Parkinson's Disease Tulip


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Old 10-29-2006, 10:16 AM #1
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Default What would you do different?

I'm one year into my PD reality and was curious, those of you that have been living with PD for some time now, would you do anything different if you could go back to the time of your diagnosis?

I guess I'm looking for advice, I feel like I'm watching my life rapidly slip away, can't play one handed guitar, competitive sports are getting dangerous for me. I'm 31 and ****** about the things a could do a year ago and can't now. And when I try to focus on the things I can do I still get angry. It's like I got off the my train early and it's rushing away.

Robert
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Old 10-29-2006, 12:08 PM #2
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Robert..The first thing I would have done different is get to a Dr sooner, and get a dx..Of course I never imagined that I had pd, but the reason why I say that is for a couple of reasons..First, the symptoms I was experiencing werent going away, and I knew it..In Nov of 03 I decided that if I was going to stay in the fishing business I had to do some major repairs on my 57 year old 47' dragger..So I stripped it down to the bare hull and rebuilt the whole boat, and not only spent all the profit I made from the previous season, but went on to max out 11 credit cards to boot before I was finished..In May of 04 I was dx, and the boat was 3 months away from being finished..I fished half the season, paid some of the the credit cards off..fished the next season and, got out of debt and had to put the boat up for sale this past spring, and I cant even sell the damned thing for a song..Looking back, I was in denial that something like pd couldnt happen to me..Thats about the only thing that I wish I could go back and change..Had I been dx before I started that project, I would have never spent all that time and money..But we live and we learn

I can really relate to what you said about trying to be grateful for what you can do, but you still get angry..Ive been there and it still comes up for review occasionally..Sometime I will be putting my pants on and I put my leg in the wrong side without realizing it, and try to put the other leg in, and then have trouble getting the weak foot out.. ..Ive learned that is a really good idea to do this only while sitting down.. ..I play the drums..kinda now..That is frustrating, and it has been a measuring stick of my coordination

What Ive really had to do is understand that this journey is going to involve alot of loss..But it can also built character, and allow us to grow personally and spiritually..For me this has been a must..It keeps me off the pity pot..and it is something that I can accomplish without physical restraints..It is an avenue to embrace the life I have with all its losses, and ever changing scenery, and become reasonablly content..We really have entered a dimension of life that was obscured by our former healthy way of life..if that makes any sense

As Chasmo puts it.."Its not the beginning of the end..Its the end of the beginning"
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Old 10-29-2006, 02:22 PM #3
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I think this is a great question and I'm hoping more of the "veteran" members of this forum will respond.

I understand what you mean about sports and the guitar, for example. I've played hockey since I was 3, and have played guitar and drums since I was young.

I had to quit playing hockey because I was just so sore and stiff for days after. But now that I feel better on my meds, I've been up on my inline skates with my gloves, stick, and a hockey ball just skating around. I'm also headed back onto the ice this week to see how I feel. My talent level is nowhere near it used to be but I think I have to at least try and play a little more while I can. I love it too much and it's been such a huge part of my life forever. (Thank God for the Center Ice package so I can at least enjoy watching games!)

I also play guitar (I have a 6 and a 12 string) and have been frustrated with holding the pick in my right hand, which is the one most affected right now, and getting the right and left hand to coordinate. But I keep trying and while my playing has definitely deteriorated, in my mind I still sound like Jimmy Page!

Steve said he was a drummer. About a year before being diagnosed, I had a Yamaha electronic drum kit in my house. When I would bring my right hand down to strike the high hat or a cymbal, the drumstick would be gone! I thought I had a grip on it but it kept slipping out of my hand. So I ended up selling the kit. I was afraid I'd poke my eye out! LOL!!

So far, I have no regrets or things I would change but then again, since I was officially diagnosed this past April, I'm still a newbie to all this. But the one piece of advice I received early on, and that I carry with me, is to keep living your life as fully as possible. And if there are things that we have to let go of, don't think of it as a loss but instead as an opportunity to try new things you might otherwise never thought of.

