Merritts Christmas 2010
I had been suffering from small seizures since the summer of 2008. In March 2009 I found out my DBS battery was critically low. It was originally successfully implanted by Dr. Paul Francel. I hadn't been feeling well for several weeks. Dr. Klos kept turning up my DBS device thinking it would control it. They continued, but were very mild. However, they became severe, and were thought at that time to possibly be caused by the dead battery. My neurotransmitter was replaced by Dr. Kim Pratt, a neurosurgeon in Ada in April. He restored my ability to walk well again, but the new device didn't stop my seizures. So some more investigating was needed.
I had some seizure testing in Dallas after Christmas 2009. It was a very difficult experience (10 seizures in 2 days), but it determined what Dr. Klos needed to know, that my seizures are not epileptic in nature, but dystonic. Also, it allowed Dr. Klos to obtain a video of my seizures. One of my brothers, who also has Dystonia, has seizures now. I hope these new findings will also help him. My mother also has Dystonia.
My seizures have caused a huge hardship on me and my family. We had to move from Bethany to Kingfisher to be near my parents who could help us some. We were allowed by our church to live in the church trailer until we could find a house to live in.
The Lord helped our family have the strength we needed to get through all that. It was especially hard on my wonderful husband Daniel, my caregiver, and our beautiful daughter Abby. I recently told her that she didn't need to stay in the room with me when I had seizures and that she could say the 23rd Psalm and hold her dolly tight if she wanted to. It is all very upsetting for a little girl worrying about her mommy.
Unfortunately, our business Merrico failed due to the recession. However, Daniel received two jobs--one he didn't even apply for. Both jobs allowed him to leave and go home when I had seizure. That was remarkable in itself. Update on the job situation: one job has folded, but he was able to increase his hours with his other job some.
Our former house that was on the market for months was taken off the market, yet sold 2 months after the sign was taken down. Amazing things keep happening in our lives.
I am still having daily seizures and cannot be around lots of people or noise. I have had hundreds of them, 1 to 3 a day. So, I am pretty much housebound. The Lord has given me the strength and grace to still be alive though. This has been the most difficult year of our lives, but in some ways the most rewarding.
We can feel the presence of the Lord in our lives more than ever before. The Lord has shown us over and over again that he has been with us each step of the way directing our paths. He has lifted us up when we were down. When we were too weak and broken to walk, he has carried us. He has provided for our needs. With him we are victorious!
U P D A T E S
June 28, 2010- Several days ago Dr. Klos called and said he didn't feel comfortable lowering the setting on my DBS device any more to try to stop my seizures. He and I definitely don't want to stop my ability to walk. Sadly, we are at the end of the road on the possibility that the DBS might stop my seizures. So, I am going to go to a seizure center in Oklahoma City in August to see if they have anything that might help me. Prayers are needed and welcome for me and my brother who also has seizures from Dystonia.
August 2, 2010 - Went to doctor at OU Medical Center about my seizures. That was a total waste of time and to be quite honest, an insult because of her attitude. I could not discuss a thing with her. She referred me to another doctor, but doubt he will help if it is more of the same. It was so disappointing.
August 16, 2010 - Went to a PA/doctor in Kingfisher. At last someone listened and is ready to do some real detective work on finding out what is triggering my seizures. I got some blood work, will track my blood sugar, and will be wearing a heart monitor for several days for starters.
October 5, 2010 - Went to see Dr. Klos in Tulsa. He increased the frequency on my DBS and we had an excellent discussion on several topics related to my Dystonia.
March 16, 2011 - Went to see Dr. Klos in Oklahoma City. He increased the pulse width for the first time on my DBS. I hope that will help. I will see Dr. Klos again in July.
Merritts on Vacation in Maine 2011
July 29, 2011 - We have moved to Maine and are working to get settled in our own place. This follows a recent vacation here. My health is much improved already. Things are going great so far and we love it. I will be missing my family a lot and hope they will come to visit often.
May 2012 - In March, I found a new neurologist here in Maine, Dr. Ed Drasby in Scarborough. He made some much needed adjustments to my DBS device that have really helped to reduce my seizures. My husband and I are very impressed with the doctor and plan to continue to see him as needed.
June 2012 - Abby has successfully finished the second grade. She is a wonderful student. We will continue some school work this summer so she will keep current and learn some new things.
