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Newly diagnosed with Parkinson's and Coping


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#1 Sean

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Posted 27 March 2013 - 04:40 PM

Hello,
I'm Sean and I will be forty years of age this year. I began having "minor" outward symptoms of YOPD at age 25 and, through the use of a DatScan, my diagnosis was confirmed on Friday, March 15, oh the Ides of March, of this year...just in time for St. Patrick's Day...Slainte!
I've searched high and low for a group such as this where information and frustrations are shared and accepted. I hope I've found the place. I did try a support group, but, God forgive me for saying it, I was thrown for a loop with the thought that this is me in a few years, if I should live so long.
I hope I can learn from you and that maybe I can add a thing or two to the conversation.

Sean

#2 Beau's Mom

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Posted 27 March 2013 - 04:52 PM

Welcome. Sean. We are at various points in progression, so at least one someone and probably several will be dealing with what you are dealing with right now. There is a tremendous amount of experience, strength and hope on this forum. Feel free to avail yourself of it, and to ask any questions or offer any comments you might have. :)
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 Island Woman

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Posted 27 March 2013 - 05:00 PM

Sean, welcome...you'll meet a great group of people here with a wealth of information and kind words to share. I know what you mean about the support group...some are very good and helpful and others will just drag you down. Remember there's always someone here to help plus you may get a few laughs.

Patricia

#4 Sean

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Posted 27 March 2013 - 05:06 PM

Thank you, Diane and Patricia, for your warm, and speedy, welcome!

Sean

#5 Drummergirl

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Posted 27 March 2013 - 05:32 PM

Welcome and sorry at the same time Sean.
The next few months your mind will be in a whirlwind trying to educate yourself with the disease expectations, meds and how it varies from person to person. Attending a support group was not for me and still isn't. Im sure that time will come, just not then or now.
You'll find this group to be welcoming, very informative and supportive.
Take care,
Karen
Karen

Dx in 95' at 35- Normal MRI, Abnormal Da t Scan- Resting tremor- right foot, leg tremors. RX- 25/100 Carb/ l =600 mg,
0.5 Azilect 1 daily Comtan 200mg 2 day, 0.5 mg Clonazepam 1 daily.

#6 Mihai

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Posted 27 March 2013 - 07:24 PM

Hi Sean,

Welcome to the "club"! We're glad you are here. I was diagnosed at age 33 (11 years ago). I'm 44 now. I am still doing great. I still work full-time, drive, etc... The medication is a lifeline (without it I am a disabled mess), so the best advice is to get with a good neurologist or MDS. Get the right meds when it's time to look that direction (if you haven't already). YOPD is usually different in progression that the later-diagnosed type (slower); however, everyone is different. I had very little problem for the first few years after diagnosis. The disease has progressed more in the past 3-4 years, but is still very manageable via medication. My best advice...keep adapting as PD takes more from you. Find new ways to do old things. And laugh alot. This forum is exactly what you are seeking! I have learned much here...great support and encouragement. Come back often. We understand what you are going through and are here to help as we can.

Peace and blessings,
Mihai (Michael)

Edited by Mihai, 27 March 2013 - 07:28 PM.

Diagnosed in 2001 at 33 years of age

#7 Sunnydaydreameer

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Posted 27 March 2013 - 07:46 PM

Hiya and welcome..

Im 39 years old, been having symptoms since my early 20's but just put them off to partying too hard.. Started to see a Dr. in my early 20's and she told me I had RA, depression, and anxiety issues so I just chalked it up to that.. Well about 3 years ago, I started to see another Dr, It took probably 15 visit to him for him to figure out, HEY THERE IS SOMETHING REALLY WRONG WITH HER for him to referred me to a Neurologist.... I was just diagnosed in June of last year..
Its so hard..anywhere from finding the right meds to thinking about disability.. Its a messed up road to go down..
People have been real nice in this forum, so you found the right place.. :cool:

#8 Sean

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Posted 28 March 2013 - 10:10 AM

Welcome and sorry at the same time Sean.
The next few months your mind will be in a whirlwind trying to educate yourself with the disease expectations, meds and how it varies from person to person. Attending a support group was not for me and still isn't. Im sure that time will come, just not then or now.
You'll find this group to be welcoming, very informative and supportive.
Take care,
Karen

