What PD has given me.

[Sedona]

I always thought I could do it all, work harder, push myself more, some day I would be rewarded. Well, some reward, I got early onset PD in my early 40's. Well, I said it wouldn't affect me (I now realize I was in denial) and I continued to push, working a full time job and a part time home business for the next 10 years. Well, I finally "get" my reward, the one thing that PD has given me is the knowledge that I should not put things off until another day. I am pursuing my dreams as if tomorrow will never come and if I feel that I want to do something, even though my family may consider it crazy, I do it anyways. I have somehow gained a strange right of passage to do what I want, rather than what makes the most sense financially or what is normal. I can no longer do it all, in fact there are days that I can't do much of anything, but I am making a choice to do what makes me happy, I have decided to leave my full time job by the 4th of July, my Independence Day of sorts. I am going to pursue my love of designing and working in fiber arts! I may not make any money, but am hopeful that I can get disability or we may lose the farm. I only hope that I did not wait too long and am able to physically do what I have always dreamed of doing, if only it had been the practical thing to do. I am now trying to convince my kids to follow their passion, not the norm or the almighty dollar. Though the early bird may get the worm, the hard worker does not always get just rewards.The only guarantees in life are that it is seldom fair and always too short, so live it so that when you near the end, you can look back on your life without regrets .

[shall1019]

Well said!

[ccobroussard]

I, like you, thought I could do it all, was diagnosed in my early 40's and continued to be a work achololic (sp?) till my body said I couldn't along with my employer who I had worked for longer than I had Parkinson's. You will be fine, that happened 7 months ago and we are still here. I have been approved for my disability and ssdi (the first time I applied) and we will get my first check in 2 weeks. All our savings is gone and it has been really hard but we made it and without the stress I am feeling some much better. I know now I could never go back to the rat race.

[Sedona in reply to ccobroussard]

Thanks for the support, it's so scary! At first I thought that without my job, my life was over, I was giving up, but it has just gotten so hard I have no choice. I just can't do it, I never make it a full week any more and my neurologist says the stress is making me worse. I keep telling myself that I'm beginning a new chapter and how exciting that I can finally do something that I love. Funny that I have to kind of trick myself into doing what I know is best for me. Just out of curiosity, are you in the U.S.?

[ccobroussard in reply to Sedona]

yes, I am, I live in southwest LA. and I lost my job on Nov. 2nd and had DBS surgery on March 27th and that is really helping but I will still have to be on some pd medicine and I know I won't be able to go back to work. just TOO MUCH and TOO STRESSFUL. But thank God and I don't know how we have been able to make it for 7 months without my salary. I actually brought home more money than my husband because he paid for our health insurance, so losing my paycheck was hard. But it was worse losing my employment, I lived and breathed my job and I loved it. Was never the 1st one to the office because it was so hard to get moving and drive to work in the am. waiting for my meds to kick in but I was the last one to leave at night. It also got to wear some days I would have to go lay down on the couch for 45 mins or so to make the day. That was the hardest thing to adjust to not working.

[cathi]

I am so proud of you guys. These posts are positive, uplifting and inspiring. Living with PD is so difficult. Early on, you encourage yourself to try to live normally. Your individual symptoms at this time might be slight and friends and family are not necessarily aware of your "inner struggle". You are determined. You were taught "mind over matter." You believed. Time passed - for some of us, many years - and for others, just months. And you awakened one day to realize you could not will yourself to stop shakng, or shuffling, or whatever plagues you. This is a very ccritical time. You now know that PD is your reality and it is taking its toll. Now its time to admit you need help. And its okay to ask for it. But do not give up fighting.You will discover inner resources. . You must eat well, exercise regularly, avoid stress, surround yourself with what gives you pleasure. Do not hold on to negative emotions. It is perhaps not fair you think - but know you are not alone. Make a habit of talking about Parkinson's - not for sympathy, but for understanding. You can be blissfully happy. Its up to you.

