How do you quantify AMAZING?

So, it's been a week and the results keep getting better and better. It is an amazing miracle. He now once again looks 38 and acts 38, not 68! He is up and out and moving and grooving. I don't mean to be hookie - but man oh man, you should see him now.

We are still working to adjust meds and the DBS, but holy moly, the difference is unbelieveable. The man is a walking miracle. Craig, Tim and I went to dinner last night while Lauren was at cheer practice. I was amazed at the animation of dinner conversation. Usually he sits and listens and shows little emotion. Last night he was as animated as the rest of us. We were laughing and laughing and laughing (I don't think the waiter dropping our 3 dinner plates of food all over the floor as he is about to serve us had anything to do with that :-)). It was beyond pleasant, it was magnificent!

We ran into some friends last night and they also couldn't believe how still he was and how good he looks.

Prayers have been answered and his life has been restored. I will say it forever - it is an amaxing miracle. Dr. Elias at UVa is a true miracle worker and we will forever be indebted to him!!!

I think we are getting the hang of this...

... Over the past few days, we have been experimenting with clicks and meds. Today he is at -11 clicks from where he started and only on a few Requip a day - he is beginning to see the balance between the meds and the DBS.

This afternoon we went out to lunch - his hands didn't tremor, his face was bright, I didn't have to say "huh" at all, and only once or twice did I get nudged from the leg with the dyskensias. All in all, a very successful outing. You can tell when the Requip starts to wear off though - that leg does some mighty strange things...

So, a friend of mine, one we met when we moved down here 18 months ago, stopped by last night to say hi and to check up on us. She sent me an email this morning. I am quoting her straight from the email, "It was wonderful to see Tim SMILE!! I can see why you missed it. I have to tell you that I am amazed at the difference in Tim. I hope that this will continue to improve as you guys learn how to manage the system". So, for those of you who remember the Tim from 7ish years ago... HE'S BACK BABY!!!!

2 Days Later...

... and quite frankly, a bit stressed and anxious over this process. The meds and the DBS are working against each other a bit. He has terrible dyskenisas - don't know the medical definition, but think of it this way - your leg is attached to your body, but you have NO control over it. It has a mind of his own to the point where if he is over medicated and "charged", it is like his leg is a kite string on a windy day. It literally takes off and does its own thing. Obviously, making walking, sitting still, and lying down virtually impossible. It was so bad on the way home from the hospital that we had to turn off the DBS altogether. He is currently -17 clicks from the original programming.

Tim spoke to the doctor yesterday and told him to stop 2 of the 3 medications he has been on. So, the good news is now he is down to 1.5 pills a day - down from I think around 14. We are documenting the reaction of the meds and what "speed" the DBS is set to so when he goes for reprogramming in January, they will have actual data to work with. We have to experiment now.

So, the good news - speech is louder, stronger, and clearer; his beautiful face/smile/expressions are back and he is as gorgeous as ever; the right side of his body is completely "fixed". Absolutely no tremor in that right leg!!!

Working to improve - Left hand/arm tremor; and him just feeling good.

He thinks he may be coming down with a cold now too and he is still healing from surgery, so, I think in a week's time or so, things will regulate more. I do think he is feeling better...

His brothers Chris and Mike showed up in the middle of the night as a surprise to Tim. When Tim woke up this morning and saw them, he was pretty darn happy. They have been out shopping for the past 4 hours. So, I hope this is the first real step in his recovery!

The kids are good. They don't see daddy all fixed yet so they think the surgeries were a waste of time. We told them it could take up to a year to get this all situated and they are not happy about that. This will be a life lesson we teach to them that will stick to their little bones for the rest of their lives - PATIENCE - now, if only Tim and I can walk the talk, we'll be golden!

Happy rest of your weekend. Love to all...

Miracles Really Do Happen!

Unbelievable - that is about THE word to sum up todays events.

They turned on the device and kept ramping up the "electricity" going through his body. The higher it got, the less the tremor was visible. Then, no tremor. Like gone, bye bye, all gone. We were watching through big tears of joy! It was the most amazing thing I have ever seen in my life! He was still.

