diagnosis
In the shade of the giant oak we sat and reminisced about respective friends, family, and past experiences. Midst the beauty of the garden he designed long before the ALS overtook his freedom to dig, mulch and plant, a passion exceeded only by his love of music, we cherished moments of common interests in gardening, cooking and general every day aspects of life. For that hour and a half we were transported from the routine of managing life’s negotiated impediments to a magical place of sheer presence in the garden of the living past and present. As our time of freedom from agenda came to a close I was overtaken with a sense of gratitude for this time of sharing and the beautiful and bright garden so lovingly crafted from which we were about to depart. Gratitude and the care of others who value the human designer of the garden serve as nourishment for the garden’s growth and bounty of flowers springing forth as its testimony. For that time, for that place, and for the sharing of friendship and life’s blessings, we give thanks. From dreams and toil come the roots that ignite fresh memories in the soil of thankfulness. We are grateful to uncover each day that life is greater than a diagnosis. It blossoms brightly within the garden of gratitude in the midst of its creator!
By: Cathy Garrott
Some days I do far better at coping with the frustrations of life with PD than I do other days. I guess that’s just a part of “normal” life. What used to be, is what I considered “normal,” but all of that has changed. And now I have a “new normal” to get used to and must learn how to cope with it. I’m not alone with this kind of feeling and challenge. My sister is trying to learn how to cope with the fact that she had a stroke, and her world is turned up-side-down from the “normal” she knew up until September of 2012. I am blessed with a caregiver who has looked into what I am dealing with, and in every way he can he seeks to help me adjust to doing as much as I am able to do. He acknowledges that I will never be the “normal” I was before the PD diagnosis, but walks with me in learning the way of my “new normal.” Some things I can deal with easily at this point, others I am learning to cope with day by day. Getting use to things as they are now, and letting go of what we were comfortable with before, is a challenge EVERY person faces … whether they realize it or not right now. It can be political, health wise, relationship, temporal, or eternal.Getting along with the changes I have faced, and will face in the future, is a challenge that every new day brings my way. I am glad that I am assured that I can do all things through Him who strengthens me!
Weakness and some atrophy on the right side have been the sign and symptom of this PD diagnosis. Overcompensation on the left side has rendered muscles there sore and aching. A visit with the Physical Therapist rendered a series of exercises that target muscle strengthening and relaxation of others. She suggested a “test” walk with a foot brace that is designed to restore “follow through” with each step. I was amazed! The pain went away and my gait seemed restored. Pride swept in as I masked my eagerness with the thoughts that what had been lost could be restored with the right exercise regimen. Three weeks passed and exercises were at least moderately engaged. As the trek to the therapist appointment ensued it became obvious that the exercises had rendered virtually no measurable improvement, although some flexibility had been restored. We chatted about the exercises and I admitted my relief with the brace. She confirmed my acceptance by noting her observation of my enhanced walking ability with the brace engaged. Set with additional exercise routines, our next appointment will include the prosthetic brace designer. The act of surrendering my ego to embrace the agility provided by an orthotic device has rendered me eager to engage the freedom promised. Gratitude now invades the space that was overcrowded by ego and thankfulness lifts hope for greater function in this blessing called life!
By Cathy Garrott:
Last week I received a letter from a dear friend in England telling me that her younger sister had just been diagnosed with PD. She said the whole family is somewhat in shock and struggling to grasp what this means for the future. Her letter was somewhat of a cry for me to help put some normality back into their lives, to offer some hope that everything is going to be alright and they can get back to life as they have known it before now. Unfortunately I do not have the power to do that, only God can do that kind of thing. But I can be used by Him as one who can come along side to exhort, encourage, urge, and comfort … a kind of paraclete with skin on.