While it's true that many doors will close to us as we move along our journey, many other doors will open. The trick is to recognize that opportunity and walk through those doors. You never know where it will take you, but chances are it's someplace nice. And I'm willing to take that chance...

Todd
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Old 10-29-2006, 06:29 PM #4
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Default to my friend Robert:

i say that you should loose your temper once in while. Yell...curse...say rotten things about God if you must...and do it soon. for too many years, i thought that i had to be the "good" pd patient. people would ask me how i was and i would say i'm great and you? knowing full well that was the response they wanted-that they could give a hoot about how i really felt and could feel good about themselves for at least being involved enough to ask me how i was and then could make a clean get-away w/o any emotional scene or w/o having to face the reality that it could be them instead of me. it scares people when they hear that this disease picks it's prey w/o concern for sex, race, social status, or importance. i waited until i just finally blew top completely at a girlfiriend's tupperware party. i guess that i just got sick to death of somebody saying "boy, you look great-guess you're doing pretty good" once too often. it was as if a damn broke and i began to shout and scream that i really did feel like dog ****
and that it was unfair and to have this happen to me and and i didn't see why i had to be the one who was always brave and cheerful when i felt like crying all the time and i told God how mad i was that i had to deal w/ this and that it was all His fault.i ranted and raged for a whole hour and then just sat there stunned at my outburst but feeling better than i had felt in a year at least.
i think they call this primal scream therapy and believe me it helps to get it out and look at it and deal with it rather than to keep it all bottled up inside just waiting to spew all over. i get sick of being a pollyanna about this disease but after i told everyone just how i felt, it was such a catharsis and i no longer get spoken to in that annoyingly cloying way that people save for idiot savants. i demanded and appartantly recieved a bit of respect and an understanding from my friends w/o pd...and my girlfriend sold the largest order of tupperware in the history of the salesperson!
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Old 10-29-2006, 06:43 PM #5
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Default An old hand

After ten plus years of PD, and many many many more years of living, I think I can call myself a veteran.
I was lucky, I was 58 before I began to suspect that my years of frequent stumbles over the smallest of pebbles and my strange stiffness were more than just clumsiness.
It is totally outrageous when young people get PD - it makes me furious. It just should not happen. My experience is of course not very similar to yours, who are young, but I do have some practical advice.
First of all GO VERY VERY SLOWLY with the medicines, not just sinemet but also the agonists and everything else. If you take too much, too many, too fast you will get worse very quickly, and you will not know if it is the illness or the medicine that is making you feel worse, nor willl you know which medicine is making your symptoms worse.
One of the 'advantages' of being an older PD'er is that I don't expect to feel perfectly chipper anyway. You have all the right in the world to demand a feeling of wellness and health, but PD extinguishes that expectation. I can accept that more easily than the young, so it has been easy for me to go slowly with the medicines. But if you do demand complete, though temporary near perfect movement, you are more likely to try much medicine too fast. DON'T do it.

Second piece of advice: Read all the posts about alternative ways of alleviating symptoms. Exercise, healthy diet, etc. etc.
Become knowledgeable about PD. Fight back with much more than medicine.

I am so sorry you must be here, but you are most sincerely welcome amongst us.

all the best
birte
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Old 10-29-2006, 08:13 PM #6
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My first symptom was noted by my most awesome Internist...loved her...in 1989. Which means that my symptoms pre-dated that by some period of time.
  • I would have paid closer attention to my financial life, especially since I am a single person.
  • I would have "listened" to the 401(k) warnings at work...join, join, join...save, save, save...not just a few dollars at a time, but 15/20% of my gross income. Something I wish I had to fall back upon NOW.
  • I would have paid closer attention to the "advertisements" at work about LTD sooner.
  • I would have stayed as fit as I had been prior to 1987. I stopped exercising for the usual excuse, I don't have time...my work hours don't allow time...etc.