Then, they kept adjusting the device to ensure he had the best results possible. Then, his face lightened up. That Parkinson's mask was gone. He has expression in his face. He smiled today more times than I can possibly remember. It is so wonderful - I almost forgot what he looked like genuinely happy, not laughing, just a regular happy guy.

He started talking across the room and I heard him. I wasn't straining or asking him to repeat himself. His voice is booming again.

The doctors asked him to go out in the hall and walk for them - his arms swung - not stiff and rigid, but actually swung at his sides.

We had spaghetti and meatballs for dinner and he ate and did not struggle.

I am amazed and in awe of what these doctors did for Tim. He is where he was 7 years ago - BACK TO NORMAL!

We need to play with his meds now - he definitely doesn't need all of them, but it is dangerous to quit cold turkey so we have to give him the least amount to be in his system that will reak the least amount of havoc.

The power of modern medicine combined with the power of prayer worked amazingly well!!!!!!

I need to thank you all again for all of your help during this very difficult time. It's all good from here on out! Love to all.....

Surgeries are done

Yippee!!! Surgeries have been successfully completed. We are back at the hotel. Tonight will be all about sleep and recovery. At 9am tomorrow, its all about turning it on and seeing a difference. I cannot wait. This has been such a long road. The surgeon seems very pleased with the surgeries and is not expecting anything but the best for him when they turn it on.

More tomorrow night...

Surgery #2

Tim has to be at the hospital tomorrow at 10am. The surgery can start as late as 12:30 and should last a couple of hours. So... we probably won't know anything until around 2pm, but we don't know for sure. There is a possibility it starts earlier. Frankly, I don't care what time it starts as long as he comes out of it well!!!

His turn on his still scheduled for Thursday at 9am. We are all very excited about that.

I will post something tomorrow night after Tim is back in the hotel room and resting comfortably. Wish us luck, and please, keep those prayers coming! xoxo Carie

Just When We Thought...

...The surgery was scheduled for tomorrow, this morning it got moved to Wednesday. They are moving him from outpatient surgery to regular guy in hospital OR. Some scheduling mess up. As long as it is a scheduling mess up and not my husband mess up, I am ok with that :-)

All our plans remain the same, we are still going down this afternoon so we can pick up Maureen from her flight in from Albany.

Please, keep praying, but please postpone those extra loud ones by one day. Thanks!

'Twas the Day Before Surgery...

...And all through the house, everyone was sleeping, and I feel like a louse.
Tossing and turning, no sleep to be had, I start counting blessings and asking for more.
(I tried my best with this, it just wasn't coming together, so this is where I end my poetic dream)

We leave this afternoon for UVa. We have to pick Maureen up at the Charlottesville airport later today. It will be great to see her, I don't think I have seen her since July. The surgery is scheduled for tomorrow, and we need to be at the hospital at 11am. He gets the battery module implanted on the left side of his chest and the wires get connected to the electrodes on his brain. Definitely not as invasive as the last one, but this one he will be out for the entire time.

Thursday we will learn how successful this has been as he is scheduled to get "turned on" at 9am. I am hoping when we bring him home Thursday afternoon his daughter gets to see the daddy she never met, and his son the one he forgot was there. It could take up to a year to get the programming right, but I will be grateful for any relief he gets immediately.

Thank you all for your continued prayers, thoughts, and wishes. But, please, keep them coming this week!!!!

I will attempt to post as soon as I can tomorrow after the surgery, but if I can't tomorrow, it will be first thing on Wednesday.

Love to all...

Definitely Doing Better

Tim is really doing better. He just told me he is going to the grocery store - either he is feeling really better or is bored to tears :-) I'll take either as long as he isn't inside depressed!

He is getting ready for next week. He spoke to the nurse yesterday for the surgery on Tuesday. She told him that he will be getting glued back together after the implant - now I know some of you don't like the glue, however, if it doesn't work, they aren't going to let him leave with an open wound on the chest, so they will take care of it!

