Page created by: Kirsti with Yolanda

January 6, 2016

Dear friends, family and colleagues,

This day has been different than most. It means a big step on a journey begun almost 3 years ago (and probably 7 or 8 years ago with related symptoms, as I've done some more research now). Today, I received a diagnosis from a neurologist that I have young onset Parkinson's disease (YOPD). In other words, I have Parkinson's disease, and the onset of symptoms started at a young age. I am 46 years old.

This journey begins with an event that I remember distinctly. I was training for the Colorado Marathon, which was to be run in May 2013. On a training run the week before the race, I had started at our house, and was making my way on about a 6 mile course to get to Cherry Creek, where I was then entered to run a half marathon. It would make for about an 18-mile day. At about mile 3 or 4, I was on a trail behind George Washington High School, and I just felt something freeze up on the front of my right thigh. With some difficulty, I finished the scheduled miles.

The following weekend, I ran the Colorado Marathon along the lovely canyon roads above Ft. Collins. I started out pretty fast (feeling almost like I could get a PR, especially as the race is all downhill, my second time running it), although not as much as my friend Stacey, who was running in her Colorado state race, and later that year would finish her 50th state marathon and 1 more in DC. Stacey and Mitch patiently waited for me at the end, while I needed to stop every 1/4 to 1/2 mile after about mile 20 to stretch my right thigh. It has been my 15th and last marathon, so far, and apparently run with Parkinson's disease, now that I look back.

The next weekend I ran another half marathon, this one back home in Denver, but continued to have difficulty with my leg. So, I scheduled an appointment with a sports medicine doctor. She did an x-ray and said, maybe you have what is known as tight jeans syndrome, as nothing showed on the test. I may have pinched my nerve around my front hip, so my leg was then tingly and numb. Hmmmm. After running into my friend Nicole at the pool soon after, she recommended a physical therapist who may be able to help. I start PT and dry needling in my leg to get ready for my next race, which I went to pretty faithfully every week for months.

We came upon the Colfax half marathon that I was going to run with Katy and Ansley, my running buddies. Ansley was fast, as usual, and Katy ran with me for a while. So sweet! At about mile 2, I told her that there was no way I could finish this race. Ironically, the route ran right by Stapleton, where I jumped out about mile 6, and Mitch and Elliott were waiting to cheer me on. We walked home, and I kind of broke down, as I have never not finished a race that I started. Soon after, tripping and much difficulty running meant I would eventually drop that activity, which I had been faithful to, particularly in the past decade. I just could not muster the technique and energy muscularly. I was mad, resentful and somewhat in denial about this turn of events.

One of the next a-ha signs I had with this process is during a trip to Minnesota to be with my St. Olaf girlfriends. We were walking by my friend Swen's house in St. Paul on a lovely trail, and someone asked why I was not swinging my right arm. What? I had not noticed until they pointed it out. Other activities and movements, probably related, were done with a great deal of difficulty, like typing on a keyboard, which almost felt like carpel tunnel. It had been going on for years, but I thought it was just due to tight muscles in my arm, which I had been receiving many massages for. Ouch!

After some serious falls running, and tripping up stairs often, my walking mobility continued to deteriorate. I shuffled around the house, dragging my right foot. About nine to twelve months ago, I had to concentrate quite deeply on picking up my foot. As a consequence, I would curl my right toes, causing quite a bit of pain in my upper foot, and, I think, leading to a bunion. My shoes hurt. Now, I am almost exclusively wearing Birkenstock sandals or flip flops, as it is summer.

I went to see an orthopedist, who ordered a spinal MRI. It came back to show I had three bulging disks in my cervical spine. I started PT again to work on my spine, which seemed to explain why my right forefinger was numb. But, he could not answer the question about my leg being numb, tingly, and jumpy, and why I could not seem to pick up my leg to walk normally. As well, his bedside manner was not great . . . so, let us go to another orthopedist recommended by a friend from yoga. Look at the MRI, go to PT, still do not know what is wrong with your leg.

And, in the meantime, going just half a block to the mailbox, or walking to the kitchen at work, became daunting. I am embarrassed and ashamed of my gimp. I also see my yoga instructor to rule out other mechanical causes, especially in my shoulder and elbow, which were restricted in movement. Deep tissue massages, especially with masseuse Jamie, make my arm feel better for a while.

I had a breakthrough in late spring 2015 as I was talking to my brother-in-law about my symptoms. Erik is a doctor. He suggested I go see a neurologist and get a brain MRI, just to rule out some worst case scenario causes, like MS or a tumor. Asking around, I find a well recommended doctor, scheduled an appointment, and was soon back at the imaging center on Colfax Avenue for another MRI. This time, the brain MRI took several hours, and involved an IV. Glad I am not claustrophobic. Breath and relax.

Several follow ups with the neurologist included genetic testing, blood work, and the observation that I have something called hemi dystonia, a movement disorder condition on one side of my body. Research, google search, reading, FB links, what is dystonia? And, let us refer you to a movement disorder clinic and start you on dopamine. This is July 2015.

Since that time, I have been taking dopamine replacement drugs. I also have experienced continued lethargy, lack of motivation, crabbiness, fatigue. My house has never looked so disorganized. I feel overwhelmed. I also start to experience a let up in my foot dragging, and I have times where I can type okay. I learn that I feel better in the morning, or after lots of sleep, and learn to take the medication with food to limit nausea. With a combination of things, I am having maybe 1 or 2 bad days a week, and the rest are sort of a new normal.