I only became a participant in LTD when I assumed responsibility for a company plan at my last job. Never dawned on me that I would be a beneficiary one day. But, without the LTD, I would never be able to support myself solely on SSDI, which is only 50% of my income today, combining with my LTD benefits.

I can't say much more that that, since I began my research in to "what is this" as soon as my Internist began to become concerned, which did take her a few months of checking me out from time to to time. I began seeing the MDC at USF in Tampa in 1993, and have been with an MDC every since; currently at the Univ of Maryland, Baltimore.

I don't have many regrets about life...couldn't do much about them it I did.
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Old 10-29-2006, 09:08 PM #7
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Default Good Advice.

Hi Robert,

You asked an excellent question and have gotten VERY good advice, all of it. The only thing I would add is to see a good physical therapist ASAP - specifically, one who is familiar with this kind of work. http://www.posturalrestoration.com/index.html

I think that if I had known about this 7 years ago and acted upon it, I would not have PD today. As it is, I only learned of it 3 weeks ago and just began therapy a week ago. I am headed for intense therapy this winter and hope to report good results in due time.

It may not be easy for you to see the connection this early into PD - but I can assure you that in my case it is quite remarkable. What have you got to lose by trying - except maybe PD....

With hope for us all - Ibby
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Old 10-29-2006, 09:48 PM #8
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Default if i was 31 etc

1- start my supplemental regimen immediately
2- get the dietary aspect under control
3- exercise
4- start developing passive income immediately and forget the 401k, no time)
5- learn to dance
6- treat sinemet like it was radioactive
7- take up meditation and tai chi
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 10-29-2006, 10:07 PM #9
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Exercise, exercise, exercise. Stretching to maintain flexibility and better posture, strength work so that any weakness is due only to PD and not to lack of use, and aerobic something so you're fit, have some energy and sleep better.

Try out any suggestions that are inexpensive and easy and more or less sensible. I can't believe what a difference a little bit of magnesium makes to my sleep and thus my life - that came from a suggestion on this forum.

Do whatever it takes, within reason, to have a good night's sleep. For me, it's magnesium, some exercise in the sunshine, and going to bed at the same time every night. (I HATE the change to and from daylight saving time! - like today). Other things including medication help other people.

Good luck!
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Old 10-30-2006, 01:33 AM #10
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Default Robert

Quote:
Originally Posted by rd42 View Post
I'm one year into my PD reality and was curious, those of you that have been living with PD for some time now, would you do anything different if you could go back to the time of your diagnosis?

I guess I'm looking for advice, I feel like I'm watching my life rapidly slip away, can't play one handed guitar, competitive sports are getting dangerous for me. I'm 31 and ****** about the things a could do a year ago and can't now. And when I try to focus on the things I can do I still get angry. It's like I got off the my train early and it's rushing away.

Robert
aka Robbbbeert, Rrrroberttt
Hi Robert,
You have every right to be ****** off, don't let anyone tell you otherwise. The best thing said to me was by an eminent neurologist in the early days of being diagnosed it was "I've no doubt you've shed many tears over this and you have every right."
Anyway I'm pretty well over that now but even now 12 yrs later I distinctly remember the early days as being the hardest.
I was 35 and thought my life was over.
Things I would do differently?
Not take an agonist! Found it made little difference to P.D. symptoms whether I took it or not but my thinking and reasoning went back to normal without it.
Wish I'd started on a little sinemet in order to function better. I left the sinemet for five yrs after diagnosis and should have taken it sooner.
The thing I'll be eternally grateful for and the bottom line Robert is, my life is great now. Two and a half yrs ago I had DBS. I can function well and often now I'll be doing something that it got to the stage pre DBS that I couldn't do or did with a lot of effort and be so thankful for being able to move well again. Sure its not perfect or ideal but like I said I'm eternally grateful to be able to do whatever whenever again.
Hope I haven't bored you too much with my history but there is life after a young onset P.D. diagnosis.
Cheers,
Lee
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