I am getting anxious for this next surgery and then the procedure to turn him on on Thursday. He was standing holding a bag of chips earlier today and it sounded like an earthquake in the bag. Poor guy is having a bad tremor day. Can't wait til these are a thing of the past, a distant memory, a "remember when" kind of thought...

Next week is fast approaching...

... Surgery #2 is next week already. YEAH! I think we will all be happy when this is over and he is all better. He is healing really well. His distorted face is gone and he is back to being my handsome man :-) Discoloration is gone on his face and working its way out of his head. The scars on the top of his head for the most part are healing well too. There is a small spot that needs more time.

For as weak as Tim was last week, he managed to get out shopping one afternoon and went out to lunch with his parents a couple of times as well. I want him to be all better - as I am sure he does. The more healed he is from this surgery, the easier the next one will be to get through.

He is a strong-willed man and is ready to get on with being done with the surgeries too.

Hope you all had a great Thanksgiving. I will update again as we get closer to next week, the actual surgery is on Tuesday the 9th. Love to all...

Staples are out

Well, the deed is done. The staples have been removed without pain, he says. I was miles away. Didn't want any part of that. Any way, the scars aren't currently as nasty as I would have guessed and hair is starting to grow in around it. As they continue to heal, they will get better. Tim text messaged Critter the photo I took of his head last night in the event anyone wants to get grossed out, go visit him to see the picture.

Today he is all yellow/green around the eyes. Worse bruising I have ever seen on him and he is still swollen tremendously. I know, it's been 8 days... There is a reason they schedule the second surgery 3 weeks apart from the first. It takes time to heal. Any way, a healin he is doin. We are all thankful he is doing so well.

I think he is looking forward to going back to work. My guess is that will be the first of the year, but time will tell. If he feels good, he can go sooner. But, by the time he will feel better, it will be time for #2 surgery and then he will need to heal from that.

Not sure there will be much more to tell over the next few days so let me wish you all now a very Happy Thanksgiving. I am more thankful this year for family and friends than ever before, and count my blessings each day! Love to all.

A Week Later

... so it is one week today that Tim had his surgery. He is coming along. He is swollen in the eyes and nose again today with discoloration. But, his voice is strong and he asked his dad if he could go with him when he gets his haircut - just for the ride. So, we will see how he feels when the time comes.

The kids are anxious for him to be back to normal as you can imagine. Tim shaved today so when they get home from school, I think they will see that as an improvement in his health - whatever it takes :-)

Staples come out tomorrow and I will post after that ordeal. I am pretty sure I am not taking him - yes, I am a chicken. His parents will take him for me.

Have a nice day!

Sunday

It seems that the hockey game that was on last night did some wonders to Tim. His voice got stronger as he sung along with the Canadian National Anthem :-) He didn't sleep great, but he seems to be ok. If he doesn't bend his head over or down, he is ok. Steady as she goes for him the next few days! He is swollen in the eye/nose area, but no bruising.

I am so happy it is almost a week into his recovery. We were all worried there for a while, but he definitely seems to be on the mend. Thank goodness!

He gets his staples out Tuesday, and two weeks from then til the next surgery. Then soon, it will all be over and he will be as good as new. I can't wait til then!

Saturday Morning

Healing continues. Tim's head is throbbing and he is uncomfortable. But, he still goofs when he can. His stomach has settled, I think more than anything he wishes his head would too. It isn't even a week yet. He needs more time. And again, I go back to him always telling me I have no patience. I guess when you are in pain, patience doesn't exist. Any way, if anyone wants to call, today would be a great day since he is so down in the dumps.

Love to all. Please keep those prayers coming.

Friday

Well, the recovery is moving at a snail's pace - just ask Tim, he'll tell you that himself.

