no-time it will be back. Houses and cars can be replaced,people cannot.One family stands out to me. The family of 3 brothers with their parents came from Memphis to celebrate a birthday. They were evacuating on foot and become seperated. The bodies of the mother and father were found together the next day I believe,and the 3 sons were taken to the Vanderbilt Burn Center. What was these brothers last image of their parents?Will they always wonder what they could have done different that would have saved their parents. I haven't heard any statements from the survivors , but I doubt they could have changed the outcome with a 1000 degree wall of flame,moving at the speed of a car chasing them down.  I made my girls hike to the Chimney Tops as young as I thought they would enjoy the adventure. I have pics of them enjoying the view and huddled next to a boulder afraid to look, all in the same day. We've done Mt LeConte several times, and have spent the night on top. The first time they did the rigorous trail without me was bitter sweet. I wasn't there to yell at bears if needed, or display any other father traits, but I could be proud that they shared a love for the mountains like their father. I have digressed big time! It's ben a sad week,but the Tennessee Spirit and will to overcome the curveballs in life have never shinned brighter.

Boxing?

While Im sitting around with screws in my head, not allowed to do anything productive I thought I’d share with you one of the activities I do in this battle with PD, Rock Steady Boxing (RSB). We do hit things, but not each other. LOL! Its non  contact boxing training. It started about 10 years ago when a gentleman that had PD joined a boxing club and noticed his symptoms dramatically improve from the intense and high energy workouts. With research and training Rock Steady Boxing was created. It must be doing some good in the Parkinson’s community, its grown throughout the nation, and there’s an affiliate probably in every major city. In Knoxville, Black Dog Fitness teamed with Title Boxing Club to form Rock Steady Boxing Knoxville. The heart and soul of RSB Knoxville is Personal Trainer Zach Guza. Now Zach is not like your average trainer that took some online classes on fitness or maybe spent the weekend in Atlanta at a seminar to get some paper, proclaiming certification to change people’s lives. He is a graduate of the United States Air Force Academy and served as an Air Force Officer and Helicopter Pilot for 9 years. He worked in the corporate world for a while, but his heart wasn’t there. Fitness was such a large part of his life, he knew he could help others, so he made a career change. Rock Steady Boxing came along, and the program is special to him because he lost his father to the disease not that long ago.

Each session is 1.5 hours long. That includes warm up, drills, bag work, core exercises and cool down. He works hard to ensure we work hard, always changing workouts to keep his bag of tricks fresh. I can’t recall a day that my shirt isn’t soaked in sweat after a workout. Come workout with us sometime,we have a good time.

Here is a link to Zach at Black Dog Fitness. If you need a jump start in your life from fitness, give him a call, you’ll be impressed.

http://www.blackdogfitness.com/about-zach.html

http://knoxville.rsbaffiliate.com/

Good bunch of guys and gals!

   Warm Up

Heavy Bag Drills

Cool down stretching

 

Got to have a Rock Steady cheer after each class!