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Diagnosed today


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#1 TNdad

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Posted 29 January 2014 - 07:50 PM

Diagnosis was confirmed today. Not really a surprise, but I'll remember 1/29/2014 as the day I heard the neurologist say I'm sorry but you have Parkinson's. I'm 49 and have probably had this condition for several years. It was the right hand tremor and wobbly right knee that got my attention. My visible motor symptoms have started quickly over the last month or so. I've been reading this forum for the past week and found the posts very helpful. In reality I was hoping I would get some different diagnosis and would move on to some other forum or website. Well, here I am. Registered and everything. Just feel like I need to do something. I haven't started the meds yet. I'm concerned about side effects. Has anybody had experience with the Neupro patch? Thanks.

#2 Rogerstar1

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Posted 29 January 2014 - 08:09 PM

I'm sorry for your bad news, also. But welcome.  What part of Tennessee do you hale from?  I'm a grad of UT at Martin in the northwest corner near Union City.  



#3 metfan31

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Posted 29 January 2014 - 08:11 PM

TNdad, welcome to the group you are in good hands here.  I was Dxd October 2013 and was 33 at the time. I have tried a few PD meds so far. Carbidopa Levodopa (Sinemet) has been the most effective with least complications so far for me.  I have not used Neuro patch.  Hang in there, this is not the end of your life, just an adjustment.



#4 TNdad

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Posted 29 January 2014 - 08:27 PM

Thanks for the welcome. I'm in Knoxville. Lived here for 17 years with my beautiful wife and 3 sons. I look forward to sharing my experiences as they evolve. Still abit bit stunned with the finality of the diagnosis. Looking back over the last few years there were a lot of signs of the disorder, but I didn't get suspicious until this annoying tremor started. I'm a physician and you would think I would've had a clue. This has been a real eye opener for me. My biggest concern is the future impact on my family.

#5 lu states

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Posted 29 January 2014 - 09:21 PM

TNdad:  your  first two sentenses rang true for me as well.  i remember my dr. saying he was sorry, but that i had parkinsons.  personally, it was a relief for me.  a name to put to the strange things happening, and had been happening, for 10 years.  i already 'knew'.   i am sorry you are here, but,  it is a place where you can bring your concerns, rants, strides, and whatever other curiousities you have discovered.  someone,  will have experienced the same symptom.    personally, i am on mirapex, but there are plenty of sinemet users here.  know even less about a ' neuro patch '.   good luck with your meds....if the patch doesn't work, something else will be helpfull.  you will find understanding here, which sometimes is just all you dream of.  best of luck,  lu states
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#6 PapistwithPD

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Posted 29 January 2014 - 10:12 PM

TNdad,

 

Welcome, brother.  I'm new here, too (Dx 1/8/14) and all I can say is so far this forum has been nothing but wonderful and supportive. It's strange how so many of the little symptoms slip by us until we've got the whole picture. Haven't tried the patch yet, but can say I experienced tremendous relief with carbidopa/levodopa, and just transitioned to azilect upon the advice of my MDS.  I hope the experiences of the community on here provides you with some relief as it has with me.  You have my prayers.

 

God Bless,

 

-Papist


Edited by PapistwithPD, 29 January 2014 - 10:13 PM.


#7 TNdad

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Posted 30 January 2014 - 03:59 PM

Thanks all for the replies. You guys are fast. I look forward to sharing experiences. Im putting off starting meds till this weekend so that I can see how I'll respond. Reading the common side effects has me a bit worried. I can't be dozing off or yacking at work. I'll keep posting.

#8 Annikin

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Posted 30 January 2014 - 04:38 PM

Welcome TNDad.

 

Side effects among us vary. I tend to "yack" from the meds so my advice is  "timing is everything". Try new meds the night before the start of your weekend  (let your family know you are trying something new and do not drive until you see how it goes)  so you have time to see how you respond in a private way. A fellow PD friend of mine told me to take a certain med with my dinner  since it was  causing stomach issues and it helped a lot- I also make sure I do not eat heavy meals before going to bed- that way when when I do throw up in the morning, there is little to deal with . Keep a medicine journal so you can discuss with your Dr. what your meds are doing/not doing for you. Remember not to get discouraged as it takes a while to get your meds straight and often you will be on a cocktail of sorts. Some of the meds have to build up in your system so be patient. We all have the tendency to compare ourselves to others questioning if we are normal in the realm of PD. There is no normal and each of us has our own version of the disease and how we deal with it and with which meds- that is the only "normal" so to speak. As a doctor yourself you will likely do what I do as a scientist- over think everything both on a personal as well as a professional level. Took me a year  to stop doing that  and relinguish control and start enjoying my life again.  I hope you can avoid that pitfall. Focus on your family and what makes you happy- use the meds as a means to achieve that.   I wish you the best.



