Overdue Parkinson's Update

It's hard to believe it's been a year in a half since I've updated my blog and two years since I've been diagnosed with Parkinson's.  So much has changed in the Johnson family in the past year. We have relocated our family to Fort Wayne, Indiana. Jere started a new job with Indiana Wesleyan University and I found a 5th grade teaching job at New Haven Intermediate.  Lauren is still teaching in Marion and it's been so nice only being an hour away from her. Caleb graduated from IWU in April and he starts his new coaching job at Olivet Nazarene University this week.  Evan will be a senior in high school and is still enjoying playing basketball and being involved in his youth group.  It's wonderful being closer to Jere's family here in Fort Wayne.  We have adjusted well and are enjoying this new adventure.

If this is your first time reading my blog, I encourage you to read "My Story" and my first blog post on how this Parkinson's journey began for me.

This past year has had it's ups and downs with moving and starting a new job. I am always up for a new challenge but taking on new challenges with Parkinson's has a different twist to it now.  In the past year this disease has progressed.  When I left Illinois my symptoms were just tremors in my leg and foot.  This past year, my tremors have moved to my hand, I drag my right leg, muscle loss on right side, rigidity in my right hand and foot.  It's been slow but definitely more apparent. Many of you know I have decided not to be on any meds. I am not a fan of meds and I wanted to try some natural approaches with diet and exercise. FYI Parkinson's meds just mask the symptoms not cure or slow the progression. I tried the Keto diet for seven months as some people have had success with diminishing symptoms.  I felt better on this diet, saw some success but not as much as I would have liked. With moving and teaching, my exercise has not been the best. In March, I purchased a bike. I have started biking and am loving it. (thanks to my new friend Cheryl) Of course I am a researcher and this is one form of exercise that is great for Parkinson's.  The second form of exercise is boxing. I tried Rock Steady Boxing in Illinois but they only had day classes.  I will be starting this same program for Parkinson's patients this Monday night, I've been nervous trying it here and have been putting it off for the past few months but I'm jumping in head first Monday. (next blog post will be about how that goes) I need some accountability about going. So if I write it to you, I have to go.

I finally found a Neurologist in Indianapolis that specializes in Parkinson's. I had my first appointment Thursday.  He is young but very knowledgeable. As we met for two hours, it was more of a LONG conversation of my history, diagnosis, my fears of getting on meds, and his knowledge and expertise. He was very patient with me as I had many questions and concerns.  Long story short, I am starting on the meds I actually have been avoiding the past two years.  Levodopa is the best meds out there for Parkinson's patients. My biggest fear since the beginning, has been the long-term side effects of this medicine in the development of dyskinesia. I am young and will be battling this disease for many years. As he explained the pros and cons and not pushing me one way or the other, Jere and I decided it was time to get on meds.  I struggle with some of my limitations and my tremors and feel this is the best decision for me.  

It's been an emotional few days, as my diagnosis was confirmed again and was given an unknown timeline as all Parkinson patients are different in their progression.  During my quiet time with God yesterday, He gave me a verse that I've held onto in many different circumstances in my life. Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. (Phil 4-6) As the fear of the unknown future creeps in, I will cling to this verse. I know God has a plan (Jeremiah 29:11) for my future and my prayer is for God's will and if God's will is to heal me, slow the progression, or have no long-term side effects then that is my prayer. 

I am so thankful for my family's love and support the past two years during this Parkinson's journey.  This journey will be a life long journey and it has and will continue to make me stronger.

Stacey

Thankfulness

Since my first blog post of my Parkinson's diagnosis, I have had so many people reach out to me in many different ways.  I am so thankful for my friends and family and all the prayers and encouragement I have received over the past few months.  From colleagues giving me a basket full of sunshine to brighten my day, cards and texts with encouraging words, Michael J Fox's first book, a Christmas Angel box of goodies, and many prayers, I thank each and everyone of you from the bottom of my heart.

A Basket Full of Sunshine  

As this disease slowly progresses, I am continually reminded that I am not the one in control of my body anymore but I AM in control of my attitude and how I deal with it.  This is a daily reminder I work on.  I have noticed my tremors increasing not only in my leg but now my hand and arm. Not always noticeable to others, but boy can I feel them. I am looking forward to meeting my new Neurologist next week. (my other one moved to warm sunny Florida)  It will be interesting to get her point of view and see what her recommendations are in my progress.

Again, thank you for your support and more importantly your prayers.

Stacey

1st Blog Post Ever....A Little Scary

For many of you this is the first time you are hearing about my diagnosis of Young Onset Parkinson's Disease.  If it is, please click on the tab above for "My Story".  I explain how I began this journey.  

It's almost been a year since I first noticed symptoms of Parkinson's and almost four months since my official diagnosis. Little did I know, a year later I would be trying to deal with the day to day of  living with a non-curable disease. This new journey was not something I was expecting but I guess the Lord had other plans.  

As I began my research, I came across a few blogs of people who were also diagnosed with Young Onset Parkinson's.  These blogs were inspiring, hopeful, and encouraging as I was looking at an unsure future.  I was searching everywhere for answers to so many questions that I had.  As I read these blogs, I realized these were people just like me sharing their day to day lives with others about how their Parkinson's was affecting their lives in a positive and honest way. (ok there were a few negative) This was the beginning of a seed that was planted for me to one day blog about how Parkinson's is continuing to change my life.  Just like I was encouraged by these writers, I want to encourage others as well.  So, today will be my chance to start impacting others as I continue on my new journey.  With the continued support of my family and friends I will persevere.  A verse that I continue to go back to during difficult times in my life is Proverbs 3:5-6, Trust in the Lord with all your heart, lean not on your own understandings, in all your ways acknowledge Him, and He will make your paths straight.

Seventeen years ago our lives were changed by our sweet son Luke who was born with his own challenges he was going to face for the rest of his life.  With our short 2 1/2 years with him, we emailed our weekly updates to family and friends.  Those emails were forwarded to others over 100 times what we ever dreamed.  Blogs, Caringbridge, or Facebook didn't exist back then.  As I reflect on those days, writing those emails was healing to both Jere and I.  So as I start this new adventure in blogging, I hope you see this as my way to share what's going on with me and my Parkinson's but also a way to give hope to others. 

Thank you for joining me on my journey

Stacey