I spent several hours pouring my heart out to her in an 8 page letter. I did not want to say “Welcome aboard the PD train of life” because I don’t think anyone would find a “welcome” comforting at this time in their life. In fact, I have yet to meet someone with PD who thought of this as a welcome diagnosis when they received it. I shared with my friend the myriad of feelings and emotions that bombarded my heart and mind when I was first diagnosed … denial, anxiety, grief, anger, pity, and more. I told her that I struggle with it mentally, emotionally, and physically every day. Laying my heart open for her to see what her sister is probably going through mentally, I tried to be as honest and open with her as I felt she could handle at this point. Her sister’s caregivers are going to need to understand what is going on in HER mind and help her deal with things as SHE is perceiving them. They are going to need to be a paraclete for this sister, offering hope in times of despair.
Listing several websites that will be of help, I encouraged her to share my letter with her sister and the rest of the entire family … so that they will be good caregivers from the get-go. We need to be surrounded by people who offer us understanding and hope … whether we have PD or not! We need people around us who will encourage us to do all that we are able, and help us see how much that is.
According to Webster, Paraclete is a Latin word that was used by the early church to mean “HOLY SPIRIT.” (The reference for this word is found in John 14:16, 26; 15:26; 16:7.) It was taken from the Greek noun parakletos” – which means literally “advocate, intercessor” and from the Greek verb parakalein which means “to invoke.” These 2 Greek words come from the word stem parakaleo which means “I exhort, I encourage, I urge, I comfort.”
All four of my children developed a propensity early on for responding to commands or direction with a respectful and sincere “why.” Wanting to be the patient and ideal (in my mind) parent, I would attempt to respond with the simplest explanation I could muster. After the fifth or so inquisition, the ideal parent gave way to the seemingly expedient one with a “because I said so” response. I think they got the message that it was no longer “safe” to inquire, but “safer” to relinquish the quest for further understanding. When I received the initial diagnosis of Parkinson’s disease, an honored guest at my short lived pity party was the elusive Mr. Why. Emotionally I was bombarded by his insistence on knowing why PD; why me; why now? The churchy little response that “this is in God’s plan for your life,” was not sufficient to rescue me from the flood waters of self pity that were washing over me as if a dam had broken. As I wiped away the tears I asked the question; “why not”? I was again flooded with MY reasoned agenda of why I should not have PD, but each of them came back to their home deep within self obsession. The rational reason for my having PD was that pyramidal cells in the area of the substantia nigra of my brain were dying off, thus diminishing the production of dopamine, an essential neural transmitter, impacting movement and often mood. Why that was happening to me at that time may never be fully answered. A genetic assay determined that I have no marker for the disease. It does not eliminate environmental contributors, however. Ultimately, I have moved from the place of why to the place of how. How do I now live a life as full as possible with what I have ability to accomplish? I have moved from the place of being a victim of this to a place of being grateful for the discovery of possibilities before me. I admit that I have not unloaded the moving van completely, but the bulk of the heavy stuff has been discarded and part of the joy that is now the journey is decorating with gratitude this refurbished abode.
They both shared bright smiles as we greeted one another. It had been over forty years since my cousin and I had seen each other and here she was before me, with her husband by her side. They had arrived in the States just the week before. My cousin and her husband went to Japan in 1981 as missionaries. He is pastor of a church there now and also teaches at a university near their home. The glow of the smile that even lights up her eyes is the same as I remember from those childhood years when our families would visit at their home or ours. My cousin also lives with Parkinson’s disease. She was just diagnosed in August of this year, so she is in the early stages of wrapping her mind around the concept of the disease and what it does and does not mean. Her journey to diagnosis was circuitous. Amplifying her symptoms may be an apparently non-invasive brain tumor she has known about for a few years. Regardless of symptoms and challenges wrought there from, our time together was filled with memories and the joy of current events. We will see each other again in a few days at a family reunion and I look forward to greeting distant relatives from long ago. My cousin will be a frequent contributor to this blog, once she is back in Japan and settled into her routine. As she and her husband drove away on their journey to her brother’s house, I paused to utter a prayer of thankfulness for fond memories and re-connections having been made. I am discovering blessings of connections new and renewed.