I was dx at 29 and now 50. Whilst I appreciate that some people find this site useful, for me I find this site very negative and I think best to avoid. On the rare occasions I come on here people seem to blame every ailment they have on PD. I try to be positive and be around positive people as much as possible. PD will not dictate my life.
Negative: I was dx at 29 and now 50. Whilst... - Cure Parkinson's
Negative
50 Replies
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I'm sorry you feel this way.
I do believe that people feel it is a safe place to share their "negative" feelings (at times some of us get overwhelmed with life) knowing that others will give encouragement, so that they won't be overcome by their negative feelings.
It is easier to receive encouragment from those who understand.
It has also helped me realize how blessed I am, at the moment. My PD doesn't see as bad when I see how much worse others have it, yet remain active and positive.
I have learned a lot from this site and feel the info has been very helpful.
Pelley in reply to
Blessed by what/whom? for what?
Great that it works for you Di. I just prefer not to have PD rammed into me 24/7.
Trixi in reply to
Agreed.
Pete-1 in reply to
I find it is impossible to forget anyway, except perhaps during the odd daydream or real dream during an afternoon nap So it kind of rams itself into me 24/7 and without my permission.
Barry H
Sometimes I feel the way you do and sometimes I find the site helpful. I have been diagnosed with pd for two years, although I'm sure I've had it longer. I have appreciated meeting and hearing from some real veterans about what practical steps they take to not let it dominate their lives. Last week I was in the waiting room with a neurologist. I met a man there who had it for 18 years, was very positive and gave me all kinds of advice on exercise etc. I found him more helpful than the neurologist. I wonder if you have any helpful ideas you can give on how to keep so positive and not let it dominate. I know most of it is attitude but Having it at 29 and now for 21 years you must have developed some ideas on what helps.
Thanks
some times I feel like I can deal with park other times I am just overwhled. I take a nap.
Frank
Thats allowed Frank!
hi
i hav PSP for which there r no mkeds ad no poss ofitLettign up
it is a 24 /7 thing but i trr to be +VE and share things on the site
lol jiLL
in reply to jillannf6
Aww Jill I have just read your symptoms and you really have suffered. Its amazing how you have stayed so positive.
Thanks Barry for saying what I felt about this site. But then again there is nothing fun about pd.
No problem Trixi. I agree there is little fun about PD.
What is PSP?
Initially, I found this site to be a lifeline and I learned a number of helptul things from it. I think it depends on each individual. Some people like to join in activities and talks with people face to face. I find it much easier to share my ups and downs with people I am never likely to meet.
I am a very positive person and have never allowed Parkinsons to rule my life and I think most people share that attitude. We all use the site in the way that helps us most - there when we need it - but we do not need it all the time.
If sites like this were not available, many people would have no access to advice, that is, other than Doctors. I am a great believer that doctors do not know everything. I also believe the person suffering the complaint whatever it may be, can be better informed as to treatments, what problems can be caused etc by other sufferers.
I always am positive, because I have no time for negativity, but often just talking about things although it might sound negative often brings about a positive result.
Helping each other is part of human nature.
I take your points Court and oldtyke.
I know what you are saying, barryH - I found this site about 6 months aftermy dx and it's definitely a roller coaster ride. I found the deepest most practical post and then others that terrified me and some that just plain sent me to the therapist.
Enter at your own risk. It's got just as many facets as the disease.
What's the big deal? Just skip over what you don't want to read, how hard is that? Some of us live in small rural areas and are very isolated and learn from other people's experience and knowledge. Just start a positive blog and you'll probably receive it back but please don't belittle others pain and difficulties. Glad things are going well for you, but others may need a safe place to vent.
Ahmen
Very difficult to remian positive when you can see your father deteriorating in a Care Home becasue there are not any Care Agencies in Suffolk who will care for him in his own home.
in reply to 47claire
Claire, have you tried uk parkinsons society for advice/help?
I think poor BarryH is looking for something, I am not quite sure what!
I have just read what he has to say for himself and to others!
He accuses other sufferers of negativity, then propagates negativity himself and frequents the site, to see what damage he has done.
You are callow, Barry, not everybody is as strong or as arrogant as you, or me, perhaps.
Some people are vulnerable and need reassurance and support; they may not have your social opportunities, to mix with healthy positive people. They may well be surrounded by other forlorn people, of equally poor health.
I bet you're the life and soul of the party.
Schoey [a 70yr old PD Nuisance]
I agree!
