Posted 26 April 2013 - 09:10 PM
Posted 26 April 2013 - 10:52 PM
You are lucky enough to live in the same state where the NPF medical director, Dr. Michael Okun, works. He is the one who answers all the questions on the Ask the Doctor part of this forum.
Now that you have reached out, you will discover that, whatever your particular PD story is (and there are as many stories as there are People With Parkinson's (PWP), there will be someone whose story could easily be yours.
My symptoms began in my late twenties and progressed so slowly and atypically that I was falling, moving very slowly, had no smile and a vacant stare before my daughter suggested PD. Even after my diagnosis was confirmed through examination, I had no idea what that truly meant. It became quite easy for me to overwhelm myself with information from too many Google searches and predict a very negative future for myself. If you can avoid that pitfall you will be doing yourself a big favor.
There is sort of an ongoing grief process that starts after diagnosis and continues as you lose function. There are also many, many things you can do to make living with PD less difficult. You didn't share too many particulars, so at this point all I can say is, "Welcome. Your life will change, but not necessarily always for the worst. Keep coming back!
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
Posted 27 April 2013 - 12:09 AM
Posted 27 April 2013 - 03:16 AM
I'm ok but my Parents are in denial and think it's just my nerves,LOL!! They finally accepted it after educating them on P.D.
Welcome Judo ! Seems you are on the right track !
Give your parents some time to adjust to this rather shocking reality. Their denial is a normal reaction. You are lucky they finally accepted it ! You should see my parents ! Until recently they kept telling me to get second and third opinions on my diagnosis, that i should go on vacation, relax, get pregnant, exercise, blah, blah, the works, whatever you can imagine...Everything but PD! No, that was plain ridiculous ! i didn't put much pressure on them, just thought that with time and-inevitable-progression of my disease they would accept it. Even now, 2 years after my diagnosis, 3 months after starting treatment, i don't think they have truly accepted this fact. They may never do. Might be better for them. Not for me ! A "family in denial" is a non-supportive family for us ! And lack of true support from the people we love means more stress to our body and mind, hence worsening of our symptoms. A vicious cycle. We need our family to understand and accept our disease. We need them to accept our limitations.As for me, after exhausting myself trying to "educate" my family, i realized that If someone wants to keep his head buried in the sand, he may continue to do so no matter how hard you try to open his eyes.
-English is not my first language !
-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).
Posted 27 April 2013 - 09:12 AM
Well Christie I will keep you in my prayers and Thankyou!!
Posted 27 April 2013 - 09:27 AM
Here's my advice, learn as much as you can about PD but at a rate and the topics that you are ready for and feel you need to know now. Too much information can be overwhelming Run, don't walk, to the best Movement Disorder Specialist (MDS) you can find. Take time to find and stick with the right MDS for you. Exercise, exercise, exercise (PD specific are best). Know that there is a great and caring group of folks that will support you here!
Some people find support groups very helpful others find them overwhelming when first diagnosed. You will know what is best for you. My favorite book for learning about PD (just a little at time) is "Navigating Life with Parkinson Disease by the American Academy of Neurology". Others have spoken highly of Dr, Okun's new book " Parkinson's Treatment: 10 Secrets to a Happier Life".
Posted 27 April 2013 - 09:53 AM
I will check out those books as well. My Tremors come and go but are slight tremors Not Shakey!! If you are not looking at my left arm you will not notice it since it's slight. In 2012 it started out as an internal type of tremors ( Do you know what I mean)? I felt the sensation that my hand was moving but it was'nt. So I thought it was muscle spasm due to working out with weights? I really don't know anyone near me that has P.D. so many times I feel isolated. I went to a grocery store a few weeks ago and the clerk observed my left hand and forearm tremble and She stared at my arm and asked me if I was COLD? LOL, I said to her politely; No Ma'ma I have Parkinson's Disease. Then She said, Oh Ok!!
Thank you Golden for taking time out to share with me. Tell your Husband that I will keep him in my prayers!!
Edited by Judo, 27 April 2013 - 03:08 PM.
Posted 27 April 2013 - 10:03 AM
Posted 27 April 2013 - 10:44 AM
The above was before I started on meds. The meds helps with the tremor. But my feet roll when seated. We went to a restaurant and I noticed a woman seated with the same rolly foot.
Hang in there.
Posted 27 April 2013 - 03:24 PM
Wow, Glad that I'm not the only one that had internal tremors at first! I appreciated your time and input. It really helps knowing that I'm not alone! When I initially told my Folks about the Internal Tremors they thought it was my imagination! Thats before I went to see my Doctor and he immediately referred me to my Neurologist. Every now n then my feet Shuffles, but the funny part was before I was diagnosed with P.D. my co-workers would say; "Hey Bro stop dragging your feet, pick up your feet"! I did'nt know as to why i was dragging my feet? Never had done that before!
Thanks Guys!! Be Safe!!
Posted 28 April 2013 - 06:48 AM
Jump out of that shell And into the water.
Thank you for your reply Beau's Mom! At this point I'm having tremors on my left hand / forearm and shuffle at times when i walk. But I pretty much do what I've been doing before P.D. came into my Life. I'm eating right and take my Meds daily. Since I was recently Diagnosed with P.D. I'm coming out of my shell and opening up slowly but surely!
Posted 28 April 2013 - 08:24 AM
You've come to the right place for support and information. The first book I read to learn about Parkinson's was recommended by my MDS...The Parkinson's Disease Treatment Book: Partnering with your doctor to get the most from your medications, by J. Eric Ahlskog M.D. Who is a Mayo Clinic Parkinson Specialist. I highly recommend it.
PS. What part of Florida do you live in?
Edited by Vanillab1027, 28 April 2013 - 08:25 AM.
Posted 28 April 2013 - 04:28 PM
Thankyou for recommending that book, I will surely buy it! I live in South Florida and I was diagnosed with the beginning stage of PD this past January. I'm still working out at my gym but of course not going with heavy weights anymore,lOL! Thank you for taking time out to share.
Enjoy ur Sunday and be safe!
Posted 28 April 2013 - 06:41 PM
Posted 13 June 2013 - 10:58 PM
I have had an internal tremor in my right leg at rest for 4 years with no change and no additional symptoms.
Dr. said if it was PD I would have had some progression to other symptoms by now, I am not convinced.
I know no other reason for a tremor on one side at rest.
Any thoughts/answers about progression of your internal tremor as first symptom would be greatly appreciated.
Posted 13 June 2013 - 11:29 PM
Posted 16 June 2013 - 01:16 PM
I had a hard time finding a nerologlist to give me a diagnosis without a dat scan.the hosptail lost out on that$5000. questionable test.
I finaly found a VA doctor who relied on the old stand bye of seeing how one responds to sinemet.This is the gold standard and also the least incvasive and cheap..
Again loss of sense of smell is a strong indicator especialy if the disease is in the family.
Posted 17 June 2013 - 01:01 PM
Posted 18 June 2013 - 05:02 PM
Meds: generic sinemet 25/100 x4 a day
Azilect 1 mg x1 a day
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