He got sick last night. I think it was his body's way of removing the anesthesia and Vicodin, he isn't so sure. However, there was no fever and he was able to sleep all night. He ate a decent breakfast this morning so I think he is OK. His right eye is still swollen and that is where his headache resides. I wish I could cast a magic spell and make him better now :-)

We just spoke to his manager and his HR group and he officially applied for short-term disability. Although his visions of grandeur of going back to work on Monday were taken away from him, I think he is ok with it. There is NO WAY he could go back to work then. He doesn't even get the staples out til Tuesday or Wednesday. He isn't allowed to lift more than 10 lbs for 6 weeks. Any idea how much a 5 gallon pain bucket weighs? Me either, but it isn't less than 10 lbs. His boss is GREAT and is so understanding about everything. He is even going to come over tomorrow to visit for a bit.

Well, that is my story for now and I'm sticking to it.

It's Thursday Afternoon...

and he's feelin pretty yucky. His whole right side is swollen and puffy underneath. He doesn't feel good. Just gave him pain meds and kicked him, oops, I mean gently sent him off to bed where he can rest quietly and more comfortably than the couch. He is so brave and such a trooper.

He received a present from his sister Maureen today - it is a shirt with a picture of a brain, and on top of it says, "I had brain surgery, what is your excuse" along with "I am so Smart" Simpson's jammie pants. Perfect for the next round of surgeries in a couple of weeks. He'll be the sharpest dressed guy there - thanks Mo :-)

I know recovery takes long, and there is peaks and valleys, but it makes me sad when he doesn't feel well. He is always so strong and never complains about anything. When he does complain, you know he is hurting... Time, all we need now is time and lots and lots of painkillers.

Thursday Morning

Tim had a good night sleep. He is all cleaned up and ready for the day. He woke up with a swollen right eye and we have a call into the doctor, hoping its nothing. He is in great spirits and walked Lauren up to the bus stop this morning. Will post more later when we have news from the doctor. Have a great day!

Home Safely!

We got home safe and sound!!! We are so happy to be here... Tim had for lunch what he wanted :-) not what they were giving him. I bought him an apple pie for dessert tonight! Can't wait to make it for him. My mom is still here and will be leaving tomorrow. Tim's parents will be here through Thanksgiving, it will be nice to not have a stressful holiday so soon after the surgery.

Tim is in great spirits and looks pretty darn good. His pain currently is a one which is amazing, or the Vicodin is still in effect, not exactly sure which.

Next, we go back down Monday night December 8th for the surgery on the 9th for the doctors to implant the "battery" module in his chest and to connect the wires into the brain. That is an outpatient procedure, so we will be home the night of the 9th. We then go back on the 11th to have the device turned on and programmed. That will be the most exciting day over the past many years we will be experiencing together. We will ask all of you to have fingers and toes crossed that day...

Again, thank you all for your prayers and thoughts.

I will post again tomorrow with an update.

The Night of the Day After...

I left Tim at about 9pm tonight. He is happy to be going home tomorrow. I know it sounds soon, but there is nothing we can't do for him at home that they are doing for him at the hospital. Besides, he will be relieved when the Texas Chainsaw snorer roommate is out of his range of hearing keeping him up all night. Poor man is really ill, but I have never heard a human snore quite like that before :-)

He was starting to increase with a headache and not feeling well. I got the nurse telling her I think it is time he gets Vicadin again. She said she needed to check his chart and if it was time, they can give it to him. Apparently, they like to give Vicadin every 6 hours. She came back with it in hand. Last time he had taken it was 10am - he went 11 hours with NO pain meds. AMAZING!!!! He is amazing. I love him to the moon and back and then some.

His appetite is just fine. He ate breakfast, lunch, and dinner and had a snack of a cheeseburger and fries and a smoothie. He is good.

We will need to get his staples taken out late next week, they said I can do it - I am pretty sure that is NOT going to happen, so we will make an appointment with our local doctors. Hopefully they can get something right :-) If we have any volunteers that will be in the Winchester area ten days from now, we are willing to consider them. HAHAHA

It is now 10:13 and that proverbial brick wall has just been hit - so I will be calling it a night for now. I will certainly add more tomorrow after we get home with what I am hoping to be an uneventful trip there. Love to all and sweet dreams.