#9 TNdad

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Posted 30 January 2014 - 06:53 PM

Annikin,

Thank you for the insight. Yes, I do tend to over think things. Yes it's true that a lot of docs tend to be control freaks.
I am used to handing out diagnoses like the mail. I'm a pathologist and deal out a lot worse diagnoses than Parkinson's
Until recently I've been observer of disease. Now I'm a participant and it's a real wake up call. Despite being diagnosed with hashimotos, adult onset asthma, Gerd and now with Parkinson's, I still feel blessed compared with the cases of cancer I see every day.

I really appreciate all of the responses. It's very helpful. Thank all of you.

#10 TNdad

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Posted 01 February 2014 - 09:10 AM

I find myself thinking\hoping that maybe somehow I really don't have this. This despite the fact that my motor symptoms are becoming more pronounced each day. How long does it take to except this new reality and move on?? I know everybody is different, but how long were you able to continue your pre PD activities like your job? Is driving an issue? Sorry I'm probably asking for answers that are already posted on this site somewhere. It does help to use this forum. Thanks.

#11 Annikin

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Posted 01 February 2014 - 11:03 AM

I frequently second guess my diagnosis - I think it is part of the denial then bargaining stage of grief. Then I remind myself that I was not only diagnosed by UF Shands but my second opinion came from the Mayo Clinic- I am fortunate to live w/i 2.5 hours of each.I was also accepted readily in the PPMI study after extensive neurological testing and PWD study subject. My doctor told me the sooner I accept the diagnosis the better I can deal with it- but it is a process and I did not come to acceptance quietly as I am by nature a fighter. In the end she was right. I have YOPD and crying, screaming and denying it will not change that- it can however be very cathartic so I highly recommend you get it out of your system early so you can move forward. As for me,  I will deal with it the best I can and I will not let it become who I am. If I stay active and occupied I often forget I have it. I have been living with the diagnosis now for over a year but I have been living with YOPD for at least 10 years. Somethings have changed but for the most part in my case I am still very functional, active and I drive with no issues other than making sure I do not take meds that will affect my ability to do so. I am on minimal meds and very few people know and fewer suspect that anything is wrong. In the end you chose how to react to this diagnosis like any other challenge in life. As they say "life is 10% what happens to you and 90% how you react to it"- or something to that affect. Hope this helps.



#12 lu states

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Posted 01 February 2014 - 11:27 AM

TNdad....the thing that both surprises and " hurts " me, is seeing new people come on here daily, scared and curious.  i had tremors for maybe 10-15 years before it all caught up to the final obvious, " way too many things " stage to finally be diagnosed. i was a waiter, at a place with stairs, and stairs, and more stairs.  i ran up and down and did my job really well for a good 15 years after my " supposed " benign tremor started.  then, at 62,  i was starting to feel too tired, too beat up, so i cut my shifts in half, and took early retirement to fill in the income.  that leaves 25 years of hard work at just my last place, with only a tremor the OBVIOUS sign. at 63, i noticed the gait issue at work, and stuttering at tables.  finally, lost my job at 63 1/2 years old. that was 27 years in the same great place.   you all may not know this, but being a waiter is extremely hard work, and i was at a very famous place that had won many awards, including the james beard award for best restaurant in the US, the " oscar ", if you will.  it is physical, and mental ( those courses don't come to you and every other table in specific, timed phases by magic ), and plain tough, but great if you love the food and wine business.  so, dr., if you look at my numbers, you will see the many, many years i worked after getting my very first symptom.  with meds., you will probably be able to control so very many symptoms as they come up.  you have a great and sharp mind, and are still clicking on all signals.  i am still driving, and drive very well.  i am having trouble now with night driving on the small back roads with poor lighting, then blinding lights from other cars, but my non-pd friends are noticing this.   so, i hope you can except this soon.  grieve, then hopefully you can move on with your life.  i believe if you don't over think it after grieving, you will have so many, many years of great work and activity ahead of you.  my numbers are simply my numbers, but i wanted you to know how the beginning symptoms, and following ones can take years to become problematic.  as a dr., you have great care available to you, and i hope you find it.  the right meds, you will be practicing, driving, leading a very full life for quite awhile yet.  just adjust them as they come.  i wasn't DX until the spring AFTER i lost my job, and for me it was a relief to know i wasn't crazy.  now, i have no business comparing my onset with yours, everybody is different, but i hope you can accept it soon, grieve, then get on with all the great time you have ahead of you, with hopefully managed symptoms.  it is a bummer, but like you said, not cancer !  i post such long ones....hope it is somewhat comforting to see your years and potential still ahead ....because it is there,  just tackle one symptom at a time, as it comes up, and try not to worry about what MAY happen, maybe, maybe not, in the future.  again, sorry i am so long winded and winding all about, can i blame it on pd ?  ha !   best luck to you, vent here, everybody understands, and look for a long career.....why not ?   lu states      p.s.   the odd thing for me, is the one symptom i had forever, and had gotten so much worse, the " tremor ", is one thing that seems to not be as big a problem anymore.  odd !   good luck with that shaky thiing !


