WE MOVE
204 West 84th Street
New York, NY 10024
E-mail: wemove@wemove.org
wemove.org • mdvu.org
Determined to Ride
It is possible to retain much of the things you like to do physically - just not as strenuous.
– Jo Martinetti
“Determined To Ride”
It started out innocently enough. I noticed it was becoming difficult getting on a horse. Then there was the slight wag of the middle finger on my left hand. And, I was feeling a little stiffer in the morning. I assumed my difficulties were all hallmarks of the aging process.
Several years before the onset of these symptoms, I was experiencing substantial anxiety. I started on antidepressant medication along with the occasional sedative. The combination of medications seemed to help so I assumed the symptoms were from work stress. At the time I was a social worker in an acute psychiatric unit. Before that I spent almost 7 years working as a social worker in a group home for emotionally disturbed teenagers. It was natural to assume that work was causing my stress and anxiety.
During this period my longtime boyfriend, Joe, was amused by the way I told people off in my sleep. Apparently, I was quite profane. As time went by, my sleep became so restless that I would scream, punch, and kick. Mentally and physically, I was a mess. I remember thinking that it must be menopause. I turned to herbal remedies and started taking a lot of Black Cohosh. When the herbal remedies didn’t help I gave up and went to a doctor. (This was a huge decision for me given my deep distrust of doctors.) The first misdiagnosis was osteoarthritis in my neck, which the doctor used to explain the finger wagging. Misdiagnosis or not, I had already decided the finger wagging was the result of traffic stress. I rationalized that gripping the steering so tightly fatigued my hand and fingers. In addition to traffic stress, my self diagnoses included a thyroid condition, an adrenal issue, and hypoglycemia. Having little confidence in the medical establishment I took comfort in my medical “irrationalizations.” Consequently, I ignored my symptoms in lieu of seeing one more doctor.
About this time I was noticing that my left foot was starting to drag a bit during the first few minutes of my runs. This I figured was a problem with my running shoes. The seriousness of my medical condition hit home on the day I tried knocking on a door. My left hand wouldn’t knock; it seemed dead. Up until now I could explain away my symptoms, but not this new one. Then I couldn’t cue my horse with my left foot. I finally forced myself to see a doctor. He maintained that osteoarthritis was the culprit and sent me to an orthopedic surgeon. Wanting to rule out nerve damage, the orthopedic surgeon sent me to a neurologist. It took the neurologist about twenty minutes to diagnosis the symptoms as Parkinsonism, most likely Parkinson’s disease. And I began to sob uncontrollably, at which time this doctor suggested that I was “over-reacting.” He said that he had spent too much time with me already. So I made my way back to the outer office to give my co-pay to the gum-smacking receptionist.
I drove home in a daze. Once home I fell into a heap of tears and rage. I thought about the people who spent a lifetime abusing their bodies while I’ve exercised my whole life. Outside of the gym I was a long distance runner, running up to ten miles a day four days a week. I was muscled and fit. Besides being an 18 year gym rat, I’ve been a health food nut since I was a kid. Getting this illness didn’t make sense, it was just so damn unfair. After the anger, came the wave of fear. For me it was particularly frightening because as a social worker I had encountered so many Parkinson’s patients. Now I could only see them as powerless, victimized by their own bodies and enduring the severe side effects of their medication. In my despair I couldn’t stop imagining my own helpless scenarios of shaking uncontrollably or complete paralysis, or becoming mentally imprisoned by dementia. What would become of me?
I needed to feel empowered so I hit the self-help sections in book stores and surfed every PD site I could find. As a result of my pursuit to educate myself I came to understand that I had been experiencing symptoms of PD since I was 39. Of particular interest to me was that my initial symptoms of anxiety and night terrors were also indicative of early PD, while the physical manifestations of the disease appeared later. I also went to a new neurologist, a movement disorder specialist. She confirmed that I had PD. Thankfully, she treated me with compassion and dignity. Since that first appointment I have continued to work with her. I’m happy to report that I am on medication and grateful that the medication allows me the mobility to continue enjoying my life. Generally, I no longer dread my future, I admit that there are occasional bouts, but I truly believe a cure is in sight and I’m going to get there.