It's the Day After...

Let me apologize for not updating this blog yesterday. It was an insane day...

They took Tim in right at 6. He had his halo put on and then went in for surgery about 8. I got called about 12. The whole thing took 6 hours, just like they predicted. From the time I left him at 8, til the time I got the call at 12, I felt every second tick by one slow moment at a time. That was the worst feeling EVER!!!!!

When they implanted the electrodes, they test it to make sure it isn't a dud. Tim said as soon as they turned it on it stopped the tremors - a blessing in and of itself. Unfortunately, that is just a teaser and we need to wait a while til he heals from this to get the battery pack implanted and the device programmed. So, at least we see what is in store for us over the next few months. Personally, I couldn't be more happy for him. RELIEF - it is coming!!!!

He came out of surgery groggery as you can expect, but joked around the minute he could. The recovery room nurse called me to let me know he was there and asked if I wanted to talk to him. Tim came on and I said "Hi honey, how you feeling?" he sarcastically replied, "Who is this?". YEAH! He was back to himself in no time with a really BIG headache.

So, it is the day after and he is good. He has a headache and some bleeding from the incisions as you can imagine, but it looks like he can go home tomorrow.

I am so happy that I could cry, oh wait, I did that already! Thank you all again for all your prayers, thoughts, good wishes, and comments. I will let you all know when we are safely home tomorrow...

It's the Day Before...

...and I am a mess. Tim's mom and dad, brother Mike and his wife Kathy, and sister Jeannine are all here to keep me calm :-) which honestly is not working so well. I am stressed to the max! I can't wait til tomorrow night, if you know what I mean...

Everything is still on schedule for the 6am surgery, so we will be leaving our house around 4 to make it down to Charlottesville by 6. We will check into the hotel and then go get dinner. Today is the first time I am so sorry I can no longer drink alcohol :-( I sure could use a mudslide right about now. I will get over it!

Tim is doing fine and enjoying his visit with his family. He keeps saying it will be fine and what he is most worried about is going through all of this and it not working. With all the prayers that keep coming in it is all going to be fine and it will work and he will be as good as new!

I don't know what time I will be able to post tomorrow. But, please stay tuned....

How we doin'?

Everyone is asking how we are doing? Well, we are nervous, anxious, excited, and scared.

Tim is still at work (it is almost 7:30pm) so his mind I am sure is not on the surgery. They had a big mess tonight that they are cleaning up.

I am trying to make sure there is enough food in the house to get through the weekend and the linens are clean for all our company. Tim cleaned the house yesterday (he had to work til noon) I think to help and maybe to keep his mind off the surgery too. House looks great because we are trying to stay busy :-)

Love to all! Another post tomorrow, perhaps....

To make it easier for the doctors...

...Tim shaved his head yesterday. Now he won't have to worry about washing it in the hospital :-) We think it will also be less noticeable if all the hair is regrowing at the same time rather than just patches. His baby blues are even more beautiful now with the hair out of his eyes :-) Ok, well...

Last day of work before the big day and everyone is awesome offering up their thoughts and prayers.

I can't wait for Monday night so he can start to recover and this whole thing is OVER.

xoxo

Tim's Pre-Surgery Journey

In 2003, Tim was diagnosed with Parkinson's Disease (PD) at the age of 32. Almost six years later (October 2008), Tim comes to the realization with the help of his neurologist and a specialist that the medication he is on has come to the end of their usefulness. His next option is brain surgery.

On 11/17/08, Tim will undergo DBS - Deep Brain Stimulation where they will implant electrodes directly into his brain and hook it up to a battery to send electrical charges to the brain so that he can be "fixed". We are hoping that his tremors are minimized, he becomes less stiff and rigid and can move more quickly.

I will post to this site every day until he is back home so that you can read updates of his progress.

Before I say goodnight, I need to publicly thank Tim's family, my family, the amazing citizens of Oswego, NY and for other people's kindness for helping us out as we struggle through the mounting medical bills. Now, I can say goodnight.