Edited by lu states, 01 February 2014 - 11:41 AM.


#13 TNdad

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Posted 01 February 2014 - 11:48 AM

Annikin and Lu states,

Thanks so much for the responses. I hope I'll someday be able to help others from experience. It's tough being a newbie at anything. Thanks for taking the time to post such great and timely responses. I'm in the process getting my wife to sign on to the caregivers forum. I've been reading those posts a lot and find them very inspirational. My personality is better suited as care giver than care receiver. It seems that many of you with a longer history of PD are also caregivers based on your participation in these forums. Thanks..

#14 lu states

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Posted 01 February 2014 - 01:37 PM

a quick thought, it is always easier to be the giver / helper !  accepting is SO HARD !!   i have money issues, and i was always the one grabbing the check, loaning money, giving money, and boy, this side is hard !!   so, i get that.   i have only been diagnosed about 10 months, and i pick up some comforting fact everytime i read on here.  have a great weekend, and let us know how the new meds work !     lu



#15 TNdad

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Posted 02 February 2014 - 09:56 AM

Neupro patch results= nausea/indigestion, hard time sleeping last night. Worse than usual. I sleep with soft ear plugs because I wake easily from any noise. Last night I thought I heard the radio on, took out ear plugs and heard nothing!.. Also saw flashing like someone was turning the lights on and off. The only good thing I found was a decrease in tremor and easier walking. Called my neurologist and will switch to a lower dose for a while. 1mg instead of two. I can put up with lots of things, but I'd rather shake than feel queasy all day and night. Thus the odyssey begins....

#16 lu states

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Posted 02 February 2014 - 12:59 PM

sounds awful !  i have a real disdain for nausea.....it dibilitates me.   as does big pain.   pain i feel i can deal with, nausea i am really stuck.   here's hoping 1/2 dose helps !!



#17 TNdad

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Posted 02 February 2014 - 01:07 PM

Lu states,

Thanks. I can handle lots of stuff. Usually I can mind over matter with lots of things. Nausea is my nemesis. I'd rather be a little unsteady for now. Didn't put a new patch on this morning and already feel the side effects fading. I'm curious if those of you with PD medication experience. Will side effects like nausea go away over time? If so how long and if not then are there other meds that don't cause significant side effects?

#18 lu states

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Posted 02 February 2014 - 01:51 PM

TNdad....boy, you and me both !   nausea just " nails " me !  like i said, pain is awful, but i know when i take a certain pill or two, lie quietly, sooner or later it is bearable.   nausea....ugh !  the worst !  my dr. pointed out that starting sinemet can cause constipation and from his face making and gi tract hand movements, i'm guessing there can be nausea to start.  he promised me that IF this occured, it would fade.  when i pick up my prescription, i will be picking up every pepto-bismol type product i can find !  so, i will let you know 1/ if there is nausea, and 2/ if it disipates as promised.   good luck with your patch.  maybe ask your doc on monday if that symptom is expected to go away ??   lu



#19 christie

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Posted 02 February 2014 - 06:00 PM

Domperidone (a dopamine antagonist which does NOT cross the blood-brain barrier, thus relieving nausea while  not affecting our PD symptoms/ brand names: motilium/ cilroton) works wonders for nausea caused by dopaminergic drugs (levodopa or dopamine agonists) and has no serious side effects. No need to suffer from something that is treatable.


English is not my first language !

#20 lu states

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Posted 02 February 2014 - 06:06 PM

thank you christie !  will write them down and  take with me to my little pharmacy tomorrow !!   lu






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