[PatV in reply to cathi]

good suggestions. I agree

[Sedona in reply to cathi]

You are correct, it's time to put me first for a change and to take care of me by eating healthy, drinking liquids other than coffee, exercising to try and maintain what is left of my flexibility and strength. I pulled a muscle in my neck the other night just trying to sit up in bed to get up to pee. It sounds so silly of me as I write this, that I can't even get out of my bed without rolling off the side and falling onto the floor and then pulling myself up with the side of the bed, yet I feel guilty about leaving my job. Thinking positive is key and do not feel sorry for yourself, again often easier said than done. After 10 years with this disease, I still find it hard to say to someone that I have Parkinson's disease, without crying, but I'm getting better at it.

[Hidden]

I wish you all the best in your ventures

[cuchemuche]

I am 48 and I found out 4 years ago that I have PD. Our stories are similar and I left work about 2 years ago. I still deny my PD I know at times, but leaving the "rat race" was the best choice. I now work in my yard and enjoy life without stress ( well almost stress free). My husband is in Afganistan (military) and I'm raising a 15 year old daughter. I had gotten to the point I couldn't make a full week at work and they stood by me until it was just senseless. I packed up my stuff and it took me a while to take it to storage. I mourned the loss and now am happy and moving as much as possible. I find I'm more in tune to the world and I am preparing to make as many things easier for me later as I can. I love life and I'm going to "shake" every last crumb out of it. PD has some very cruel things about it, but it is also funny (symptom wise). We laugh a lot to keep from crying. ENJOY LIFE! Love to you all, your comments helped me not feel so alone in this. Family support is key, but you have to have it to truly understand. I'm a first time blogger! yea!

[PatV in reply to cuchemuche]

omg parent of a teenager--you get the prize. yes, enjoy. and be happy you can be there. i was too busy working and wasn't there (yes, they want you there even if they act like they don't)

[Sedona in reply to cuchemuche]

Thanks for sharing your story, it's nice to know that there is life and good times ahead when I leave my job. If I was leaving simply to pursue my dream, even without the pd, it would still be both exciting and scary, so maybe my insecurity about leaving has nothing to do with pd. I have purchased inspirational wall decals to hang on the walls in my studio to remind me to be positive... "Have hope, be strong, laugh loud & play hard. Live in the moment, smile often, dream big, remember you are loved and never, ever give up." And one from my favorite song..."I hope you dance".

[Voller in reply to Sedona]

Hi

Just read all of these posts and feel inspired emotional happy sad encouraged

Thank you

[fishinggirl]

Great attitudes, folks! I try to have the same attitude but after 6 years my body is beginning to let me down and it gets harder and harder to stay positive. I try when others are around but I am so tired lately that I just sometimes can't. I know that's ok to feel like crap but I find myself just staying home more and more. But I still set goals for each day and don't sit and feel sorry for myself. Your entries that I just read have given me some "get-up-and-go" so I had better get moving. Thanks

[dottie]

Hi, love your attitude. We all have a choice.

The minute you are diagnosed as having Parkinson's you are considered disabled.

You should receive disability money in arrears, they went back over a year for me. Parkinson's is almost a shoo-in.

I am a graphic designer and I am running a small but profitable business. When you work 30 years in a corporate environment, it's disorienting to "retire". But I am loving it. "Accomodate the disease but don't give in to it." This quote is in a book somewhere.

Good luck. You should get disability before you know it!

PS. U2 and Pearl Jam are a great distraction. I went to all six U2 concerts in 2005! And I think Pearl Jam is touring now.

[Sedona in reply to dottie]

Ooh, I like that one..."Accommodate the disease, but don't give in to it"! Makes me think of it kind of like an alien (which in all honesty is what I feel like sometimes, my mind is there, but this "thing" has taken over my body.) So by recognizing it, I am accepting it, but don't give it power by feeding it with negativity. If it controls you as opposed to you controlling it, it has won.

[FergusonJR in reply to dottie]

Dottie —-is that true we are considered disabled the first year of dx with PD. I had not heard that. Is it true?!

[PatV]

In addition to above, I have received several 'gifts' from PD.

One is I must be more mindful, otherwise I hurt myself, and thanks to dystonia, pain is not fun!

I have learned after a lifetime of being chronically tardy how to be on time. I start getting ready long before any trip and heaven forbid I forget my meds or my cell phone!

