Taking one day at a time

Well 2 weeks ago today Ken had his first part of DBS surgery. He was a trooper from the first moment we got to the hospital. He was so positive the whole time and I was so excited this day had finally come. After he went to surgery I went out to the waiting room. Now most people would have gone to the main family area but that was not possible since I had the most incredible support group anyone could have wished for. I could not have gotten through this day without each and everyone of my family and good friends. I cannot thank all of you enough for supporting us.
The procedure was uneventful. The Drs were pleased with their work and I couldn't wait to see him. Once I went into ICU and saw him, tears rolled down my cheeks and I was so grateful. He had a restful night and the next morning you would never had known he just had brain surgery. He was alert and talking away.At this point they had disconnected him from all the monitors ready to send him to a regular room. He was tired and fell asleep. Then WHAM he had a massive seizure. This was the most frightening experience of my life. As I said he wasn't on any monitors so no one knew this was happening. I quickly turned him on his side and yelled for help. The staff responded so quickly and took awesome care of him. I felt like I was in an episode of Greys Anatomy just standing back watching. I was so scared. The staff stabilized him and then he just slept and slept. Our families once again dropped everything and were there in a blink. He doesn't have much recollection if any from the rest of that day or the next. He was very very sleepy and confused. We had to just wait it out. It was so hard. When we finally came home he started having focal seizures. I thought I was terrified before but now I was even more scared. I felt this past 2 weeks I have been totally out of my element. I have 20 years of medical experience but nothing prepared me for this. I felt so helpless. The second procedure was last week and was a success. Since we have been home Ken has been sleeping a lot. Dr. said it is his body's way of healing.
I am confident that we are on the road to recovery. Ken is such a great pt. and has been giving 110% since day one. Words cannot express my gratitude for every ones love and support. I tried really hard to answer all the texts, phone calls and emails but I wasn't prepared for the "fanfare" he received. I had over 300 texts and emails. I cannot thank our families and friends for their unconditional love and support. Everyone was such a strong support when we needed it most. I feel so blessed.
Please continue to keep us in your thoughts and prayers as we continue to get Ken to a full recovery. Those of you that have the honor of knowing him will not be surprised by his courage during all of this. He is and always be my hero and I will always be here right by his side.

Ann

Approaching the BIG DAY

Well we are just a few days away form the big day. I am so excited for Ken and the great potential he is about to experience once again. I admire him so much for what he as endured and how strong he is everyday. We recently had the opportunity to visit paradise. I can't even begin to express how breathtaking it was. Once again Ken planned every detail to perfection. I experienced the most romantic moment of my life as we renewed our vows. Imagine being in Maui on a secluded beach at sunset sharing your own vows with your soul mate... I can honestly say it was phenomenal.
I know a lot of people thought renewing our vows after 10 years was crazy but for me it was so necessary. I wanted to reaffirm my unconditional love to Ken and vow to him that I will always be here to support him. There is nowhere I would rather be than right beside him through this surgery and recovery.
We are so lucky to have great family and friends for support. We truly appreciate each and everyone of you. Thank you in advance for keeping us in your thoughts.
I will keep you posted.... Ann

It's a date

I always look forward to dates with my husband but this particular one will be unique. On September 30th Ken and I will be going for DBS surgery. Now I know it may seem unusual for me to refer to this event as "us" having it done, but in my heart this is how I feel. I know Ken is the one with Parkinson's, the one who has gone through all the medication and testing rituals. He is the one having surgery, but I am his partner. Even though I may not be in the procedure with him and I can't possibly understand what he goes through day to day, I am and always will be his soulmate.
I have found these past few weeks to be very emotional. I see the strength that Ken has in dealing with all this preparation and I only hope I can offer the same strength to him. I have dealt with some very difficult situations in the past but none comes close to this. As a couple we will face this how we have any other obstacle, together.


Ann

A partner's view of DBS

Allow me to introduce myself. I am Ann Glowienke the other half of Focus on a Cure. I wanted to start my own blog from my perspective on Ken's upcoming DBS surgery.

I must admit that I knew someday surgery would be the next step but I couldn't have been any less prepared to hear those words the day the Neurologist told us it was time. I remember it like it was yesterday.

We were sitting in her office going through the usual questions, joking about Ken's addictive mirapex induced behavior and then WHAM "you need to see Dr. Verhagen" (the DBS surgeon) I wasn't sure what to try to hide first, my jaw dropping wide open or the tears welling up it my eyes. I knew this was not the time for my emotions to run wild and that I needed to be strong for Ken.

I sat and listened to the rest of what the doctor had to say, asked a few questions and prepared in my head what our conversation would be on the way home. I knew how scared I was and I could only imagine Ken's fear as well.

We were pretty quiet walking out to the car trying to digest what we had just been told. On the way home Ken asked me "so what do you think" I immediately answered "if this is the next step and it will help you, I'm in"

I began researching the procedure, side effects and risks. I wanted to know as much as possible. We have gone to both appointments with the doctors that will be performing the procedure.I felt very positive after having the chance to meet them both and discuss the details. At this point I am as comfortable as I am going to be.

If I said I wasn't terrified I would be lying. I ask a million questions to myself everyday. I often watch Ken and wonder will he be the same? I tell myself everything is going to be fine because we have a mission to find a cure, and we are not there yet. This is probably one of the most frightening experiences of my life. I am so excited for Ken and the chance for him to be tremor free. I see him struggle everyday and nothing hurts my heart more. I know this is not about me but we are a package deal. It is very hard as his partner not being able to help him. It it extremely frustrating knowing there is nothing I can do. I am so proud of Ken,as he continues to fight this horrible disease with integrity.

I am so lucky to have Ken as my partner and best friend. I will always support him and be here for him in ANY capacity he needs me to be. I am looking forward to this surgery and the benefits it will offer him. From the time Ken was diagnosed I never thought twice about what we would do to help find a cure. Starting the Focus on a Cure Foundation for Parkinson's is one of my greatest achievements marrying Ken is the other.

Keep us in your thoughts,
Ann
"True love is like a tattoo, it lasts forever" AG 2008