October 12, 2012 - I received a new battery for my deep brain stimulation device just in time before it ran out. What a huge relief! The procedure required surgery as the device is implanted under my skin. My daughter Abby was so brave throughout the whole ordeal. I had a bad dystonic storm similar to a seizure while I was waiting for the procedure. Those are always upsetting for all involved. The neurosurgeon and Medtronic representative did a great job. The nurses had a real learning experience on their hands and will be much more informed if they have another Dystonia patient. Thankfully, we made it safely the 4 hour trip over and then back. I was over there the week before for the procedure, but it had to be cancelled because of an emergency surgery that came up. It is just good to have it done.
October 13, 2012 - Today is the 6 year anniversary of my being able to walk again, thanks to Dr. Paul Francel my neurosurgeon and our Heavenly Father. What an incredible blessing after being in a wheel chair for 10 years!
July 15, 2013 - We are all doing well in Cherryfield, Maine. We are looking forward to seeing some of my relatives soon from Oklahoma who are coming for a visit.
October 13, 2013 - Today is the 7 year anniversary of my being able to walk. Thanks so much to Dr. Paul Francel for my very successful surgery, Dr. Klos, my hubby, family and friends, and our Lord for making this miracle happen! What a great blessing every day!
September 18, 2014 - Last visit with my great Neurologist Dr. Edward J. Drasby in Scarborough, Maine. He has retired. We will really miss him. It was a sad day for us. Thanks so much Dr. Drasby for taking such good care of me.
September 22, 2014 - First visit with my new Neurologist Dr. Markos Poulopoulos in Bangor, Maine. He is extremely well trained and experienced in treating dystonia, Parkinson's, and other neurological problems. He has worked a lot with Deep Brain Stimulation Devices like mine. We are really impressed with him so far. We are blessed!
Information on Dr. Markos Poulopoulous click below:
To learn more about him in a short biography, click here and scroll down to his name.
Click here for address and contact information
October 2014 - Remembering back to October 13, 2006, when I walked on my own for the first time in ten years! I have now been walking via DBS for EIGHT! ( I don't always walk, but it is an amazing treatment!) I had my DBS done by Dr. Paul Francel on June 24, 2006. It was turned on two weeks later. The emotions of that October day, the joy, and the amazing miracle of no physical therapy prior to my walking, all still astound me! Just the circumstances of finally getting a diagnosis after 13 long years in 2005 was amazing. I certainly never expected to walk on my own again. It was a long recovery, but God was always there. Big thanks to my mommy, Patricia Willey Farnsworth and my hubby, Daniel P. Merritt as they were my caregivers through the three month recovery. When I was finally up to going out, we went to IHOP with my parents. Without the DBS, I would probably be totally bedridden today. So thankful for the Lord's working through Dr. Paul Francel (see his biography here)! Thanks also to Nancy Ann Allen for putting God's story of my life on the web. It has been a great witnessing tool for telling what God has done for me!
Abby (L), Rachael (M), and Daniel Merritt (R) November 2014
November 24, 2014 - Daniel and I celebrated 13 years of a very happy marriage today on a visit to Oklahoma. We are so blessed by our heavenly father!
November 25, 2014 - Daniel, Abby, and I along with Nancy and Arnold Allen had a great celebration. After been very close friends for almost 8 years via the internet, we finally had the tremendous blessing of meeting in person at the Olive Garden in Norman, Oklahoma. It was wonderful and very memorable. Thank God for that wonderful blessing!
November 21-30, 2014 - Trip to Kingfisher, Oklahoma for Thanksgiving Week--about 3 days of travel each way and 4,453 miles round trip. We had a wonderful time visiting with family and friends. We finally got to meet Nancy and Arnold Allen at long last after being close friends for so long.
To answer the question some may have on how Rachael and Nancy met, we both got involved in replying to the "Comments" on a story in March of 2007 about Dr. Francel in the Daily Oklahoman - on line version. We started e-mailing each other after that and have been close friends since then. Our friendship has been a great blessing to us both and our families.
