When I first heard of this fundraiser and was informed that I had been invited to be a recipient I shuttered at the thought of exposing my very private life to strangers. I have never been comfortable with attention. But, when I thought about it I decided there is a time to be humble and there are times to say thank you. This is one of those “thank you” times.
I feel strange focusing on the down side of my situation. I work hard at staying positive. I don’t want people to feel sorry for me as I hold the belief that energy can create reality so I want people around me to focus on health and healing. But, if people don’t know about the challenges I am facing, they can’t help me to overcome them. So, I will focus on the challenges that I am facing, and how this fundraiser is a blessing.
So what is this disease that I have?
That is a good question. There is not a definite answer, yet. My team of doctors have not been able to say precisely what it is beyond being in the general category of a Parkinson related condition. They refer to it as “Atypical Parkinson’s,” mostly because I have some similar symptoms like compromised balance and weak arms and legs, but I don’t have the most common symptoms like lack of smell or tremor.
There is no test to say positively what it is. So, they treat the symptoms because the protocol is virtually the same for all of the Parkinsonisms. There is some speculation that I could have MSA, (Multiples Systems Atrophy), which is like Parkinson’s, but much more aggressive. I have deteriorated quite a bit faster than my colleagues who I have met on the Parkinson’s path. Regardless of what it is exactly, I turn my attention to keeping ahead of the symptoms.
I have fallen quite a bit, and I broke my arm. So, sometimes I use a walker, mostly at home because that is where most of the falls occur. My balance is compromised so I have to be extra careful. They say that you can stop the progression of the disease through exercise, so I involve myself in boxing classes and a spinning class. It has helped, but sometimes I am too weak to fully engage in the classes.
The biggest setback has been my voice, or lack of it. My speech has been affected to the point that I can no longer rely on it to teach my sessions with people and horses. This has taken quite a toll on my income.
I see two areas where additional support would be beneficial. They are personal and financial.
On the personal side, I want to feel that I have made a difference in my lifetime. I would welcome from those who know me, or know of my work, to share your thoughts and feelings with me about how I have touched you or someone you know.
And then, of course there is the blessing of funds raised on my behalf that will certainly reduce the stress caused by too many bills. It’s hard to not be stressed by finances when you are well and it’s much harder to deal with financial stress when everything in your life is hard because of your disease.