Each Day is a Gift

My fundraising to help find a cure for Parkinson’s Disease began essentially by default. The town nearest my home was holding it’s first ever half marathon, and the founders of the run had chosen to raise the money for Team Fox. I had two friends locally who were fighting the disease… and I had raised money for a few different charities in my youth – March of Dimes, Greenpeace – and I thought this might be a nice way to give back to my community while doing something I loverunning.
After that first half marathon I reconnected with a childhood friend on facebook. When Maralee told me she was diagnosed in 2001 with Parkinson’s Disease I was really upset. I felt like we were too young, it’s just not fair. Of course, Michael J. Fox was diagnosed when he was just 30 years old. What I have seen in talking with my friends, and listening to others, is that everyone approaches a serious disease in his or her own way. My friends have all kept very positive and life affirming attitudes. They are inspirations to us all.
The following blog was written by my grade school buddy Maralee… it offers a detailed perspective from the viewpoint of one who has lived with Parkinson’s Disease for over ten years.

I was diagnosed officially with Parkinson’s Disease in April of 2001 at the age of 34, but the symptoms were present years before the diagnosis. I just had no idea what it was! I was in denial when I first found out and requested a second opinion. I traveled several times to UCSF where I was seen by the head of neurology and observed by several medical students. It was later confirmed that I had Parkinson’s Disease. I have to admit there was a sense of relief that my problem had a name – but I was still terrified! I immediately set out to educate myself. There are several good books out there on the disease and of course the internet is a wealth of information. The Michael J. Fox Foundation is a good source of information and has helped me tremendously over the years. I get their newsletter each month/quarter which keeps me up to date on new trials and findings regarding PD. Michael J. Fox and his foundation have given me hope for the future! My family and I also donate money annually to the foundation. I have a sister and her family and a dear childhood friend who participate in annual runs for PD and raise money towards the cure, Thank you Patty and Amanda!

After years of progressing PD symptoms, I have had to change the way I do some things. Unfortunately, there are some things I have eliminated completely. I avoid stairs due to the fall factor! My balance had not been good and I find myself tipping over for no reason. I used to enjoy hiking… no uneven ground for this girl now. I fatigue easily and require a 20 minute nap almost everyday. I no longer work outside the home. I was forced to retire about 3 years ago from my law enforcement job. I was devastated by this at first. I was a Community Services Officer for almost eight years and enjoyed my job for the first time ever. I loved the connection with the community and serving them and I loved my law enforcement family. And, my husband Gregg and I shared something in common… He continues to work there as a Lieutenant Commander of our county jail. This was a tough decision to make. Along with my neurologist we decided it was time. Since then I have made myself busy, sometimes busier than when I worked! We have a twelve year old son who I have enjoyed being a stay-at-home-mom for! I volunteer for projects at his school that I can do from home. I also enjoy giving what service I can to members of my church. I refuse to let PD get me down!

In February 2011, after much thought and research, I decided to have the DBS treatment (Deep Brain Stimulation). I had heard about this surgery in 2003 at a PD conference where a doctor by the name of Benjamin Remington spoke about the treatment for PD – but I wasn’t too keen on someone drilling in my brain. After introducing myself to this doctor I proceeded to tell him I would never have this surgery. He told me I would come talk to him when I was ready, which irritated me at the time. Fast forward 9 years, I sought out this same doctor, changed my insurance for the year just so he could perform the surgery. I had the DBS surgery a year ago and I am forever grateful to Dr. Remington! I have the utmost respect and confidence in him. The surgery was a success. Although this type of surgery is just a treatment and not a cure, I am so grateful for the “time” it has bought me. I still have the disease, it is just masked by my battery operated brain. I am still hopeful for a cure in my lifetime.

Maralee after surgery

I have always enjoyed exercising and prior to surgery was very impatient waiting for my drugs to work so that I could walk with my friends. I have a group that I walk with and they have been so patient and supportive of my needs – often walking around my block an extra time waiting for my drugs to kick in. I never walk alone for fear of falling. Since surgery I have returned to the gym. Exercise, and just plain moving is crucial to PD patients.

Prior to surgery I was taking 16 pills a day (3 types of drugs used for treating PD). Today, I take 6 per day. I no longer shake or have those nasty involuntary movements, or walk with a walker. The best part is I hardly ever fall anymore! I used to freeze up constantly which caused me to fall almost every day. There are a few side effects – and balance is still an issue but it is much improved. One of the side effects of DBS is slurred speech. When I’m tired or talk too fast it is sometimes hard to understand me. I have learned to slow down and annunciate my words.

I attend a monthly PD support group which has been a great blessing. At 44 I’m the youngest member of the group. The majority of them are 60 and over and some are wheelchair users. They have been a huge support to me, and were my cheerleaders through my surgery and recovery. I am proud to call every one of them my friends!

There is no doubt having a debilitating disease is hard on any family, especially one with young children. My kids, now age 22 and 12 have adapted well to having a handicapped mom. They’ve had to chip in with extra chores and fetch things for me when I couldn’t move. They get frustrated sometimes but that’s life. They have definitely become more sensitive to others needs. I think my husband has had to take on the most responsibility. It’s tough being the caregiver. I worry about the burden I must be but I do know how much he loves me… And that makes all the difference in the world.

With PD I have learned to be realistic. I can’t run errands, shop, run kids everywhere, or work like I used to. It takes careful planning and accepting that sometimes you don’t get “it” done today. There is always tomorrow. You have to allow extra time to accomplish things. Time management is the key and accepting your disease is half the battle. And my motto long before PD was “Each Day is a Gift”. I truly believe this, even on the not-so-good days!

They call me a Young Onset PD patient, even though I don’t feel that young! At first I needed help with getting dressed, putting my boots on for work, and sometimes washing my hair. That was in the beginning when I was very stiff and rigid and lacked fine motor skills. Dopamine drugs seemed to help a little, when I remembered to take them. As the years went by I had to depend on these drugs to just get by each day. I have to admit I was depressed a lot and shook my fist at God and said “why” a few times. Now, I thank my Heavenly Father everyday for giving me this challenge because it has made me a better person and a stronger woman and lets face it, there are a lot worse diseases I could have!

Gregg & Maralee

My advice to anyone with PD and to their caregivers is simply – be patient. Allow extra time, love yourself, and love your family for helping take care of you. Exercise is key! Those happy endorphins really work, and fight depression. And remember “Each Day is a Gift!”

The Plattsburgh Half Marathon is Sunday, April 22. If you would like to help me to reach my fundraising goal for Team Fox please visit my personal fundraising page!http://www2.michaeljfox.org/goto/amanda

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