[Evonne]

I shared with my Facebook friends that I have PD. I also told them a little bit about it. I wanted to share it here. Here goes!

In light of the fact that April is National PD Awareness Month, I thought I would share a little more information about what PD is. PD results when your brain doesn't have the right amount of dopamine. Doctors don't know exactly why the dopamine is lost. There are many different theories. Some types of PD are genetic and might be triggered by something in the environment. As far as non genetic types of PD, there are theories that there is some type of inflammatory process or autoimmune process that causes it. There is another theory that we are all susceptible to PD, and something in the environment triggers it to appear. A perfect storm, of sorts. It is strange to have a disease in which the cause can't really be pinpointed. It kind of makes it hard to cure when doctors don't really don't even know the cause. They do know that PD causes movement problems, as well as a host of other problems. PD doesn't discriminate. People of all ages and races are affected by it.

My Neurologist started me on Carbidopa/Levodopa(Sinemet)about three months ago. That is the medication that is considered to be the gold standard in treating PD. It is sort of a test that the doctor's use to determine if you are responsive to Levodopa. If it works, you most likely have PD. They don't just base it on your response to the medication, though. Diagnosis is also made on a clinical examination and there are some cardinal signs that the doctors are looking for. I have what is called cogwheel rigidity. My muscles are resistant to movement. Stiffness and shakiness are my biggest problems. Before medication, walking felt like I was dragging my legs through the sand on a beach. It felt like I was fighting my own body just to move. It is very frustrating and exhausting. I do have a tremor, but it is mainly a result of the stiffness. After I started the Sinemet, I started feeling much better. It has made a huge difference for me. I am glad that I am feeling better, but frankly, the diagnosis is devastating. There is not a single test that can tell with 100% certainty that a person has PD, aside from an autopsy of the brain. I'm not signing up for that any time soon! I am still struggling to accept the diagnosis and I think it is because it can't be proven 100%. When I say that out loud, or type it, it sounds stupid. Especially because of the fact that the medication is working. Eventually, I think I will accept it.

At my appointment last month, my doctor started me on a medication called Azilect. It is a neuroprotective medication. That means that it is proven to slow down the process of losing dopamine. He described it as keeping the sand inside of the hour glass. The sand is the dopamine. The hour glass is the Substantia Nigra in my brain, AKA:The Dopamine Factory. The studies are promising. The more I am able to hold onto my dopamine, the slower the process of degeneration will be. Therefore, it will prolong my ability to function. I am scheduled for some Neurological testing on April 19th. The test takes a couple of hours. Basically, it provides the doctor with a baseline of my abilities. Then, they will have something to compare to down the road to see how much degeneration occurs.

Dopamine is a feel good chemical in the brain, associated with pleasure and happiness. The fact that I lack it explains the struggles that I have had with depression and anxiety. That is VERY common in PD. That was a light bulb moment for me! I have felt an undercurrent of sadness for awhile, but with no real reason to feel sad. It didn't make sense. Now, it does. There is really something wrong with my brain!

As a Christian, there are times that faith does not make sense. I struggle with that though. If it weren't for faith, I feel I would have nothing. I know that God loves me and he wants the best for me. He never said that life would be fair or easy. I admit, there are just times when I don't understand his ways. I am not just talking about my own struggles. I am just talking about the struggles of his children throughout the world. The victims of earthquakes all over the place, poor people everywhere, countries at war, women and children victimized all over the world. People dying from Malaria, AIDS, not having clean water, dying of other diseases. Sometimes I have to stop and ask where is God in all of this? Some people have told me that it might be easier not to believe in God. Then, everything that happens is what is meant to happen. Some people call it fate. They tell me that a person without God doesn't question. They just take it as it is. They don't spend their lives waiting for a Savior to come and rescue them. I respect other people's beliefs, or lack of beliefs. I just choose to believe that God is there in the middle of the storm. He brings comfort to the mother that is holding her dying child in her arms as he takes his last breath. She believes that once her son has passed on, he will be whole and healthy in heaven. She knows there is no sickness in heaven. God comforts the soldier that is forced to shoot and kill an enemy soldier. God speaks to him and reassures him that if he didn't pull the trigger when he did, he wouldn't be returning to his wife and newborn son. He knows he is forgiven. God brings healing so that a victim of abuse can heal and help other victims. God comforts the family and friends that have watched a person wither away and die. God fills some people with a desire to find cures for disease. Maybe there will be a cure for PD. Time will go on. Life will go on. I know that it is only God that will get me through this. Him, and an army of family and friends. I will be okay.

Love to All,

Evonne

[Conductor71]

Evonne,

You expressed so well what many of us feel. It really is difficult to come to terms with this in the first place; for me, despite my response to Sinemet, I couldn't believe that my five year Essential Tremor had really all along been PD; I was in denial until I found myself pregnant and faced going off all meds. I thought it would be fine as my symptoms had been extremely mild. In stopping the meds quickly, I had a very intense symptom rebound. When I lay motionless in bed like a turtle; no matter what, I could not turn myself over, well, it became more than a little obvious. Just like many other aspects of this disease from a Young Onset perspective, little is known about how to have a baby, and some of us discover the hard way that the hormonal changes can and do permanently worsen the disease process. Is it worth it to have my son? Without a doubt.

I do think we need to start going public with it. Many times, especially given the heated exchanges on health care, I have wanted to tell all of Facebook but cannot do so for professional reasons. This is one of the most maddening aspects of living with PD. I want to tell others, but worry about potential employment situations as I may face being a teacher without a school next year and seeking a new job. Doctors forget to tell you those sorts of things. Sites like the NPF perpetuate this myth that we'll be able to work untl we are near retirement age; then spend our free time pursuing hobbies. How we pay for the stamp collecting on SSDI, I don't know.

Thanks for sharing what I can't yet openly say. BTW, Evonne, you had been asking questions but was not aware you had gotten a definitive diagnosis, such as they are for most of us. I am wondering what sort of test you will have...is it a PET scan?

Laura

[Evonne]

Laura,

Thanks for the encouragement about sharing. I was a little apprehensive about it, but I just felt compelled to share. On March 2, 2010 my Neurologist diagnosed me with Levodopa Responsive Parkinsonism and handed me a brochure for the Washington State Parkinson's Disease Registry and he suggested that I register. I did register. My understanding is that it sometimes doctors say Levodopa Responsive Parkinsonism instead of PD early on in the process. When I asked the lady at the registry about it, she said that Levodopa Responsive Parkinsonism can mean that there is the possibility of other types of PD. I think she mentioned PSP and MSA. I know that I am a little atypical in that both sides of my body are affected. Stiffness is a huge problem for me. I have cogwheel rigidity that causes me to tremor when I move. I think that my doctor is wanting to watch me over a longer period of time just to make sure that it is PD, and not PSP, or MSA.

The testing that I am having, I believe is called Neurodiagnostic testing. It is where your reactions are timed, and your abilities are assessed. My doctor told me that the test can take two to three hours to complete. It is scheduled for April 19th, so I can let you know more after the test. He just wants to get a good base line on where I am right now. I will let you know how it goes.