How long have you had PD?

I was diagnosed with Parkinson's DIsease in 2003. I spent w great deal of time studying and reading and talking to poeple about the disease. I came to the conclusion that I have had this for quite a few years prior to the diagnosis, but on a very low scale. When I was in high school I had hand trermors. I remember two occasions when I froze, withih the last 20 years;, one was getitng out of my bed in college and freezing ond falling to the floor, the other was when I was teaching jump rope to some students during recess and froaze. I couldn't move. There was also an incident, years ago,, when I couldn't bring my soup spoon to mny mouth. I also remember wearing high heeled shoes for the first itme in awhile, and feeing very dizzy and unstable. Do any of you believe you have had PD for many years and are just realizIng it now ? .

16 Replies

  • My husband was diagnosed 5 years ago. Like you I learned everything I could and we talked about his symptoms. He was 61 when diagnosed but has had symptoms of tremor since we were first married 42 years ago. .He has never had a very good sense of smell so while mild and infrequent, he has had this a very long time.

  • Yes my husband has had it for 18yrs but looking back when we were going though a lot of deaths in members of our family who were young, and we were stressed I remember Peter not being the same he was as always verysupportive but physically something was different, I believe he has had it least 20yrs now , its all very interesting to exchange stories, most of course we could do without but thats life, take care now

  • I was dignosed 6 years ago. When I was ten years old, I fell off a bike and hit my head. I've experienced depression and cronic constipation since I was a teenager. PD has been in my life for at least ten years. My sense of smell was fine until right before I was dignosed. I'm doing ok but have noticed a "wearing off effect" of my meds. It maybe necessary to increase the dosage. I'm seeing a new "Movement Specialist" in a few weeks. Keep Up The Fight!

  • It's been 8 yrs from formal dx but I knew something was wrong with my left side for 10-12 yrs earlier. These were pain & stiffness left limbs gradually getting worse & dxd at various times as:tennis elbow, frozen shoulder, housemaid's knee, trapped nreves etc etc - mainly arthritic conditions. I wore down my (supportive) GP until he asked if I would try a nerve trial. I did. the consultant said (at the end of the session): the good news is there is nothing wrong with your nerves - the bad news is you probabaly have Parkinson's. I was so pleased to have my concerns confirmed - there really was something wrong!!! It took a while for the implications to sink in. Almost immediately I was introduced to my consultant who took me through a series of what I now Know are bog standard little tests & condirmed dx. He is a gerontologist not a neuro which may explain his patient, unpatronising explanation of PD & it's implications in all areas of my life. 8 yrs on doing well(ish) & dreading the thought of him retiring.

  • my mum was diagnosed with it a couple of years ago, but i noticed that there was something wrong with her for a few years before that time, everyone execpt for myself and a friend of mine who saw and spoke to my mum alot all said that it was to do with her age and also living alone, i knew that it wasnt that, she started to put herself into a care home occassionally and finally the manager there asked the doctor to check for parkinsons as her doctor was seeing her more and more regularly but never even gave pd a consideration, so they did the prlimonary tests and they were positive, towards the end of her life, i noticed that her pd was becoming worse, none of her carers or doctor even noticed this and i rarely saw mum, i detected it by talking to her on the phone and she was seeing her doctor 2 or 3 times a week, i am so annoyed that it was not detected as well as how she was treated over another illness.

  • My mother lived in a small town in the midwest and had to travel far for medical assistance.SHe was treated for arthritis for years and was in great pain. IT wasn't until her funeral three years ago that her aunt told me they had PD her family. My mother never mentioned it. When I went to visit her at the nursing home she walked like a Parkinsonian, and discussed pain that I could relate to. I feel she had PD and it wet by undiagnosed. I wish she could have had the correct medication thus eliminating some of her discomfort. It was so hard to watch her fade away. THank you for sharing.

  • I am convinced that my dad had PD in the later years of his life although he was too stubborn to go to a doctor. He died of "pneumonia". I lost my sense of smell in the late 1970s but had no idea of the implications regarding PD. (better not to know????) When diagnosed in 2010, I didn't worry,, cuz Michael J. Fox has PD and he's handsome, athletic, dynamic, suave, debonair and will live forever...... Yeah, sure!! It has taken some personal experience to begin to understand what Michael, and others worse off, go through in the course of a day.

