DIAGNOSIS POLLS Q6: Who accompanied you t... - Cure Parkinson's
Husband accompanied me but GP did not invite him into the consultation which lasted barely 5 mins and no specialist referral! Medication prescribed but no support or followup mentioned.
My husband has been with me on every doctor's visit, mainly because he loves me, but someone has to be present to digest all of the new information given me by the doctor. Also to discuss the new drugs available and the numerous small changes the doc has made over the years. My husband's input is always welcome by the doctor. There is not a question of being rushed through an appointment without all questions being answered to our complete satisfaction. Wish we could clone my doctor and send him out to everyone who is not so fortunate.
I went alone to my internist at the behest of my family, which consists of our son and my ex-husband. The doctor, whom I like, made the initial diagnosis compassionately, and referred me to a neurologist whose pamphlet was in the clinic. My ex-husband went with me to the first appointment at the neurologist. By that time, I had done enough research on my own to know what I was in for. My roommate/former spouse turned out to be a much better judge of that doctor than I was. I was just relieved to have the diagnosis confirmed and get started on medication (a tiny dose of Mirapex, .25mg 3X day for three weeks). I was glad to have company, especially since that doctor was a man of extremely few words.
I have Sarcoidosis which was active when I was referred by my Rheumatologist to a Neurologist because of neurological problems. My Neurologist told me he was expecting to evaluate me for Neuro Sarcoid; but after seeing me and performing a neurological examination, he was surpised to tell me that I had Parkinson's Disease. I went to my appointment alone thinking I would be scheduled for diagnostic testing before a diagosis could be made. I even told my husband, it wasn't necessary for him to go with me. It was just an initial consultation, I thought. After getting that news, how I had wished my husband had been with me! It was the most "alone" I have ever felt in my life.
At the time of diagnosis, I was shaking so badly that I could not drive and could barely walk. A friend who I have known most of my life took me to the appointment. By that time, I had pretty much decided I had PD. My friend's father had Parkinson's for years before he passed away. It was good to have her with me to help absorb the diagnosis. Even though I pretty much knew it by then, hearing the confirmation of it, I broke out in tears...
I have had some difficulty reacently with the parkinsons and my husband sent for the doctor because I was very ill she would not come and see me because she really did not know what to do for me.My husband was so angry with her sg=he said ok I will call tomorrow at five o,clock. My husband told her not to bother as I would be dead.
I went alone, but I called my husband at once, when I came out from the doctor. I cried a little, but told him that this was something I would die WITH and not die OF.
I like that ... "live with and not die of"
I went alone, I was separated at the time and had filed for a divorce. I went to doctor during the working day, had the diagnosis, went for a while hoome where my sons stil slept as they had a summer holiday. I cooked a morning porridge for them and went to work. There I told about the disease to two co-workers. We hugged and cried a little and continued working.It was hard.
I hadn't said anything to my husband or anyone else, but had been tracking 'symptoms' for a little over a year. I made an appointment and went alone to our family doctor's nurse practioner, "for a sinus infection", (The only way I could make myself go), and then "By the way, could you look at the way my foot and pinkie are dancing around.") I was working at a multi-level retirement community, so I had pretty much felt I knew what the diagnosis would be. (but just didn't want to hear the words). He said nothing regarding the movement, but responded, "I think I am going to send you over to see a neurologist and have him make a diagnosis."
The neurologist was very kind-hearted and after my evaluation, sat at his desk a few moments, then took a breath and turned to me and with the most compassionate voice said, "I will want to run some tests, but I believe it is "Early Stages, Young Onset, Parkinsons Disease". Those six words changed my life. After after a few seconds I was composed again and the thought went through my "Why NOT me?" Someone has to be the one diagnosed, how can my faith be used to reach out to others?"
I looked at my husband, told him I would not make him stay; to which he replied, "Oh, No you don't! We are in this together." That was nearly 11 years ago. I may have been diagnosed with PD but it will not rule me!