I have the gift of apathy sometimes mistaken for serenity. All these things I wanted to do and HAD to do I don't care if I do or not. Just happy to get thru the day.

72 now retired from NYC Transit at 67 diagnosed at 64.

[rory3028]

I, too, was stricken with PD in my 40's, although I wasn't diagnosed until I was 53 because my symptoms were thought to have come from an auto accident and a true diagnosis was therefore delayed. I am now 73 and it has me in its grip, but I will never give up. I have had to come to terms with the fact that I cannot do everything, and that is terribly disheartening, after I grieve for my lost ability in any particular area, I pick myself up and go back to doing what I can do. This isn't always easy to do, and I won't tell you that I've never spent a week all alone and in tears, raging in anger that this is happening to me, but you must get a grip on it if you want to survive, and I want to survive. I try singing or dancing, either alone or with one of my children, and by golly it works. It really does. It also helps with motion and gait problems. I wish you the best, and you are not alone in your feelings.

[GrammyC]

These comments really helped me today. Thanks everyone for writing! Leaving my job after 25 years was so difficult, but necessary. Life is now at a much slower pace...literally on days when my feet insist on sticking to the floor!

[ramondo4 in reply to GrammyC]

Wear leather shoes . God luck.

[mymom]

I reveived a lot from reading every comment. my mom had PD, diagnosed in hrr 70's. I wish all of us in the family could have had this resource to point het to. She was a brave lady but I eish she would/could have opened up to us about what she wemt through, how she felt. Maybe I could have encouraged her more in that regard. She could be very private and perhaps fot her that worked. i am more and more a big believer in doing all wr can to syep out and be different in order to reduce stress. i hope not to have inherited PD from Mom.

[mymom]

sorry for misspellings above. writing from small phone keyboard.

[Balderdash]

I call PD my unwantedfriend.I am the same person with PD that I was yesterday, but knowing changes us. Fear from within yourself and changed perceptions all around us and we become lost catapulted toward the inevitability of disability we become the illness.

’The torture of living in two worlds,those windows of normality are the gift of medication,disability the reminder there is no cure.

10 years ago.I cried I would never be able to paint my toe nails.I laughed I had never painted them .Now I do because I can. Ive got Pd it hasnt got me

[salon]

thank you for this post . i have denied parkinsons existince in my life for so long that i forget it until i cant walk to my car after work without dragging the toe out of my shoe or go to other rooms at work without each step being so much effort that i feel like crying. i just cant seem to admit that it is time to stop working my profession and pursue my passion and bring life to mollys collies. i am so afraid to admit i can no longer do my job . i have always been a good contributer.but your post gives my hope that i can do it . thank you

[Balderdash]

A song springs to mind,I havnt heard it for a long time but its just popped in to my head.Sinartra,

My Way.

''Regrets, I've had a few

But then again, too few to mention

I did what I had to do and saw it through without exemption

I planned each charted course, each careful step along the byway

And more, much more than this I did it my way.

Value what you do,smile and congratulate you.

I dont work but I work hard everyday and on a bad day I work harder,even if I do lesss. Attitude makes a difference,xxx The smallest step the hardest step reward yourself you deserve it... x

[oldskool49]

I fully agree and after reading this it hit home.

[maidar]

Thank you!

One day at a time is all we have to do!!!

I receive positive vibes from all of you!

We are in the same boat!

GOD BLESS YOU ALL!

[Lolitalola]

I don't want to live forever but I want

To live while Iam alive.

Live, life like it was your last day

On earth.

Laugh at life it could be worse.

[Sedona]

Things could always be worse and there are always people far less fortunate than I. When I get depressed or start feeling sorry for myself, I remind myself of this.

It's a new day, remember to.....count your blessings, pursue your dreams, enjoy the moment, dare to succeed, learn from your failures, never settle for less. Give more then you receive, inspire kindness, practice understanding, never judge. Always look forward, never back, take responsibility, have no regrets.Take care of your body, expand your mind, cherish your loved ones, laugh often, have fun and take a moment to just dance.

[ddmagee1]

Words of wisdom, that ring very true! May the odds be ever in your favor!