After looking over the rough draft of what I’ve written thus far my daughter suggested that I’ve been rather consumed with the negative. On the other hand, how can one not become preoccupied when it’s difficult to walk, make it to the bathroom on time, or think clearly because the medication makes you feel like a zombie. Again she suggests that I write more about the whole me…
My longtime boyfriend, Joe, likes to describe me as “one of those bleeding heart liberals.” I can’t say he is wrong. Professionally, I am a licensed Marriage and Family Therapist working for Patients’ Rights at the Los Angeles County of Department of Mental Health. I’ve been with the county since 2001 and I maintain a small private practice. As I mentioned earlier, I’ve also worked as a social worker. Personally, I am the mother of a beautiful and intelligent twenty-eight year old daughter, Nicole, and grandmother to “Georgie” my two year old grandson. (Georgie’s real name is Nicholas but that is a different story for a different time.) I have to say that my family gives me tremendous joy. It is the time I am with them that motivates me to push hard in fighting this stupid disease with everything I’ve got.
I grew up in Northern Minnesota, owning and riding horses since I was a kid. Right now I have a Palomino Quarter horse mare named Chick. I also have a Buckskin Quarter horse mare, Lizzy, that Joe forbids me to ride. Regrettably, I can no longer keep up with this beautiful quick and agile mare. She is the kind of horse I have always wanted, but ultimately, I know Joe is right. (I still have trouble recognizing my physical limitations.) Chick, on the other hand, is an easier going horse, who borders on the lazy side. On the plus side, she is gentle, forgiving, and patient with my slow mounts and dismounts. (Once I’m on, it’s all good!)
I have a great support system that has helped me to come this far. Joe is solid and steady. I can’t imagine how difficult this is for him. He is a great coach, pushing me to exercise when I don’t want to. And he is a wonderful friend, helping me with many things I can no longer do on my own. We’ve been together 18 years with many “issues” along the way but nothing as dramatic as this. If there was ever a test for love, this would be it.
I come from a wonderful family. My mother lives in New York state with one of my sisters, Elizabeth, and her family. Elizabeth and her husband have two girls. I try to visit them once or twice a year and my mother comes here for Thanksgiving. While my visits with my mother are infrequent, she somehow provides me with a shot of nurturing that lasts until the next time we’re together. Elizabeth is a good listener, something I often need. When I’m there for a visit I blow off all my accumulated stress by driving their backhoe, or excavator, or tractor around their farm digging holes, and moving stuff, etc. The work makes me forget about the PD for a time.
My sister Georgia lives in Texas with my nephew Rob. She has proclaimed that her new mission in life is to find a natural cure for PD. She is passionately convinced that there is one out there. Whereas Georgia emanates her intensity and can be rather obstinate, my brother Steve makes me laugh. He lives in Minnesota with his two kids. One positive outcome from the PD is that my family visits me more often. And I make it a point to keep up with my regular calls to them.
In addition to family, my life is filled with a rewarding job and many wonderful friends. My work is important to me and I am so appreciative that my boss and supervisors are compassionate and understanding. They are instrumental in helping me to continue feeling productive. My network of supportive friends helps keep me from getting too down or spending too much time alone. My friends at the ranch are an integral part of my support system. I spend more time with them than anybody else. It’s comforting to know that someone always keeps an eye on me, mostly the ranch manager Jill and her daughter Jessica.
Sometime ago I had a conversation with Dale Gibson and Mary Louise about having a Parkinson’s Benefit at the ranch. Well they latched onto the idea and the project is now off the ground and quickly gaining momentum. There is a huge group of ranch members participating and I am very grateful to each and every one. I suspect that the benefit may have started out as a wonderfully compassionate gesture for my sake. But it’s become clear to me that as everyone involved in this endeavor has come to learn about PD and the many people afflicted they have come to understand the broader cause.
I continue to ride, but I’m not nearly the rider I was since my body doesn’t listen to my mind. But I have discovered that the more I ride, the more I exercise, and the more I keep doing what I’ve always done, which includes eating healthy, being positive and trying to be as good a person as I can, the more hopeful and positive my future appears.