Hello Karen,
Karen is one of my most favourite names and I thank you for your warm welcome to this group. You are right on concerning the whirlwind! But, it's good to know what I'm up against and now know how to fight it. It's just coping with the thought of now always having this multi-headed monster and what to do to at least try to tame it! I'm not one for self-pity and, at heart, am a ridiculous optimist so, if I can share this outlook with others, well, then I hope this will open the gates of membership with all of you.
Take care,
Sean

#9 Sean

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Posted 28 March 2013 - 10:13 AM

Hi Sean,

Welcome to the "club"! We're glad you are here. I was diagnosed at age 33 (11 years ago). I'm 44 now. I am still doing great. I still work full-time, drive, etc... The medication is a lifeline (without it I am a disabled mess), so the best advice is to get with a good neurologist or MDS. Get the right meds when it's time to look that direction (if you haven't already). YOPD is usually different in progression that the later-diagnosed type (slower); however, everyone is different. I had very little problem for the first few years after diagnosis. The disease has progressed more in the past 3-4 years, but is still very manageable via medication. My best advice...keep adapting as PD takes more from you. Find new ways to do old things. And laugh alot. This forum is exactly what you are seeking! I have learned much here...great support and encouragement. Come back often. We understand what you are going through and are here to help as we can.

Peace and blessings,
Mihai (Michael)

Hello Michael,
Thank you very much for your most warm welcome here. I believe I may have met my match when it comes to an optimistic outlook on life and in dealing with our "friend", our now constant companion. You may be hearing from me in the coming days when my optimism needs a good kicker.
Take care,
Sean

#10 Vanillab1027

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Posted 28 March 2013 - 03:07 PM

Welcome Sean!

You've come to the right place. I am 47 and diagnosed last April after several years of unexplained symptoms. This place has a lot of good people and information and I have learned a lot here. I'm sure you will too.

The best advice I've received about PD came from my MDS. He told me two things...

1. Become an expert on your PD. Know your body and as much as you can about the disease so that you can accurately describe your symptoms and evaluate your response to treatments.
2. Exercise, exercise, exercise. Walk, run, swim, dance, martial arts, yoga...doesn't matter what you do but that you do it and do it regularly (min 30 mins a day).

Again, welcome!

#11 Sean

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Posted 28 March 2013 - 03:37 PM

Hello Sunny and thank you for your warm welcome! It is so frustrating to know that something isn't quite right with your body but no one, physicians included, knows what's wrong nor how to make you "better" or "normal" again. It's funny, when I returned home with the diagnosis, I told my wife that I was enjoying a bit of a sense of relief now that we know what we're up against.
Thanks again and I'll look forward to more conversations with you.
Sean

#12 Sean

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Posted 28 March 2013 - 03:39 PM

Welcome Sean!

You've come to the right place. I am 47 and diagnosed last April after several years of unexplained symptoms. This place has a lot of good people and information and I have learned a lot here. I'm sure you will too.

The best advice I've received about PD came from my MDS. He told me two things...

1. Become an expert on your PD. Know your body and as much as you can about the disease so that you can accurately describe your symptoms and evaluate your response to treatments.
2. Exercise, exercise, exercise. Walk, run, swim, dance, martial arts, yoga...doesn't matter what you do but that you do it and do it regularly (min 30 mins a day).

Again, welcome!

Thank you so much for your warm welcome and your important, and well received, advice. I've always been physically active and was happy to learn of the importance of exercise to ward off the inevitable!
Sean

#13 Luthersfaith

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Posted 28 March 2013 - 03:40 PM

I did try a support group, but, God forgive me for saying it, I was thrown for a loop with the thought that this is me in a few years, if I should live so long.


LOL...LLLOOOLLL falling off of my chair... boom. Its easier to move on all fours anyhow.

Welcome to the land of OZ, I mean of PD blog. All shapes and sizes here, no one size fits all.

Just follow the Yellow Brick Road (paved with meds) and you will see who the wizard really is !

We're off to see the wizard, the wonderful wizard of PD blog.
"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)

#14 christie

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Posted 28 March 2013 - 04:38 PM

welcome Sean! I am sorry your have this shitty disease, but i am happy you joined our group: this great bunch of slow, tired and often grumpy folks, who only rarely-if ever-argue and always have nice, warm,supporting and encouraging stuff to say to each other. (the recent thread "suggestion" excluded! LOL). Believe me, you are going to love this forum.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#15 Sean

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Posted 28 March 2013 - 04:40 PM

LOL...LLLOOOLLL falling off of my chair... boom. Its easier to move on all fours anyhow.

