Hope – Love is action. Action is hope. Hope is life. Don’t give up.
“Five to ten years…”
The neurologist showed us the results of PET scan – it was dramatic. My beautiful exceptional brain had dark spots where there was supposed to be white. I already painstakingly researched the results within scientific literature. I knew what he was going say, but part of me; the part of me that knew something was seriously wrong for so many years expected him to dismiss the results. He confirmed my research. First I was perversely relieved when the Progressive Non Fluent Aphasia was confirmed because it was validation of my experience. I am in the seventh year of showing marked symptoms.
Then he said those words gently. He didn’t say there was a small chance of treatment, of hope. He said there is no treatment, no hope. Five to ten years prognosis and I am in seventh year, and the damage is increasing exponentially.
I don’t fear death. I know for certain that is not the end. I fear losing life. Life is exquisite, the world is exquisite, people are exquisite.
My body went in shock. On the cellular level it began shutting down. Hope was burned, disintegrated. It is interesting about hope – I take it for granted, we all do. When hope is extinguished, we feel the finality. That is novel feeling. I felt that about my Uncle Bob’s death, I felt that when I lost a baby, I felt that about my stepfather’s death. Now I felt that about myself.
The rational side took over briefly preparing for the inevitable. We made a bucket list. I made a list in my head: go through my stuff and decide what to keep, who it was going to; the memorial service; and decide what to do with my body; when to tell my family and my kids. Then I sunk into a major depression. A good FB friend died from Lyme Disease and Bulbar ALS. She went so quickly. I was emotionally frozen, I had no motivation do anything, I was isolated. That made me beat myself; I felt like I was slipping into oblivion without doing my part for my family. And I stopped all treatment; medication, supplements, alternative treatment.
I felt alone. Nobody was protesting that diagnosis, nobody was investigating further treatment and research. My LLND forgot to put in the orders to resume IV ABX before he left on his holiday trip. “Don’t give up.” The male voice haunted me and said that over and over again with firmness. I felt defeated, I was too sick to do it alone. My friends on social media saved my life, and in return that gave purpose to my life to return that favor. But my friends, even though their input was greatly important; they couldn’t do the walking for me.
My husband and my family unconditionally loves me, that I am blessed. I wish I could clone myself, I am only one in the family to research and fight the medical system. My mind and my spirit works that way. My family is too busy in their lives, as they should be, to take up my cause on the ground and start running with it.
At first we thought the cause was Lyme Disease and co-infections. They certainly do play a part on what is happening in my brain. Lyme Disease and co-infections may be the catalyst for PNFA, but it may not be. I have a series of concussions over my life. It maybe the result of a virus. It may be exposure to toxins. After two years of intense IV treatment, no improvement in speech, in fact is it getting worse. And other signs that I am losing this battle. My LLND agrees.
It so strange – when my body doesn’t work, it so silent without pain. It just doesn’t work. We saw the dire effects on my upper body through barium swallow test. My upper body is fatigued and weak. My trachea doesn’t close, that means I at risk for aspiration. I can’t cough properly, and I can’t clear my throat, I can’t inhale deeply. My gag reflux is diminished, that means I swallow food mid chew. I choke constantly even on saliva. I wear a medical device so when I am alone if I choke seriously I can push the button. Several years back, I choked on saliva, fortunately I had a friend that knew what to do because I was blacking out. I know if that it happens again I can’t dial 911 – I don’t have time.
I have hyper reflex. My body sometimes jerks, and I have fasciculations. My body temp is low – average 95.6. My blood pressure is low – average 88/55. My face is numb, it spreading to my nose and forehead. When I think deeply my brain gets fatigued. It is a strange feeling. I was highly educated – my mastery of my knowledge is slipping away. Time – my time perception is diminished. I can’t hold onto ‘now’ is relating to the past and the present. I forget what day is it. I have remind myself all day long if it is Monday or Tuesday, what date is. I can still think deeply and focus for a short bit, and then I freeze. I am trying to grasp the concept and the context – it is frustrating. My spirit wants things in order, but my body doesn’t have the strength to do that. All I can hope for is enough energy to dress myself, and feed myself when I am alone. Phone calls are out of the question. I am sometimes push through – when I do that I feel like I am on the brink of collapsing.
I was contemplating self deliverance. I didn’t want to be a burden on my family. I didn’t want to be shell with my soul tied to this failing body and mind. On the other hand, I just let nature takes it course, it will give my children time to process my passing. I didn’t know which option was better. I still don’t. I can’t conceive deliberating leaving my family and my dogs. Maybe I have no choice. If death is in cards sooner than later it maybe silent. Silently my body it shutting down on me.
Hope is the supremest gift. Last week I visited Dr Linda Agresti, DO – she is my Athena. She is my GP, and I was there to inform her on the latest findings. She gave my renewed hope. She said that I need to seek Ivy Tower research studies. She directed me to ask my neurologist who are his mentors, and ask if he had PNFA who would he see. She said the advancements on neurology have expanded worldwide. She was fired up, and she is going to advocate for me.
Immediately my body responded. I felt lighter, and I am not afraid of slipping into oblivion. I have energy spurts occasionally, like today when I can write (slowly). I wish I could get my family on board with me. I can’t do it alone. I have been there before – feeling helpless, not knowing what to do, too busy with my own crisis in life, offering a general statement of assistance, assuming others would help. My mother is so supportive as can be living on the East Coast, and my mother-in-law and my sisters-in-law are very loving. But there is research and contacting and coordinating that may be hope for treatment that isn’t progressing. There is the daily routine that I am supposed follow with my nutrition and supplements and I just don’t have the focus and energy to do that. I can’t drive. I have vision loss.
My love is a constant in my life. He supports me unconditionally. He respects my decisions. He thinks about me when he is away from me. He does loving little things, and loving big things. Even when I am sick and on the couch all day in my robe, he thinks I am beautiful. I don’t know how he does all that he does for me. It is too overwhelming to be the sole caretaker of me.
My 18 year old son has given me the greatest gift a few days ago. I torture myself about not being the mother my children deserves, as I always wanted to be. He saw my crying, and he hugged me and kissed me. He said he could see I am a fighter, he told me everyone can see it. He said I am the strongest persons he knows, and he is proud to call me his mother. His love into action by saying that gave me peace.
A wise person told me “you are not dying, even if you are on death’s door; your are living until your last breath.” I am writing this to get out the message don’t give up on yourself and your love ones. Love is action. Action is hope. Hope is life. Don’t give up. I won’t.
January 16 2015