September 10-11, 2015 - Trip to Portland to have the battery replaced in my Deep Brain Stimulation device by Dr. Anand Rughani, neurosurgeon. I am so impressed with how quickly they set this up since I just realized the problem and then called them on Monday. I was so afraid my DBS device battery would go a little lower and I would totally crash. The battery was at 2.64 and it if reached 2.60 I could have had terrible dystonic seizures and other health problems. I am so thankful to all who helped me get this done in record time by Dr. Rughani,. Also, they saved me an extra trip to Portland by allowing me to have my preop visit at the OR with the surgeon before my procedure rather than having it on another day. That alone saved us 8 hours of driving. Here is a special thanks to Dr. Polopolous' assistant who got this all set up. Dr. Markos Polopolous is my neurologist. We even really lucked out with our motel. When we went to get a room there was one room left--a fancy suite of 2 rooms with a total of 4 beds. It was a little more expensive than a regular room but worth every penny. Abby even had her own room. And here is a big thanks to the Lord for helping all this things come together so well, so fast!
March 18-28, 2016 - Trip to Oklahoma by our family to visit my parents, relatives, and friends and also to attend the 30 year celebration of Victory Baptist Church in Kingfisher, OK. Also, there was a great revival at Victory Baptist that week. Missionary Dennis Thomas, who worked for 35 years in Central America was the featured speaker for the event (March 22nd to 25th, 2016). It was a tremendous revival and enjoyed by all attending and watching it over the internet. On March 22 we traveled to Norman to meet up with good friends Nancy and Arnold Allen of Ada. We had a great time and excellent lunch at Olive Garden. It was wonderful to see my family and friends. On the way to Oklahoma we got to visit with my sister Melissa, Steve and their 3 beautiful children. The whole trip was a great blessing!
April 29, 2016 - Trip to Bangor to see my neurologist Dr. Markos Polopolous. He recommended a few things to help and he was going to run some lab tests to try to find out why my fatigue is worse. I'm having major digestive issues and have lost ten pounds. That's one possibility for the really bad fatigue. There is nothing I can do at this point but continue to experiment with different foods.
The big surprise there though was, he expects me to need a new battery for my Deep Brain Stimulation unit by September of this year. I just got one a year ago. He has already talked to the Medtronics representative and I will get a rechargeable unit this time because it will be my fifth battery replacement. The doctor said it lasts for 9 years! That is the good news. The bad news is the surgeries are hard on me and my family, but absolutely necessary. Prayers are appreciated for me, Daniel, and Abby. Thanks to God for supplying such a great doctor for my Dystonia...not easy to find. Also, thanks for all of you who encourage me and pray for me and my family.
September 15, 2017 - I had very good visit with my neurologist, Dr. Markos Poulopoulous today in Bangor, Maine. I am getting a new wheel chair for when I need it. My old one is 20 years old and rusting out. My doctor said all my wires to my brain from my DBS (Deep Brain Stimulation) device are working well.
After having a dystonic seizure last night, my mind took a trip...back to when we lived in Oklahoma. While there, having 3 seizures a day was common, going outside was incredibly rare, bedsores made me miserable. I was home bound and mostly bedridden.
I could see the hand of God in that...and I can see it now. Last night and this morning, my heart has been so full of thankfulness to God for the great doc I have now...Dr. Markos Polopolous. Finding a doc that knows what generalized dystonia is and how it affects me is incredibly rare. This doc not only knows that, but he knows how to program my DBS to get the most out of it. A few months ago, my seizures became incredibly violent. He fit me into his schedule in 4 days, although he is scheduling a year out. He didn't want me to harm myself. His changes were remarkable, and I haven't had as violent seizures since. He follows research and knows just about all there is to know about my disorder.
This didn't happen by accident. Tears of thankfulness come as I think of all that God has done to improve my quality of life and for the wonderful people he has placed in it...largely for Daniel who deals with all of this with no complaints.
God knows, and God cares. His eye is on the smallest sparrow and on me. I don't deserve it, but I'm so thankful for it. God has been so good to me.
If you would like to go to hear Legacy Five's God's Been Good song, click on this underlined God's Been Good. It is the perfect inspiring song to go with the update above.
Thought for Today
Iwill lift up mine eyes unto the hills.
Click on the mailbox above to contact me (Rachael) or
write me at firstname.lastname@example.org
Our Daughter - Abby Paige Merritt
Rachael Merritt--Victory Over Dystonia
Victory Baptist has streaming video of their church services thanks to Daniel Merritt,
Rachael's husband. Services are held
Sunday 10:45 a.m., 6:00 p.m., and Wed. 7:30 p.m. central time.
Click below in the blue box at the time of the service.
It will be shown in the USTREAM screen on church website.
Pastor Isaac Farnsworth, Rachael's Brother
Rachael Merritt Homepage