From most of the letters, it looks like we are all in need of a GOOD CARING doctor, and that it is very hard to find one. It seems that Neurologists don't have a handle on Parkinson's, so they get irritated if we ask a question that requires a staight, sensible answer, probably beause they don't have the right answer.
They all seem so indignant and rushed, and irritated that you have taken up their time when he has already told you that you have PD. It is liked, "Here; Take these pills and let me know how they are working, otherwise don't bother me for about 3-4 months," My Cousin, Lindi, who has Parkinson's for about 5 or 6 years, does whatever she wants and goes wherever she wants, and still is active with her music groups. She is a marvel, but she has a good doctor. The rest of us just have to struggle through trying to make any sense of this all. Well, I have to go; it is time to take a pill and have a bite to eat.
I initially went to my doctor as I was getting " pins and needles" in my left hand very regularly, he wasn't sure what was causing it (trapped nerve/ frozen shoulder ???) Referred for a Neurology appt which never came so had to be re-referred ( this all took nearly 12 months) eventually an appt came through- Valentines Day 2009!! That is a date I don't forget because it is the date my life changed forever.
I went to the appt (with my husband thankfully) thinking that maybe I had a trapped nerve and would be offered some physio and anti- inflammatories and be on my way.
But Oh No life had other plans for me - I walked into the consulting room and the Consultant just said walk across the room and back then take a seat. I wasn't even in there 5 minutes when he said you have got Parkinson's, well I felt like I had been hit with a Sledgehammer (my hubby too)
He said just go and live your life the best you can, don't go to any support groups as you will see people worse off than yourself and this will make you depressed !! When I left the Consultation there weren't any information leaflets or a PD nurse to speak to as it was an extra clinic that had been put on to get the waiting list down.We walked to the car in a complete daze and when we got in the car we cried and held onto one another while we tried to make sense of what we had just been told as we had 2 young sons (9 and 11) at home and I was only 43, working and now facing a very different future to the one we thought we were getting
Yes my life has changed drastically but I am still here and fighting PD every day. Some days I win and feel on top of the world and some days PD wins and I feel down, but you have got to dust yourself off and start again otherwise PD wins outright and I am not prepared to accept that yet while there is hope of better treatments and a cure on the horizon
Sorry if that was a bit long winded but I haven't really sat down and written about my experience of being diagnosed.
@A MyParkinsonsTeam Member. What I did was changed my neurologist with another neurologist who deals with
Parkinson's patients only. Thus I realize that she is more aware of the new medication and researches done. I think she is more uptodate on parlkinsons disease and treatments too,
Saw a neurologist,within a minute told I had Parkinson's he put me on sinemet.Returned after a month after having horrible side effects. He took one look at me &said stop your medication you need a Dat scan. This showed I was loosing dopamine. On reflection when I was first diagnosed I would of said I would like to delay medication & do some research myself. Never mind that's all in the past.
Although my symptoms are, also, classic for PD, my doctors keep on saying that they "think" I have Parkinsons, so I took the DatScan, which showed some signs of PD, but still were not judged as conclusive by the doctors, so more of the Mirapex and more questions than answers, If they don't know fore sure, what am I supposed to do except, as you say, just keep on treating ourselves as best as we can, Just keep on trucking,