No spots today, apart from one on my face which has tele-ported me back to a time when I was teenager (although I was never really too spotty) thankfully now the 'monster' is concealed under a blanket of antiseptic cream... anyhow I digress, and move onto the tricky subject of advice.
As human beings we love being helpful, love passing forward knowledge and information, love having the answers. However when is it OK to give advice, well when you are an 'expert' I guess. And when would that be? Hmmmm well after you have demonstrated competence?? or have proven experience. Nice light topic for an in between day (Xmas and New Year)
The overriding factor for me is this, what if something negative should arise from something I said specifically, in goodwill and in guidance, I would be devastated. Well yes we are all big enough and brave enough to hold our hands up when we make a mistake. But I don't like making mistakes for other people. When I do it to me thats OK thats 'learning'.
So no I am not going to say this is too much and that is too little. Nor can I say anything else in regards to medication, symptoms, future projections etc. Whilst this site remains totally awesome (compared to the rest) playing Doctor, Consultant, Nurse, Councilor I suspect is not what its all about. Nor should it be. Support, encouragement, sharing it definitely is.
Sorry if I seem a bit of a stick in the mud, but safety and health is my overriding concern.
Well said, H-H. All we can do as individuals is present our own experience and let people take what they want to from it.
It is obvious from reading all the posts that PD is not a predictable condition - each person has a unique experience. So it behoves us not to present our own case as a definitive answer.
I agree. Things that work for some people don't work for others. But, it is good to read other peoples perspectives because it makes me feel like less of a freak.
I usually try to limit myself to "I statements" so that I can share my perspectives and experiences without giving advice or making categorical pronouncements. But a few days ago I entered a discussion about a depressed person who can't get started exercising, and I gave some direct (possibly rude) advice: do it. I regretted my tone a little bit.
The fact that PD affects us in such a bewildering variety of ways makes it harder for us to get the help from our doctors and our peers. But I think there are a few guidelines that apply to all of us:
1) Find a way to increase positivity. For me that starts with GRATITUDE for the many good things in my life. That does not mean you have to be a Pollyanna or a saint all day land.
2) Cultivate the ability to live in the moment. Ruminating about the future is a bad habit for someone with a degenerative disease. Tomorrow I could get hit by a bus. Or a cure for PD could be announced. With my luck, both on the same day!
3) Develop an appropriate exercise routine. THere are so many PD specific approaches (BIG, David Zid) and physcal therapy exercises, not to mention yoga, Qi Gong, Tai Chi, Pilates, and just plain walking.
4) Be informed. I don't really read everything on PD that comes my way, and I tend to ignore the research on future cures, but I benefit from knowing a little about the disease, the meds, the non-motor symptoms, and so on.
That's for starters. But I gotta go.
Best wishes to all, I do feel in community when I write in this forum.
I really enjoy the posts on this site, I check in on a daily basis. Of course I can only speak for myself, but I really appreciate all the opinions,advice and good humour that is generously shared. I really hope that
Ah the tremor won there, premature-post ! don't you hate that ! Anway, I meant to say, I hope everyone can take something from here, all advice may not apply to everyone, but if it improves life for one of us, then thats a result....personally I am interested in the benefits & effects of meds...but I do enjoy sharing things with you all, so lets keep positive & lets keep comparing..Lets all have a good 2012..Many thanks for the posts
I agree with the content of these posts. I would never attempt to give advice to another person - with the possible exception of exercise, which I really do believe is important. All any of us can do is say how we feel and how PD affects us as individuals. I find reading comments on this site helpful and important. I do not feel so isolated. I apologise if any of my comments have done otherwise. Best wishes for 2012.
this site is the best......having PD sucks at times but now I know that I am not the only one. A positive attitude is an absolute must. Approaching 6 yrs since being diagnosed and grateful for slow progression......do use a cane when I am out in public, but able to maintain my home, continue to drive.....just need to remember that I do have to pace myself & not overdo,,,,,Requip XL & sinemet keep me moving. Gail
I just joined the site, and I can answer from my own experience, as PD is one of those personalised movement disorders. Some things are what I also experience, which is great to know there are others out there. There are many questions and also a real sense of a positive group that share, inquire and support. What a wonderful start to 2012! Thank you all, and if I ever over step the boundaries please consult or advise me.
I enjoy this site very much. I don't take what others say as advise. I feel informed, finally. I take what I read/hear, combine it with information I have, talk with my Dr., pray and then decide what I should do.
Henderson-Heywood, thank you for the reminder that we are all different and our disease effects us all differently.
I am so glad I found this site. Even tho I don't have PD, my husband does and I need to find out as much as I can about it. I don't consider anything that I've read, advice, just personal experiences. Maybe some will help me to deal with my husbands PD, some maybe not. But I'm grateful to know about all of your experiences and how you deal with them.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Shift in focus.....
Carbilev ( Sinemet ) advice please
MORE OFF THAN ON!
WIFEOFPARKY
