“Better than yesterday, but not as good as tomorrow”
I try to respond with this statement when someone asks me how I’m I am doing. Some days it is easier than others to respond with that. Lately, I am finding it much more difficult to say. For me, there is no respite from Parkinson’s Disease (PD) symptoms in my waking hours. They manifest themselves in everything I do from the moment I open my eyes in the morning until I go to sleep at night. Getting into or out of the bed is a struggle and dressing myself is a huge challenge. Making my breakfast, I knock things over on the counter with my clumsiness. It takes immense focus on my part to put on a sock or a glove. I am reminded of the loss of my strength every time I open a jar or rip open a package. Whenever I put money in my wallet, I can see how much my fine motor skills have deteriorated. First it was my left side that was failing me, now my right side is worsening as well. Writing a check, typing on the computer, opening the mail, petting my bunny’s head, washing my hair and folding clothes or sheets, all mundane tasks I have always taken for granted are now monumental efforts for me. I keep telling myself, if my symptoms don’t get any worse than this, I can deal with it and make adjustments, but the disease seems to progress a little more each day. It is like death by a thousand paper cuts.
Since I don’t have visible tremors, most people think I am fine. No one can see my ever present “internal tremors” which make me feel so weak and shaky on the inside. As I reflect on what Steve went through with mental illness and my PD diagnosis, I see so many similarities in the treatment of the two diseases. The irony does not escape me. It has given me an entirely new perspective on the hopelessness and despair Steve must have experienced.
Many medications exist to treat the symptoms of mental illness and PD (I am not aware of any drugs that can stop the progression of either disease). It could take weeks, if not months, to know if a medication has any positive effect in alleviating symptoms. In many cases, prescription side effects seem to be the same as what the drug is supposed to help. New drugs that are being approved for the respective diseases seem to be additions to existing medications to either combat side effects of another prescribed drug or for improving the efficacy of the first drug. To further add to the frustration, one may have to be weaned off a medication if it is not working. In addition, over time, efficacy of a successful drug may start to fade.
Witnessing the deterioration of our capabilities, in my case physically, in Steve’s case mentally, is frightening beyond belief. About a week to ten days before he passed, Steve said to me, “I am so afraid.” When I asked what he meant, he could not—or did not want to—explain what he feared. Most people have no clue as to what we are/were dealing with and how exhausting it is to put on the mask that everything is okay when it is not. As it was with Steve, so it is with me…things not always as they seem.
In Steve’s case, I believe his mind was in constant turmoil which was always a reminder to him of his mental struggles and I suspect since his illness appeared to be progressive and seemingly incurable, it compounded his anguish. In my case, my mind is trapped in a failing body that no longer listens to me which is a constant reminder of the incurability and progressiveness of PD.
Steve and I left/leave no stone un-turned (traditional Western medicine or alternative, holistic therapies) in our quest for relief from our respective afflictions. For me, nothing seems to help (yoga, boxing, weight lifting, walking, supplements, diet, prescription meds, acupuncture, meditation and physical therapy). For Steve, it was swimming, biking, running, hiking, supplements, diet, prescription meds, yoga, weight lifting and psychotherapy), all to no avail.
Every day, no matter how much I write in my gratitude journal and offer thanks for all I do have, when I wake up to my reality, the despair will still set in. But, much like Steve had done, I will put on my happy face and hope that today will truly be better than yesterday, but not as good as tomorrow.