Welcome to the land of OZ, I mean of PD blog. All shapes and sizes here, no one size fits all.

Just follow the Yellow Brick Road (paved with meds) and you will see who the wizard really is !

We're off to see the wizard, the wonderful wizard of PD blog.

Hello Luther...sorry about the chair! Thank you for you kind and warm welcome. I appreciate your Wizard of Oz analogy but I'm not sure which of the characters is most relatable to me. I believe I have a heart and a brain so I guess that leaves it me to ask for courage...oh, the noive! I have a feeling that I will meet many courageous "Lions and Lionesses" here.

Sean

#16 Sean

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Posted 28 March 2013 - 04:44 PM

welcome Sean! I am sorry your have this shitty disease, but i am happy you joined our group: this great bunch of slow, tired and often grumpy folks, who only rarely-if ever-argue and always have nice, warm,supporting and encouraging stuff to say to each other. (the recent thread "suggestion" excluded! LOL). Believe me, you are going to love this forum.

Thank you, Christie, for your warm welcome! You seem very knowledgeable about this shitty disease and I look forward to learning from you. I only hope that I can contribute as well.
Take care,
Sean

#17 Mihai

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Posted 29 March 2013 - 07:31 AM

Hey Sean,

I think you are already contributing to this group. Hope you stick around. I've found no better place for support and encouragement than right here... It's good. I think you were right on when you said you felt relief after receiving the diagnosis. While hearing that you have PD is not the thing anyone really wants to hear, the fact remains that once you know, you can ask: "now what?" It's better to know what you have and that there are a plethora of good treatment options available that will assist for literally years, than to know that you have something for which few, if any, treatment options exist. As others have said, nothing is "equal" among people with this disease. But, as always, your attitude, education, and offensive with regard to it will determine much. Love your wife for the support she provides...I would be a sad case without mine. Keep living, laughing, and loving. There is reason for the madness, and in time, you may be able to discover what that reason is!

Peace and hugs,

Mihai (Michael)

Edited by Mihai, 29 March 2013 - 02:44 PM.

Diagnosed in 2001 at 33 years of age

#18 OneWingedVictory

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Posted 29 March 2013 - 12:11 PM

Hello Sean

I echo the comments made by everyone else: PD is a nasty business, presents differently in everyone, can vary day by day, and at times is dispiriting. BUT, and this is a big thing, having a community of fellow travelers and concerned experts with whom to vent, share experiences, compare notes, ask questions (about anything!), and learn is wonderful support and this website certainly provides all of that.

I have found, in the nearly 4 years of dealing with PD, working full-time in a very high stress, demanding job, that you need to be kind to yourself, unapologetically take the time you need each day and each week to do what makes you feel better (whether it be exercise, meditation, socializing, creating, gardening, hanging out with the dog, or anything else you enjoy), and not permit yourself to feel any less than your most whole self if you find you need to ask others for help from time to time. Cherish your wife, look for joy in every day, maintain resilience (not easy for attorneys -- we are among the LEAST resilient occupations!), and educate yourself about PD. And come here often.

Best to you, Sean, and welcome.

OWV
The One Winged Victory of Samothrace is a metaphor for our struggles, despite the odds, to keep steady and accept grace in the face of punishing adversity.

#19 Golden01

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Posted 30 March 2013 - 11:00 AM

OneWingedVictory - Wonderful words! Thank you for sharing.

#20 Wondermom

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Posted 31 March 2013 - 12:09 PM

Hi Sean. I'm 49. Well, 50 in a month. Was dx'd at 42. My mom was dx'd 12 yrs ago. My 48 yr old sister 2+ yrs ago. I'm the worst of the three of us. I had DBS a month ago and for the first time in 2 yrs feel fantastic. I did really well until about a year ago then things went to hell. I believe it was attitude, diet and exercise that have me so many years until DBS. Now I eat organic, local, gluten free. I exercise 4-5 times a week. Weight lifting and cardio. I work full time. I own my own business. My kids are 12 and 15 so I always felt that I didn't have a choice but to keep going. In fact until I had the DBS many people had no idea I had PD. Yeah, it sucks. And I don't know what the future brings, but does anyone?
Hang in there.




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