Parkinson’s Symptoms are vague and show up randomly and can come out of nowhere. Then there is what is known as parkinsonian symptoms which are symptoms of Parkinson’s that no one can explain why they are happening. That is what I have and that is where I am with my diagnosis. Parkinsonian Symptoms combined with a possible stroke or Parkinson’s paralysis episode. The question, the answers lie within the hands of a neurologist. A neurologist I will see in two weeks. The other two neurologist I see refuse to do anything to treat me other than pour down multiple Parkinson’s pills a day but wont pull the trigger on a gaba or a dopa drug that could help me. That would be the next step to start me on a brain medication. I am already on multiple medications to tell my brain to tell a certain body part to cooperate. Example, I am now on a medication to tell my brain to tell my lungs to stop coughing. I cough chornically for no rason. This new medication has stopped that from happening and my lungs are healing from the irritation they suffered. I had no idea there was a medication to tell your brain to tell your body to stop misbehaving. I was hoping they could sign me up for one to tell my nervous system to stop acting a fool. Two weeks. In two weeks I may learn of one or learn of one I cant have yet. The decision lies in the hands of a Parkinson’s Doctor.
It’s not so bad having a rare neurological disease at this age. I am now allowed to have A multitude of excuses as to why I am still in my pajamas at 3pm and my hair has yet to be brushed. I may look homeless but at least I’m comfortable. And I am far from homeless as in past months of my life. I have a home now. A beautiful home in a resort community. I have a fiance that I can not get enough of. I just love him so much. I have a family of cats and a dog and they help Me get through the rough days. Matt is so good to me. I stay at home and rest. I sleep as needed and I do yoga in my garden and I meditate. I write. I read. I listen to podcasts. This diseae didnt ruin my life it helped me get back the life I deserved. I just have to take each day one at a time and rest and sleep when needed. That is the key to my happiness.
My hands and feet are becoming a little deformed from the twisting and moving they do on their Own. I forget words and phrases sometimes but Matt and my dad are really good at knowing what I am trying to say. I just sometimes skip over the words I do not remember and keep talking. It’s a coping strategy but it is also easier to just skip the word, finish the conversation and hope the other person knows what you are saying. I mean what else am I supposed to do? I tried guessing and playing charades with Matt to guess the word and it just kills what I want to say so now skipping the word and moving on works better. Charades with Sarah does not.
At the current moment I am swallowing over twenty pills a day at my worst and good days no less than ten. It’s a lot of medications and all of them are for either Parkinson’s or my heart or depression. There are a lot however, they are helping and keeping me alive and kicking. The depression meds are helping keeping me in the zone of happy sarah rather than depressed and suicidal sarah. I am in a good happy place on the meds and I can not be more thankful that I have found doctors and a therapist who are really helping me get into a good place and keeping me there.
On Tuesday the 9th I go in for an endoscopy, ultrasound of the pancreas, liver and stomach as well as biopsy of the pancreas, liver and stomach. The amount of pain I am having is equivalent to pancreatic cancer and has been getting worse. It has not responded to the last celiac plexus block and has me very worried as well as the new GI Doctor. This will be the first biopsy of the pancreas and scares me a lot but I am having faith and hope that we need this diagnosis no matter the answer I need this to move on with my life. We just need the diagnosis and I am having faith that this biopsy will answer those questions as to why am I in So much pain still and why have celiac plexus blocks been the only treatment that is working. I also had an aortic angiogram and the cardiologist confirmed I have an aortic aneurysm as well as a venous disease caused by venous insufficiency. Just more illnesses to add to my file. They are adding up. I was at twenty or something so add four more and now I am just getting out of control. Something has to give with this damn body! And I am hopeful that the time is coming. We will have the full answers and treatment plans in place soon. I just have to finish the testing and get ready for the next phase of my illness. I got this. For once I am ok. I will be ok.
The worst part about a chronic illness is the chronic part. It never goes away it is always there. I am learning, through therapy, medication and the voice of others who have podcasts and blogs how to emotionally and mentally handle an illness at the level I do. I am learning to be present everyday and enjoy the day. It has been hard to look at life and enjoy it. I feel bad that I am not able to work and I feel bad enjoying my free time while Matt is working. However, I am learning each day that it is ok to enjoy my freedom. I earned It and I deserve it. And if I cut out gluten I can control my celiac disease which means better days and more freedom from the house! That makes it easier to heal my body and I feel better when I stick on my strict diet. So emotional and mental healing with diet and exercise has proven to be treating me very well. I just have to remember to continue my progress even on bad days.
I hope that you or your loved ones never have to deal with anything associated with Parkinson’s or Rare Neurological Disorders. I wouldn’t wish this life on anyone else but I am learning that I was chosen for a reason to live out my days with a struggle. Easy good days are too easy. I thrive on the hard rough miserable days. Those are the days that I know I can truly live and survive.