I call the movement disorder clinic at a hospital close to our house about every month to see about getting an appointment, after a referral from the neurologist. They are still reviewing my case. A call comes in from Israel, not the hospital, and it is my friend Jen. She heard from her husband, Max, that Mitch said I had a condition called dystonia. She told me she knows the condition and I should consider seeing a specialist that she worked with as a drug rep and now her former colleagues and neighbors, Kristie and Patrick, are working with Dr. Kumar. I feel a sigh of relief; I know him from the second referral by the neurologist. I soon get in touch with Kristie, who lives close by us, and she says she is going to be at this doctor office the next day and she will mention my case. Within a week or two, I have my records sent to his office and have an appointment scheduled. I am not thinking much of it, as past appointments have led nowhere.

This story brings me to today, when I went to Dr. Kumar, an internationally renowned expert in movement disorders. Several hours, physical tests, questionnaires and discussions with the nurse, and then the doctor succinctly and directly states what the diagnosis is. He said I am textbook, exactly what would be written in a medical book or taught in a medical school class regarding YOPD. There are no laboratory tests, just clinical interviews and questionnaires.

I began to cry after the doctor left, and the nurse was so wonderful in guiding me gently to the next steps; more of that to come. I stepped out of the office, toward the elevator, repeating the mantra, "God, give me the strength . . . ." Tears welling up again, and into the parking garage, the next thought is, "I am going to f___ing fight this thing." Not knowing what to do next, really, I call Mitch and asked if everyone could be at home, as there was hockey and band practice that night, as I needed to talk to them all together and right when I get home. A long 30 minute drive home, where my kids were worried. When I arrive, I am able to share with them where we now are with my symptoms. We have a diagnosis, finally! This is too much for a 12 year old and 15 year old to have to deal with. Damn.

I know as much about Parkinson's disease as you probably do at this point. One thing stuck out from this doctor appointment is that the diagnosis would not limit my life expectancy. (Note: Soon after I learn that life can be lived fully while managing symptoms. I believe it.) Otherwise, I have some books that the nurse recommended I read. I have some women to contact who have similar situations as me. I have websites to review. All in due time. Now, I feel like my heart is in my throat. I feel sick to my stomach. I feel completely spent. I feel scared.

Immediately following diagnosis, this story took an unusual path. I am diagnosed on a Wednesday evening, and Thursday morning Elliott and I got on a plane to Detroit with his Junior Pioneers hockey team to participate in the Silver Sticks tournament near Sarnia, Ontario, Canada. As well, Mitch heads to Copper Mountain ski resort for the first annual Dawg Nation Pond Hockey tournament, a fundraiser where his band also played. As I was across international lines without a reasonably priced phone plan, I could not talk to Mitch or others on the phone. I also am too overwhelmed to let anyone else on the hockey team know. Mitch has placed a zone of silence around him, too. It was extremely difficult emotionally and physically. However, I think it gave Mitch and me some space and time to process this diagnosis, such that when we were back at back together at home on Sunday night, we are able to share our thoughts and feelings with some of the shock having worn off and some plans for communicating with others taking shape.

Speaking of communicating with others, I am sharing this story for several reasons. First, I need to get it out. It feels cathartic, and part of the processing that I am experiencing. It just felt right to write it down. Second, it will be a record of my journey, and how I am at the point of diagnosis. Third, I do not feel up to telling it over and over, at some points, and so it is a way of communicating that can be passed along. Fourth, I do not like the thought of rumors or people talking about it, without it being my story. These last few reasons do not sound very nice, but it is honestly how I am thinking now. Note: I have since recognized that control of information should not be my burden, and feel the rumor mill is a legitimate form of communication, in this case. It is not a secret. I have started my journey . . . .

I also want to share how I am doing mentally and physically at this moment. As mentioned before, and as the doctor confirmed during our appointment, I can have symptoms of coming across rather short and salty. It may be a result of being tired. I also may not feel like doing things, or being social. It depends on how I am feeling. I have missed events from band concerts, to cross country skiing, to Denver modernism shows, to Anchor Center fundraisers, as I just cannot handle it. I am unmotivated at times, and feel overwhelmed physically.

In terms of physical symptoms, I have a limp still, I call it my gimp, with my right leg, but it is significantly improved from last summer. As well, when I am fatigued, especially at night, my right foot may turn inward as I walk. I also hold my right arm rather stiffly, and sometimes folded at the elbow, especially unconsciously. It does cause some pain at that spot. My right shoulder can tip forward. I have noticed recently that my lip smacks and I have a slight twinge/tremor in my right hand at rest, but this symptom is rare. As well, my muscles twitch and tighten up uncontrollably, at times, but it is not too noticeable. It is hard to sit still, especially in the afternoon, and difficult to drive a car for a long distance as my gas pedal leg is jumpy/exhausted/tight. And, my favorite, as I have stopped exercising, for a lot of reasons, I have gained about 20 pounds. Yuck.

There will be more to come as the shock wears off, I get my care team in place, let people in to the diagnosis, ramp up medications, add back in exercise, and talk to others, as I choose . . . . For now, I want to give a special thank you to early notified or inquired, to include for now: my family, Jen, Kristie, Karen, Vonda, Katy, Ansley, Amy, Kerry, Jill, Jennifer, Deborah and my zen master Callie.

With much love,

Kirsti