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#1 Judo

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Posted 26 April 2013 - 09:10 PM

A few months ago I was diagnosed with the beginning stage of Parkinson's Disease. I started having hand tremors on my left hand approximately 2 years ago every now and then and I thought it was muscle spasm due to working out at the gym. Then on December 2012 it progressed and I went to see my primary Doctor who immediatey recommended I see a Neurologist. My Neurologist gave me some office exams inwhich i passed all but one at which time my Neurologist advised me to have a Dat Scan done in the Hospital.It was an all day procedure but I did it in one shot without moving! I then went to see my Neurologist thinking that I was ok. Bad News, As per the Dat Scan results It showed that I was positive with Parkinson's Disease. Wow, I was in denial and did'nt want to accept it. Since my hand tremors were constant daily I accepted it and decided to take the meds and fight it! I tried to hide it from Family and Friends but they noticed my tremors and so I came clean and told them that I was in the beginning stage of P.D. 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. This is the first time I opened up on a Discussion site about my P.D. I've read one book about P.D. but hope to get some advise here. Thank You!!

#2 Beau's Mom

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Posted 26 April 2013 - 10:52 PM

Glad to meet you, Judo, but sad to hear you have a cause to join us.

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!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#3 Judo

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Posted 27 April 2013 - 12:09 AM

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!

#4 christie

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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).


#5 Judo

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Posted 27 April 2013 - 09:12 AM

Hi Christie, I think my Parents are still in Denial but have accepted it so not to get me frustrated. :???: Since I'm very active and I'm 6 ft 4 in Tall they don't see me has a PWP. Really they dont know anything about Parkinson's and neither did I until this past January, when i was diagnosed with it. I purchased one book called; "Parkinson's Disease for Dummies" last week and I'm almost done with it. It's pretty informative. My cousin recommended I see a movie called "Love and other Drugs" with Anne Hathaway. I finally did and it was ok. Made me alittle comfortable that I'm not alone.:-)
Well Christie I will keep you in my prayers and Thankyou!! :razz:

#6 Golden01

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Posted 27 April 2013 - 09:27 AM

Those close to us sometimes do need time and information provided in different ways before they eventually find a way to deal with the illness. My husband has PD, when he told his mother, she responded with "Well, I guess that is your cross to bear" and changed the subject. Down the road, she began attending a "caregiver" group and began sending us info that she had learned about PD. We live in different states and she hadn't mentioned she was even thinking about going to the caregiver group. It was her way of coming to grips with my husband's diagnosis. I've seen other family members for whom denial works the best until, sometime down the road, they are ready to learn more about PD.

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".

Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine; Sister and Best Friend from Childhood also have PD


#7 Judo

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Posted 27 April 2013 - 09:53 AM

Thank You Golden01,
I will check out those books as well. :smile: 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. :cool: Tell your Husband that I will keep him in my prayers!!

Edited by Judo, 27 April 2013 - 03:08 PM.


#8 Island Woman

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Posted 27 April 2013 - 10:03 AM

Keep a positive attitude...maybe hard some days...we all have good and bad days but we keep educating one another here. Be open and when you have questions ask or even if you just want to vent...always some one to listen.

Patricia

#9 MarciaJ

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Posted 27 April 2013 - 10:44 AM

Hi. I had internal tremor first but didn't know what it was. I was diagnosed in 2006. At one point I went to the dentist and the receptionist asked if I was cold because of the tremor. I didn't fess up like you did. I just said it was pretty cold out. While in the dentist chair they asked if I would like a warm blanket. I declined but didn't tell then what I had. I did tell the dentist and the one doing the paper work. I tell on a need to know basis.

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.
Mj
<3.<3.<3.

#10 Judo

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Posted 27 April 2013 - 03:24 PM

Thank You Patricia and MJ!!
Wow, Glad that I'm not the only one that had internal tremors at first! I appreciated your time and input. :razz: 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!!

#11 Luthersfaith

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Posted 28 April 2013 - 06:48 AM

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!

Jump out of that shell And into the water.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#12 Vanillab1027

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Posted 28 April 2013 - 08:24 AM

Welcome, Judo!

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.


#13 Judo

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Posted 28 April 2013 - 04:28 PM

Hi Vanillab,
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! :cool:

#14 vipowitz

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Posted 28 April 2013 - 06:41 PM

I live in So Fl also, in pb county. who is your neurologist?

#15 invisable

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Posted 13 June 2013 - 10:58 PM

For those of you with internal tremor as your first symptom, how long did it take for another symptom to add on or for the internal tremor to increase to visable levels?

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.

Thank You

#16 sarahjo

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Posted 13 June 2013 - 11:29 PM

hey there invisible, I had been having twitches for sometime, then moved into a consistent shaking when it got to the point I was complaining to my fam dr, he sent me to first neuro dr. and that dr. chopped it up as stress and then essential tremors, then at the advice of my husband I started writing down everything, what I was doing when the shaking was happening, and everything I was feeling, it came to be that I was so focused on the tremors that I wasn't seeing the other symptoms, for exp. i would be tiring easier that i had ever tired before then arm started getting heavier, and then was so exhausted and couldn't explain it, i guess what i am saying is tray starting a note book and just write in it everyday, and see if you are missing something, it took me a good 8 years til recently they got it, i think i have had every test they could think of, and then i went to this neuro dr who also specializes in movement diseases, so good luck, its frusterating we know, don't give up also something else is keep moving eventually i was getting stiffer and stiffer, to point couldn't roll over in bed without waking husband to help me, also when i would get up in night to use restroom, i looked like a 90 year old women, and i am 45 so log everything from burning in limbs, to headaches, stiffness, to numbing feeling, tiredness, heaviness in limbs, face, to consentration, speaking to friends loosing words, etc. best of luck, praying you get answer soon, we all know how this waiting period is.

#17 johnnys

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Posted 16 June 2013 - 01:16 PM

I read somewhere a DAT scan diagnosis is not a sure thing.I also read that loss of smell is a very good predictor of the disease,more so than a physical muscle exam.I lost my sense of smell three to four years ago. thre years ago i could not even smell gas.Six years ago i could smell pretty good . probaly started declining five years ago.The disease also does not show physically till 80 % of the brain is affected

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.

#18 sarahjo

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Posted 17 June 2013 - 01:01 PM

my neuro dr. wanted me to do the DAT scan but insurance said no, it was to expensive and not a sure dx. so they weren't gonna put out money, dr. said that he Purdy much had what he needed, but he went with the sinemet trial also. now tomorrow go for sleep study, don't understand why, but they have their reasons. The more I read ppls testamonies of how they r dx. it all boils down to med test. Don't know why some dr. don't just do it first, would be a lot cheaper. But dr.s need money too. lol

#19 Prospector

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Posted 18 June 2013 - 05:02 PM

Hi Judo, I am a new member as well dx in nov 2012. My sense of smell is also rotten. Often I would hand my new baby to my wife and she would say " thanks for giving him to,me with a full diaper!" And I'd say "I swear to god I couldn't smell that!" Truth be told I could usually smell it a little :)
Dx Nov 2012 at 40

Meds: generic sinemet 25/100 x4 a day
Azilect 1 mg x1 a day

#20 Golden01

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Posted 19 June 2013 - 07:57 AM

Welcome aboard, I hope you'll find helpful info and support from others. Here's a blog I read this morning that I thought might be of interest to you: http://parkinsonswom...ur-garden-grow/

Edited by Golden01, 19 June 2013 - 06:17 PM.

Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine; Sister and Best Friend from Childhood also have PD





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