My Parkinson Journey The Day of Discovery I will always remember that day in October, Tuesday, October 2nd, 2001 to be exact, when I left the neurologist's office in disbelief. I had made my way there by bus to my mid-afternoon appointment, leaving work after lunch. I had planned to make my way home by bus, but found that I was just too distraught. I fumbled with my cell phone trying to figure out how I was going to get home and whom to call. As my husband was teaching tennis at that time, I decided to call my eldest son, Cameron (23 years old at the time) to come and pick me up. He was working part time at the pro shop and had only another hour to work before his day ended. I then called my mother who is very emotional. She burst out in tears and made me promise to seek another opinion. My son soon arrived and as I relayed to him the bad news, I noticed a few tears coming down his cheek. First symptoms I think I first noticed that there was something not quite right with my body back in 2000 as I used to be an avid aerobics nut and I remember complaining to my doctor about aches in my left hip area and noticing that I did not seem as coordinated as I usually was. I also remember having a slight tremor in my right hand at certain times and can recall the day when a cashier at the drug store noticed the tremor and I attributed it to getting older. I also noticed that my balance and gait were off as when we went to the movies, I found that I had a difficult time passing in front of people as they sat in their seats. My feet just seemed to freeze and I had to force them to move. I also noticed that my handwriting seemed to be getting worse. First person to notice In July of 2001 I had an appointment with my gynaecologist for a pap smear as my family doctor was not able to do this procedure because of a large fibroid being in the way. I had not seen Dr. Bernstein since the birth of my youngest son who was 12 at the time and Dr. Bernstein had delivered all three of my sons, so I had known him for at least 23 years. It's really strange how he was the one who saw that there was something not quite right with my gait and suggested that I see a neurologist. I immediately made an appointment through my family doctor with a neurologist and the appointment was set for October 2, 2001. Before my appointment in October, I was anxious to find out what I was suffering from. My medical books at home were of no help as they did not pinpoint the various symptoms of either multiple sclerosis or Parkinson's, which I had by this time determined that I may have. Finally, on the weekend before my appointment, I found the one and only book in the library about Parkinson's written by Dr. Abraham Lieberman. Finally, I had discovered why my writing was getting worse. So, when I attended that day in October at the neurologist's office, I knew full well as to what my symptoms indicated. Needless to say when the doctor told me that I was suffering from Parkinson's Disease, I was absolutely devastated and burst into tears. This particular neurologist unfortunately was not very compassionate and did not have a very good bedside manner. He did not try to console me nor did he explain to me exactly what Parkinson's was and the medications that would help me. I was thankful that I had borrowed Dr. Lieberman's book from the library the week before so at least I knew something about the disease. My quest to find the proper care After finding out that the neurologist was not a movement disorder specialist, I decided then and there that I had to find another neurologist. The very next day I was on the phone to the Parkinson Society of Canada to obtain the names of doctors in the city that specialized in Parkinson's and discovered to my dismay that there were only a handful of specialists in the city with this specialty. Since I was working downtown as a Legal Assistant, I decided to contact a female neurologist who practiced at a downtown hospital and the appointment was made for January 2002. Much to my dismay, I found this neurologist even colder than the first specialist. She prescribed a medication to me without even explaining a thing to me about Parkinson's. I had read in Dr. Lieberman's book that one should try to find a neurologist who works in a multidisciplinary type of setting. So, from my very short list, I found the one and only doctor that has this type of setting and who practices just north of where I lived about 30 minutes away. Unfortunately, the doctor could not see me until June of 2002. I decided to then approach my general doctor to ask him to fax the specialist's office with a special request to move my appointment up. Much to my joy, before I even had a chance to start taking the medication prescribed by the female specialist, I received a call from the neurologist's office moving my appointment up from June to February 2002. Centre of Excellence Only recently have I discovered that my neurologist's office is one of only two Centres of Excellence in Canada as rated by the National Parkinsons Foundation. I am therefore proud of the fact that I had made the right decision and was persistent in getting my appointment. Long term disability Almost five years to the day in August, 2002 that I had returned to work full-time as a litigation legal secretary, I decided, along with my boss and management at the law firm that I had been working at for two years, to go on long term disability. After almost a year since my diagnosis I was finding that the work load was getting very stressful and the traveling downtown every day was making me very fatigued. I found that my voice at times seemed to get very soft to the point that I was asked to repeat myself much too many times on the phone plus the micrographia symptom was very annoying to me. I was quite surprised as to how fast the process was as far as going on LTD, much too fast actually, when I think back. On August 27, 2002, on my way to work, I had a terrible fall while going down the outside steps of a large office complex. I chipped one of my front teeth and had a bleeding lip and was rather shaken up. That very morning, a representative of the insurance company was to meet with my boss, management and myself to discuss my application for long-term disability, which by this time had been completed. Needless to say, because of my fall, I went straight home. On my return to work the next day, I was told by management that because of time restraints, the insurance company had advised that I had to work for only a week; that is up to September 6, 2002. This was both a blessing and a disappointment that this part of my life was ending so soon. Not only that, but on the Friday of that week, August 30, 2002, I was scheduled to have a minor bunion procedure done on my right foot. The Monday after the weekend was Labour Day and this would mean that I basically had only four days of work left. My husband's heart attack On my second last day at work, when I arrived home, Wes, my husband, said that he had felt a shortness of breath all day. After attending at the Emergency Dept. he eventually was diagnosed as having had a mild heart attack. At the end of September, Wes had a triple bypass operation but has recovered very well indeed. I guess it must be because he is a very active person as he is a tennis pro. 2003--a very good year 2003 was a very good year for me as at the end of June, I discovered many of my friends in this site who will remain very good and lasting friends. Every morning when I wake up, I can't wait to get into the room to find out what has happened in everyone's life, and also to relay to my good friends any new developments which have occurred in my life. It's truly a terrific group of people here who have shown such friendship, compassion, interest and sharing of themselves, for which I will be forever thankful for the rest of my life. |
