Thanks for visiting my CaringBridge website. We are using it to keep family and friends updated as we walk this new road by faith. We appreciate your support and words of hope and encouragement. We hope this will be a good way to keep everyone updated about my health status while easing our correspondence burden as we try to keep up with the many dear ones who care about us. Thanks for so many inquiries and for your concerns and prayers.As you read our updates we request that you do not share this CaringBridge link via social media.
I’ve been diagnosed with a rare , DEGENERATIVE Neurological condition called SpinoCerebullar Ataxia. The blessing is that my uncle was diagnosed with the exact same disorder by a doctor at the Mayo Clinic. We are sharing medical records. In addition it seems that I may have an autoimmune disorder which makes things doubly challenging. Although there is no cure , I am under the care of two rock star Drs. with the hopes of slowing down the progression of this debilitating disease and bettering my quality of life. I will also be seeing a Neuroopthamologist in March to help with my eyesight. Currently I am a medical guinea pig. Due to the rarity of this disorder Drs. are trying different medications and therapy not knowing how my body will respond.
I will be one busy camper, so I apologize ahead of time for not being able to keep up with correspondence.
The part of my brain that is most affected currently is the Cerebellum which controls cordination of body movements. Here are just a few of my symptoms so you can better understand why I cannot communicate well.
-major balance issues ( resisting urge to fall frontwards, sideways and backward). Basically walking / navigating stairs, and completing daily tasks -blurred vision -headaches _motion sickness -dizziness - thought process, memory issues - slow to process
My Neurologist (Dr. Situ- Kcomt) is part of a Movement Disorder team at Nebraska. Med. center, in addition I am going to be working with an Ataxia expert from Germany after Christmas ( isn't God great?!)
This Ataxis expert ( Dr. Doss) leads the newly formed Ataxia clinic at the med. center.. I can clearly see the hand of God weaved through this entire ordeal. He is providing me with the best of medical care.
Still I have many needs, and these needs are swiftly changing. that include ( in order of importance):
1. A need for an attorney who specializes in obtaining social security disability who can offer services at little to no cost. The diagnosis of Spinocerebellar Ataxia not only qualifies me to receive a small amount of disability income, but the diagnosis should speed up the process of receiving it. I've been forewarned that it will be a battle nonetheless, but with the help of a qualified disability attorney and adequate documentation from my doctors I should get it fairly easily!
2. A loving home for our harder to place cat (Julie). She is a rescue cat who suffered abuse of some sort. She has come a long way, but needs to be cared by someone who will understand her need to be left alone and loved on her terms. She is a lover and as loyal as they come, but would absolutely not do well with children. . 3. People to offer me help during the week with household tasks, BASIC food , needs and spiritual support.
4. Major prayer support- as there is alot of stress on me and my family members
(after Christmas I will meet with several Drs. to decide whether or not to move forward with IVIG THERAPY)
5. If anyone has any audible tapes on short encouraging words from the Bible, that would be much appreciated as it is sometimes hard for me to read even large print
6. If a few people have flexible schedules and can offer any help with transportation to and from Physical Therapy. and occasional medical appointments ( this will be a bit unpredictable as some of these therapies require me to quarantine. If anyone is aware of a free transportation service through TRICARE medical insurance please let me know.
After a very healthy life this has been a sobering, surprising reminder that our health is not guaranteed. While this is not the story I would have chosen to write in this season of my life, my eyes look to our sovereign Lord Jesus Christ who is our good God. God’s plans for us are perfect and He has planned exactly the details of our lives in love before we were born. Please pray for me as I fight this battle, for my family as they walk this hard path with me and ask that God would get all the glory in this story. He is our Rescuer and has overcome both sickness and death by the resurrection of Jesus Christ for us ( Hebrews 12:2)
The best way that you can help me is to send encouraging words and scripture, by writing a note here occasionally on my CaringBridge website (or sending mail to me at firstname.lastname@example.org). I won’t be checking email as much as my condition makes reading and texting very difficult. Thanks for your understanding, your expressions of love , and most especially for your prayers.
The needs are too great and overwhelming for anyone of us. We serve a great God and I trust that He will fill in the gaps! I thank you, my wonderful friends and family . Some of you have been doing too much and are worn. I ask for prayer support for everyone involved, and please take heart and know that I am doing everything possible ( setting up an Uber App, etc... ) , yet it is a burden that I cannot handle alone, especially as cognitive decline is involved. May God bless you all with a warm, wonderful Christmas like no other!