2 – Judy’s Journey

Hi there! My name is Judy and I live in Northeast Tennessee. I am a mom, a daughter, a sister, a wife, a friend, a neighbor, and a woman determined to win in a fight with a chronic, degenerative illness …Parkinson’s disease!

I was diagnosed with Parkinson’s Disease in Nov 2002, after having soreness in my left thumb, shoulder and foot for about a year. I remember being so tired that summer. Just two years before that I may have had the first signs of something wrong when after taking Taekwondo for 3 years I was losing steam in class; it was harder to do those pushups; and my left hand would tremor when I held it out from my body. After going to an orthopedic doctor for 6 months and trying arthritis medicine, physical therapy, and a steroid shot in shoulder, he decided I should see a neurologist when I told him that people were asking me why I was limping on my left foot. Talk about getting scared really fast, that will do it to you.

You know how they say turning 40 is the pits. I can relate. I had just turned 40 when a couple of months later I would have a CAT scan to see if anything was unusual inside my head. Everything in my brain “looked normal” so the neurologist said “I want you to try this little yellow pill”. Thanks to the services of internet searching, I had already read up on what illness I might be diagnosed with based on my symptoms. From reading about Sinemet, ‘that little yellow pill’, I knew if my symptoms were improved by that little pill that I had a problem …..and it’s name in capital letters was PD. Sure enough on my follow-up one week after taking Sinemet, my husband and I were told that I had young onset Parkinson’s disease. The doctor put the best possible spin on the diagnosis, but I’m not too sure I heard much after those words: Parkinson’s disease. My mind was racing, thinking “my life is over…I’ll be an invalid soon” and all I wanted to do was not cry in front of the doctor. I made it to the car and wept like I never had all the way home and for several hours later.

After an easy transition to taking Sinemet and feeling almost like normal again, there were all the thoughts of “how long until…????” and “who do I tell and when????” “what about work????” I knew I had to talk to someone else who had been in this situation. .. In early 2004 I met Peggy Willocks, a lady who has Parkinson’s and who lives in a neighboring city. She has become a great friend, an inspiration, and a mentor to me. She started a local young onset PD group which I joined after meeting her. I’m learning though that support groups are not for everyone, but I find it to be a help and comfort as I can meet and discuss with others who have Parkinson’s how they adjusted to the diagnosis and that helps me figure out how am I going to cope with PD. I have made numerous friends online through some PD websites and have had the great privilege to meet several of them in person. These online friends give me hope and inspire me at almost any time of the day or night!

I will admit, Parkinson’s disease is a very scary disease—you do not know how it is going to progress, or how many pills you will be taking a year from now, or if you will consider a brain surgery called DBS where and an electrode implanted in your brain may help your tremors, or if you would decide to try a clinical trial to help further research about PD. Then there are more questions like: Will my family help/understand/support me? Will my friends abandon me? Will I be able to make a difference in this world with a chronic illness? These questions with no fixed answers can drive you crazy. But as you live with Parkinson’s disease you ‘discover it’ and realize it is different for everyone, just as the symptoms can be different for everyone you speak to about it. I find a peace in the midst of all my uncertainties by praying in faith to God – who I know knows all the answers! I find a direction and contentment for my life with Parkinson’s disease through the everlasting love of my God. I look around when I get down and notice other lives in darker turmoil or pain and I’m reminded “I have no reason to complain, but every reason to keep on loving, laughing, and living!”

Some tidbits of advise I would offer you and your family and friends if you have just found out you have Parkinson’s are: don’t retreat from reality, look for the good in every situation, find and hold on to good moral support, take this opportunity to look and learn about yourself, don’t ‘manufacture misery’ by looking too far into the uncertain future, stay active, explore new hobbies or tasks that you may not have considered before, find a cause you can support (like a cure for this illness) and ENJOY life in spite of the shadow PD may cast on your life!

I have taken this motto to heart: “I WILL endure for a cure!” And I intend to do just that and do my best to help others with this illness find hope and encouragement to face each day!

I would like to thank my family and many supportive friends for their daily encouragement and faith in me and in the possibility of a cure for this illness someday. I love you and don’t know what I would do without you!

All the best wishes for you in your journey,

Judy Hensley