What an intelligent man Schoey is!!!!
barryH, for the first 15 yrs after I was dx, I refused to read any articles about pd and would never think of attending a support group. I didn't want to hear or see anything that would upset me. However, now I think this site is a good thing, either to vent or to help another person who is feeling low. If you don't find anything for you here, just don't sign on..........your choice. btw, well said, Schoey! I loved your post!
Hahaha Schoey,
Of course your entitled to your opinions. I dont have to agree with them and I do not regard you as a nuisance!
It's been about a year since I got the official word about PD. I have been on this site for about 2 months, it is like a life line. We all have the same illness, but we are all so different, and I am sure that people with out PD don't understand that. Those are the people we deal with everyday, and it is that enviorement we live in. We can come here and talk, post, and learn from people who really do understand what it is like to be a PWP.
So what if sometimes some one vents a little, better here, in a virtual world than to some one, family, or care giver, that you may regret sooner than later. And who knows maybe someone here has gone through the same emotion and can even help.
Yes wise words olpilot, wise words. Hang in there.
I am totally confused Barry. Your statement is equal to going into a restaurant called the Cheesecake Factory.(specializing in Cheesecake) When your waitress lists the specials...all cheesecake of various kinds...you yell "I hate cheesecake, stop trying to force it down my throat"
Don't go into the restaurant if you don't like whats on the menu.Why are you here?
The only way you can be forced by this site to "have PD rammed at you 24/7....is to visit the site 24/7
Kat00, You are too modest. You claim total confusion, then go on to give a perfectly cogent example that precisely describes Barry’s problem and provides a simple and effective solution. And, as others have intimated, certainly his pencil has an eraser and his computer a delete key!
This site has been so helpful to me. I appreciate it and the people who post every day.
Hi Barry
What I don't understand is if you were diagnosed at such a young age and so long ago, you are only commenting on this site now. Have you only just joined?
You must be doing something right for yourself to still be so positive after such a long time. I keep running but feel Parkinsons is catching up with me. Would be glad for any tips you may have.
Been on here 18 months/ 2 years. Biggest tip I can give you is have DBS but be patient for the first year after. Exercise machines such as cycling, rowing, cross trainer and walking on a treadmill all work against PD. Try reducing Sinemet, at best have no Sinemet at all. I try not to let PD dictate my life. Try to reduce stress levels as much as possible. Have a sports massage once a month to help ease your muscles. Swimming is good too. Try and ensure you get a Neurologist who specialises in PD. Try to think positive all the time. I have had a lot of low points in my life fighting PD but I have refused to give in. But we are all different and what works for me may not work for somebody else. I think we all have one thing in common....not to let PD beat us.
Court in reply to
Have been told I do not need DBS. Can't swim as cannot get feet to stop floating!! I am very positive and try to exercise regularly. I am not on Sinemet but Stalevo and Requip XL. Just out of interest who is your neurologist and where do you go?
Neighbour
Pete-1 in reply to
I'm not quite sure what it means to "not let PD beat us". If PD is our adversary then not letting it win implies that we can oppose PD and cure ourselves. That would be nice.
Hi yes I think but do not really know how you feel as I am not the one with PD my hubby not interested either and just gets on with it but listens to what I learn from the blogs from you all, However as a carer I thinks it great, we are all different but I think its good to share, take care now.
Good luck to your hubby. He will benefit having a caring partner such as you.
Heck if you find this site negative you should try some of the others!!! Frankly this is the most constructive site I have found. I try not to spend too much time in the PD community as for me it gives me an in balance, making me feel my life is all about illness when it is not.
I often get hauled over for being too positive, too upbeat, too happy .... how crazy is that !! I am 10 years in and feel I do amazingly well.... I have heard comments (not on here) before like 'well she's not really suffering yet', and 'wait till it hits her'... I struggle as much as anyone but I don't moan and whine about it, I get on with my life. And its a great one, because I make it that way.
Kindest
C
PS take up drumming, it rocks
in reply to
I think you can never be too positive while dealing with PD. I am not surprised your doing amazingly well, with the positive attitude that you have. I agree with your comments and know it can be a struggle at times, but least you know you have the options (dbs) available to you should you ever need them. I believe there will be a significant breakthrough in our life time.
ps take up tennis, it rejuvenates
I agree with you.
That's a shame as I have just joined and am a very positive person. it's our job to show the others that you can't waste time sitting worrying and talking about worst case scenarios. Muhammad Ali, Yasser Arafat, Salvador Dali, Franco, Adolf Hitler, Pope John Paul, Mao Zedong etc, didn't let Parkinson's keep them down did they? Weird bunch though!!!
Stay and start a cheerleader's group with me.
I dont know about being a cheerleader but I certainly admire your upbeat!
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