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Sean

Newly diagnosed with Parkinson's and Coping

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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

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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. :)

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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

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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

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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

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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.. 8)

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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

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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

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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!

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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

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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

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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.

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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.

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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

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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

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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

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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

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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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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

Hello OWV,

Thank you very much for your warm welcome and wonderful advice. This is a "club" that brings little joy in membership but, seemingly, has amazing members. I take to heart your wise words and continue on living life and trying to make the most of the good and the not-so-good. I'm doing all I can to not allow PD to steer my course in life and to keep as much control over the disease as I can. I wish you well and look forward to more "conversations" with you in the future.

Take care,

Sean

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Hi Sean, I am in my mid thirties and was diagnosed roughly a year ago (although my DAT-Scan showed that I most likely was dealing with this for 6+ years). Finding the right neurologist is the best, since we are all different. I agree. Even my neuro said that the support groups near me are full of older people, dealing with a different aspect of PD - if you will. We all have different demands in our life stages, therefore it is hard to relate to an older group. There are a good group of people here. Welcome :)

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"I Accept," is, I'm afraid, all the "wisdom" I can offer...

 

You will receive plenty of excellent advice on this forum, so I shall not attempt to share any of my own at this point in the getting to know you process. (Once you do get to know me, no doubt you'll find I'm an opinionated wotzit but, until then, I'll keep the showing of my know-it-all-knickers in abeyance until you get your feet wet, so-to-speak!) Instead, I will share one little trick that has helped me a great deal over the years: I suppose it's akin to the "Serenity Prayer," in that I use this method in all things that are out of my control, or that I may be able to only partly alter, or will likely or definitely change, but I cannot readily see how. I put my hands together in front of my heart, bow my head, and say, "I Accept."

 

Sometimes, it is a lie.

 

Perhaps, to put it more kindly, it is an illusion, for, as sure as God made little green apples, there are times when I neitheraccept things, nor want to! But, that does not matter--at first--because, sooner or later, acceptance comes; it always does. So why not sooner, rather than later, by accepting consciously and with full intent? (Even if it does take affirming it over and over again with tears streaming down your face? Hey, whatever works, right?)

 

My name is Kim, by-the-way, I am 54, live in Georgia, was dx at 45 (I'd been afflicted they estimated, by then, somewhere around ten years). I had DBS surgery three years ago.

 

And now, I accept that I may finally be falling asleep again... Got up at four, but sleep meds are finally doing their stuff, so perhaps I can get enough sleep to face my day in court tomorrow wide awake!

 

Welcome to the group--sorry you are in the club.

Peace Be,

Kim

Edited by KimAgain

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Hey Sean and Sunny and any other Newbies yet to be welcomed into the fold. (into the fold? where did I get that line? Isn't that for sheep?), Whatever,

It is a club here, PD Club. Not for the faint of heart, you got to be to be tough. "Not for Wimps" is a quote I have borrowed before. Too bad it isn't a Jam of the Month Club that we are all in here and we could moan that there were not enough strawberries in last months jar and the marmalade this month was , well, marmalade. My advice is this: Get a good movement disorder Doctor, don't be afraid to suggest what you need to the Doctor because you are the one that knows and observes that best, keep yourself well read up on PD, get yourself into a drug routine that works for you, be as physically active as possible (use it or lose it!) and keep your spirits up. Remember that this "sneak up from behind, backstabbing, drygulching, ambushing, snake in the grass, pain in the ass Parasitic Freeloader" is to be our companion for awhile. We carry him on our shoulder, we drag him clinging to our legs, he spills our coffee, he squeezes our words off, he messes up the thoughts in our once tidy minds, he will push us off balance, freeze us up and make us shake and dip and shimmy in no particular order, and when we try to sleep at night he will tug at your legs. You can't ignore the bugger, but don't let him think he is winning. If the red eyed, lizard skinned, freeloading Parky Monster senses fear or weakness, he becomes more aggressive and hateful. Respect his powers, but show no fear, keep your chin up, and ultimately, all we can do is try our best. Celebrate the days you land on the ladder squares and learn from the days the shake of the dice lands you on a snake one. Don't beat yourself up over things that you can't do as well as you once did and remember that happiness and contentment for our lot in Life has to come from within ourselves. No one can do that for us. And when you get the chance poke the PD Creature in the eye to show him you are Boss.

 

j.b. (as in b for babbling on)

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"I Accept," is, I'm afraid, all the "wisdom" I can offer...

 

You will receive plenty of excellent advice on this forum, so I shall not attempt to share any of my own at this point in the getting to know you process. (Once you do get to know me, no doubt you'll find I'm an opinionated wotzit but, until then, I'll keep the showing of my know-it-all-knickers in abeyance until you get your feet wet, so-to-speak!) Instead, I will share one little trick that has helped me a great deal over the years: I suppose it's akin to the "Serenity Prayer," in that I use this method in all things that are out of my control, or that I may be able to only partly alter, or will likely or definitely change, but I cannot readily see how. I put my hands together in front of my heart, bow my head, and say, "I Accept."

 

Sometimes, it is a lie.

 

Perhaps, to put it more kindly, it is an illusion, for, as sure as God made little green apples, there are times when I neitheraccept things, nor want to! But, that does not matter--at first--because, sooner or later, acceptance comes; it always does. So why not sooner, rather than later, by accepting consciously and with full intent? (Even if it does take affirming it over and over again with tears streaming down your face? Hey, whatever works, right?)

 

My name is Kim, by-the-way, I am 54, live in Georgia, was dx at 45 (I'd been afflicted they estimated, by then, somewhere around ten years). I had DBS surgery three years ago.

 

And now, I accept that I may finally be falling asleep again... Got up at four, but sleep meds are finally doing their stuff, so perhaps I can get enough sleep to face my day in court tomorrow wide awake!

 

Welcome to the group--sorry you are in the club.

Peace Be,

Kim

Good Morning, Kim. Thank you for such a warm and lovely welcome! I admire your philosophy and plan on utilizing it as well. I am amazed by all of you who come here to share and to help each other. I wish I had found the lot of you much earlier in my travels with PD. The way I look at things is this, PD is NOT my friend and he is NOT my enemy. He just IS and will now ALWAYS be my companion in life. I can' shake him, I must accept him, but I will NOT allow him to have control...EVER! I will beat him down through exercise, diet, a healthy mind-set, a faith in God, family, and understanding friends. I have a strong partnership with an excellent physician who treats me with respect and has my best interests in mind regarding our fight with this new companion. I've been on PD meds for quite some time and my physician has always treated me with the idea that PD is what we are fighting...it's just been "officially" diagnosed recently.

I look forward to sharing with all of you and I so appreciate all with whom I have had contact thus far.

Thank you, dear Kim, for reaching out! Your perspective is amazing!

Take care,

Sean

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