My wife is now living with another; Parkinson's Disease
Where does one begin in attempt to encompass the impact of Parkinson's discovered in any loved one?
My wife Stephayne is a beautiful person and has always lived her life on the straight and narrow. A mother of three, a stepmom of two, a grandmother of two and my companion for over eighteen years and my wife for five years now. She is so young at heart and not even through half her life yet when the DaTscan revealed what I had suspected but, hoped was wrong.
It was very difficult to get the doctors to listen. The neurologist suggested her condition was anxiety which we found quite off putting however, we jumped through the hoops and we went to a Psyc for evaluation, so I could possibly get one step closer to having the neurologist prescribe a DaTscan. Yes, she was having some anxiety, go figure! "I shake, can't dance, my shoulder is in pain and I may lose my job! YEAH, I am STRESSED!" Needless to say, the anxiety is caused by her condition. I am no doctor but, enough said about that.
Seemed like we were up against a brick wall of "services" deeming a monetary gain priority before human compassion. Welcome to our health care system. We cannot afford health insurance, not even close but, we did qualify for a free DaTscan ($3700) which, was the first positive experience. Her claustrophobia was a major concern so, they gave her first ever Valium and allowed me to sit with her for the 35 minute scan, holding her hand and ankle. At one point I asked her how she felt; smiling she said "My arms feel like they are floating" and we giggled a bit.
It took a week and a phone call a day, until the last three calls on the last day, to get the Neurologists office to review the scan data, let alone return a call. She was prescribed the Sinemet and took her first dose the morning of Friday 08/11/2017 before she went to work. Three hours later I got the call, she had to be picked up as the first dose made her very sick. She could barely walk as well. The rest of the day she spent in bed but, the second dose went much better. Now on her fourth day, she has acclimated to the medication and her tremors have subsided considerably.
So here she is, very upset and having a lot of trouble dealing with this 180 degree turn in her life. So, here we are, I console her as much a possible but, feel odd murmuring phrases like; "Everything will be okay" because it is not and will not be okay until a cure is found. And WHEN one is, would we be able to move forward from a financial standpoint? I'll max out the credit cards and sell my motorcycle (my sole transportation) without question but, I just want to see her dancing again, sooner than later.
Stephayne is an amazing, caring, empathetic and giving person to a fault. She exudes such a positive aura that people feel good just being around her. Steph goes out of her way to taxi her daughter and her friends around well, she used to but, we now agree that will no longer be a service she can offer due to her condition. Steph also babysits the grand kids at the drop of a hat even when we have plans. Our rescue dog and four cats all take turns on her lap every day right when she returns home from work. (Dog is 70 pounds but he does not know that.) Speaking of animals, an indicator to Steph's positive energy would be an encounter with someone walking by with a dog. Steph typically kneels and says "what a beautiful dog" and when the owner replies "she/he does not like people" Steph extends her hand and the aggressive dog becomes putty in her hands much to the owners bewilderment.
I can go on and on about my eighteen years of having Stephayne by my side and how wonderful she is. I want only the best for her and desire to help her knock a couple items off her bucket list as well. Simple things like seeing and playing in the snow (FL native girl!), enjoying a vacation away from home longer than two days, riding a horse and bigger things like visiting another country and opening up an unwanted cat facility with huge play areas. As I myself am in my mid fifties, I am all to aware of how time flies (seems like I just put up the Christmas decorations and now we see them out in stores already!) and I can't work more than seven days a week and fourteen hours a day so, even just reaching the bucket lists handle is now even further from our reality.
I do however have a definitive schedule for our future. I will exploit my skills as long as necessary to ensure Stephayne can eventually leave her job to pursue her dreams before this diseases symptoms limit her even further. We are in this, in life together and although this may sound selfish, I am not happy unless she is happy and needless to say; who does not want to be happy? Whether in a big concrete house, on the road in an RV, motorcycling across the continent with a tent, blowing around in a sailboat, living in a trailer, living in this little place we are now or even homeless, we cannot imagine any scenario without being together.
We created a website, my wife's name name dot com, that goes into great detail of my wife's experience from suspicion to diagnosis created with the aspiration of helping others who have, or suspect they may have Parkinsonians Syndrome. Perhaps the information there will help streamline the process for others.
We hope all the best to everyone stricken with this horrible disease and hope a cure is found soon because no-one deserves to suffer from an incurable disease in a such a technologically advance society.
The donate button above allows you to donate directly to the Michael J. Fox Foundation not to Stephayne.
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease and to ensuring the development of improved therapies for those living with Parkinson's today. The Foundation is the world's largest nonprofit funder of Parkinson's research, with more than $800 million in high-impact research funded to date.Get Involved