Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

Newly diagnosed with Parkinson's and Coping


  • Please log in to reply
33 replies to this topic

#21 Sean

Sean

    Advanced Member

  • Members
  • PipPipPip
  • 71 posts
  • LocationNE US

Posted 01 April 2013 - 04:36 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

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

#22 Kristakj78

Kristakj78

    Advanced Member

  • Members
  • PipPipPip
  • 148 posts
  • LocationAllentown, PA

Posted 01 April 2013 - 06:57 PM

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 :)

#23 KimAgain

KimAgain

    Advanced Member

  • Members
  • PipPipPip
  • 352 posts
  • LocationGeorgia

Posted 02 April 2013 - 04:15 AM

"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, 02 April 2013 - 04:17 AM.


#24 jb49

jb49

    jb49

  • Members
  • PipPipPip
  • 1,921 posts
  • LocationOntario

Posted 02 April 2013 - 09:31 AM

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)
Don't be hard on yourself, try your best and be strong!

#25 Sean

Sean

    Advanced Member

  • Members
  • PipPipPip
  • 71 posts
  • LocationNE US

Posted 02 April 2013 - 09:59 AM

"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

#26 Sean

Sean

    Advanced Member

  • Members
  • PipPipPip
  • 71 posts
  • LocationNE US

Posted 02 April 2013 - 10:37 AM

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)

Hello, J.B., and thank you for your warm welcome! I agree with your assessment of our "companion" and have placed most of your suggestions into action and will hope to utilize them all very soon. I do agree that our outlook and attitude are very important in our battle with this monster. I'm determined to keep my life on the same path as before...at least as much as possible. I'm very fortunate to have a very understanding employer who allows me to schedule my work so as to best utilize my worth to the firm. So, I work from my home twice a week whenever possible and whenever needed. This allows me to rest when needed so that I can be as effective as I can. I'm extremely grateful for her willingness to partner with me in this fight.
I come here hoping to find solace and, I hope, to offer the same to anyone who asks or who has no issue if I offer uninvited but with good intent. My heart, I believe, is in the right place! But I will butt out, if asked.
I do tend to carry on about, if you know what I mean, and yammering is one of my better qualities so, forgive me in advance, for that!
Thanks, again, J.B., for reaching out and sharing with me. I hope I can be of help to you, as well.
Take care,
Sean

#27 Island Woman

Island Woman

    Advanced Member

  • Members
  • PipPipPip
  • 272 posts
  • LocationNewport RI

Posted 02 April 2013 - 01:39 PM

jb, well put....many good thoughts as we travel this road...the snow will melt, daff. pop up and the shap will flow as we celebrate another new day and maybe share a kind word with a friend.

Patricia

#28 ftfixr

ftfixr

    Newbie

  • Members
  • Pip
  • 4 posts
  • LocationArizona

Posted 17 April 2013 - 06:14 PM

I was diagnosed yesterday. Had a pity party for a day. Over it now and determined not to let this define me. My biggest regret is that I wish my wife didn't have to go thru this.
Robert E Kuvent, RPh, DPM

#29 Island Woman

Island Woman

    Advanced Member

  • Members
  • PipPipPip
  • 272 posts
  • LocationNewport RI

Posted 17 April 2013 - 07:35 PM

Yes we all wish our love ones don't have to go through this but they can be our best support team...just give them an extra hug.

Patricia

#30 Joe64Jones

Joe64Jones

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 30 April 2013 - 06:49 AM

Hi, Sean.

I will be 49 this year and diagnosed on 4/22/13. I went to the doctor because I had a tremmor in my right hand that wouldn't stop, and it all went down hill from there. My wife and I have been trying to find a support group in the area, but there are none that meet after work hours. I am still working and hope to continue to work for at least 6 more years so I can take advantage of early retirement. I'm not sure how that will work out though, I'm already having a hard time with driving, typing, sitting at my desk all day and sitting still in 2 hour meetings.

I just found this site today and hope to gain wisdom and insight through others. Who knows, I might be able to offer some myself someday.

Joe J.

#31 Sean

Sean

    Advanced Member

  • Members
  • PipPipPip
  • 71 posts
  • LocationNE US

Posted 30 April 2013 - 08:08 AM

Hi, Sean.

I will be 49 this year and diagnosed on 4/22/13. I went to the doctor because I had a tremmor in my right hand that wouldn't stop, and it all went down hill from there. My wife and I have been trying to find a support group in the area, but there are none that meet after work hours. I am still working and hope to continue to work for at least 6 more years so I can take advantage of early retirement. I'm not sure how that will work out though, I'm already having a hard time with driving, typing, sitting at my desk all day and sitting still in 2 hour meetings.

I just found this site today and hope to gain wisdom and insight through others. Who knows, I might be able to offer some myself someday.

Joe J.

So sorry to see you here, Joe. However, it is a blessing to find others in our same boat. I'll keep you in my thoughts and prayers as you learn to battle this "monster" each day. Come here often and don't be afraid to jump right in.
Take care,
Sean

#32 christie

christie

    Advanced Member

  • Members
  • PipPipPip
  • 463 posts

Posted 30 April 2013 - 09:03 AM

Welcome Joe ! Yeah, work and PD don't match so good, but we've got to keep walking...Ok, shuffling, waddling, whatever keeps us moving, LOL! This crappy disease (used to call it shitty but changed my mind...haha) makes us feel like we are 80 year olds or something...Makes us want to retire, stay home, sit by the fireplace and read stories to our grandchildren...that's kind of a problem especially if you are:

...37 years old, like me, and still trying to have your own kids. I mean where are those grandchildren when you need them ? I could always sit by the fireplace and read stories to my cat...Only my fireplace is not working, and i don't have a cat...but, that's another story, LOL....

...Or 49, like you Joe...

...or younger than 65-70 years old, anyway....

I so hope i had a real answer to your worries. Still searching for answers to mine. i suppose there is no easy way out of this mess. Just try make the best out of each day and remember there are much worse things than PD.

Since you are newly diagnosed, remember it might take some time to optimize your meds, and therefore get the most benefit out of them...
English is not my first language !

#33 Vanillab1027

Vanillab1027

    Advanced Member

  • Members
  • PipPipPip
  • 166 posts
  • LocationJacksonville, FL

Posted 30 April 2013 - 09:11 AM

Welcome, Joe! I was diagnosed a year ago today, at the age of 46. At that time I was having significant trouble walking, driving, and using my hands for daily tasks like cutting my own meat at dinner. A year later, after finding the right medication levels and combination, I have a lot of my life back that I thought might be gone forever. Coming to terms with diagnosis and learning to deal with this diagnosis is a process, and this is a good place to find support and information to make the journey a little easier.

I hope we can help you as much as everyone here has helped me.

#34 Joe64Jones

Joe64Jones

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 06 May 2013 - 09:54 AM

HI everyone, thanks for the encouragement. In two weeks I start a full dose of rasagiline, right now I am on a half dose. My neurologist said that I won't notice a difference until then. I'm just hoping a see a difference at this pont.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users