    Here's to a cure!

  • I do believe that handsome, athletic, dynamic,suave, debonair and eternal life are all characteristics of PD. DIdn't I read that somewhere? THanks Ronn for sharing.

  • THank you all for your responses. I agree that we probalby carried this around with us for quite some time and then tragedies appeared and the stress kicked it into full blown PD. Yes, Here's to a cure!

  • i too had symptoms of pd several years before being dxd - constipation - bladder probs and a frozen shoulder - not to mention my writing which got very strange - i ws dx in jan 2010

  • Reading all your comments makes me realize that my husband had P.D. years before he was diagnosed. He fell of his trike when he was about 4 years old and was unconsious and again off his bike when he was 18 years and again was unconsious. I truly believe that these accidents have contributed to his trouble now. He has always complained about being dizzy and has had no sense of smell for years. Trouble is though he now has dementia which is quite hard to deal with. All we can do is the best we can.

  • I am officially diagnosed 3 years. I am 40. I have a theory that I could have been born with a dopmaine deficit. As I remember being a child and having bad leg pain. Plus I had allergic reactions upon being prescribed Maxolin and Stematil which are a no no if you have Parkinsons as they enhance the symptoms. I had unexplained anxiety for years in my 20's plus bladder and leg problems. I always been very active during sleeping - walking, talking, vivid dreaming, shouting out. In my 30's I got stiff, starting tripping over my own toe, unexplained knee stiffness, heavy body feeling. I HAD NO IDEA. It was after a Gynaecological operation for endometriosis that my symptoms really came out as well as being told I could not have kids.

  • I've had PD 10 years. Looking back I realize I had a tendency to clutch my left hand and my left arm did not swing when I walked. My late-ex razzed me all the time about this. Plus I was major klutz. Did not realize I COULD dance until 50. Just needed a patient teacher who broke everything down for me. MISS him.

  • My husband was diagnosed 14 years ago when he was 35 ,he says he remembers having the symptoms for about a year before being diagnosed,As I didn't meet him until he had had PD for 3 years I don't know about his condition before being diagnosed but from the things he has told me I believe he had it longer than he thought.Also his grandad had PD.

  • I was officially diagnosed in December 2009, at the age of 57. For about 2 years prior, I noticed my walking getting slower, I'd lost my left arm swing, I seemed always to be constipated, my left hand shook, especially when I was tired/stressed. I took to sitting on my hand to cover up the tremor, as I was embarressed, but ignorant about PD. An examination at my Gp's for something else meant I had to undress & she commented on slow I was. Thanks to her, I got the courage to pour out all these symptoms, She sent me to a neurologist very quickly and the rest, as they say, is history!

  • I think I've had neurotransmitter problems for a long time, either with manufacture or transmission/reception or untimely cell death for unknown reasons. My knees were always skinned or scabbed; sometimes I tripped on air. Always had sleep disturbance.

    Was always sensitive to epi contained in Novocaine shots at dentist.

    As a teenager, I was in auto accident and knocked unconscious. Also did "pill rolling" as a twiddle (which I haven't done for years now).

    At 30, was dxed with narcolepsy.

    60 yo brought me sleep apnea dx.

    I was dxed two years ago with PD when I lost my balance a few times and my handwriting became cramped.

    Another neuro said I didn't have PD.

    The third neuro had me take Sinemet as a test. One 25/100 pill put me in bed for 3 days, exhausted and in pain.

    Had to have carotid rotor-rootered. For 5 days after surgery my symptoms disappeared or decreased to almost nothing; thought the 90% blocked carotid was the cause of my PD symptoms. But the symptoms returned, worse than ever, so it wasn't the artery.

    Anyway, I tried all the meds and the only one that helps a little is amantadine. That allows me to walk with just enough balance to not fall over.

    Still trying to find out the cause; I don't believe in "idiopathic" and finding the cause may help treatment.

    Did find out I had giardia infection which could be a cause. Never had a stool test before and was unsymptomatic so I don't know how long I had it. .

    Am now going to orthomolecular doc I found through Dr. Google to see if he can help.


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