For the sake of future visitors, should I exercise my power to edit my original reply? Or is it best left as is? I don't consider it censorship (believe me, you would know if I did ) but rather a question of kindness. Any opinions?

My opinion, for what it's worth, is that sadly the damage has already been done to folk like me and Linter, although it was offset somewhat by yours and others' further comments Rick.

For the sake of people yet to read it though, I think it might be a good idea to edit the original reply, i.e. just tone it down a bit.

If that was how Rick felt and if that is his true feelings, then he should express them.Throughout life people are going to say things that frighten and upset us. We are going to have unpleasant experiences. We cannot shelter ourselves or expect to be sheltered. Life is tough. It is up to us as individuals to make the most of each day and balance our experiences against the experiences of others. Each person's experience of Parkinson's is different and each person develops Parkinson's at a different age.Those who are older may not live long enough to face the worst scenario and those who are younger may live long enough to see a cure.Those we should admire and respect are people like Rick, who have had Parkinson's a long time, and are struggling with the symptoms now.Someone who has not given up but by using himself as a white rat shows his fighting spirit is still there. Someone who gives his time generously to others. So if that is how he feels at the moment then I think he should say his piece.

I'm with ECD on this -- leave it the way it is. Hey, what doesn't kill me only makes me stronger, bla bla bla. Also, I hate seeing things sanitized. Speak your truth and let the chips fall where they may. (imho.)





(i still won't be showing this thread to my gf ...)

All I can say to the newly diagnosed is that often in the panic that follows diagnosis we forget that for the vast majority of PwP it is a slowly progressing condition. Some luckier than others in the rate of progression.When my husband was diagnosed I was in a state of despair and imagined life would come to a stop within the year.Here we are seven plus years down the line and he still rates his quality of life as 10 out of 10. He still does all the things he did before: dances,runs, plays his melodeon,perhaps not as well as before but still giving him enjoyment.Maybe he has been lucky so far,maybe the future will not be so good.....................all the more reason to make the most of today.

Rick: I had to laugh at your post and the response it drew. It so closely parallels the "we're *ucked, *ucked, totally *ucked" thread of a year (or has it been two?) ago when I asked you to give newbies a reason not to kill ourselves now. Good times, good times… How I miss the innocent, indignant me.

And yet I am ever so grateful for that post. It took the edge of my apathy, helped me find the NOOOOOO! within myself and realize that unless I look at the many truths (the good, the bad and the ugly) of PD I cannot possibly make peace with my apparent path and redirect the energy I had been spending on denial to action (such as it is).

Enter Laura stage left. You are the shining knight in the dark nights of our PD battles! You never cease to amaze me. Keep it coming, girlfriend!

Dear Linter and other PD newbies,

In my humble opinion, here’s the order in which you ought to tackle things, since you asked. It was written before many of this thread's responses:

(1) Week 1 & 2: Educate yourself about the disease, the related legal and financial issues. This will be an ongoing process but give yourself 2 weeks to grasp what PD can do to an otherwise healthy, kind and hard-working person while keeping that all-important card of hope in your back pocket for rainier days. [It sounds like you've done this…]
(2) Week 2 or 3: Find an hour for yourself to be completely alone and, if this is what you need, cry your eyes out…for yourself, your girlfriend, your dreams that will no doubt be changed. Note that I do not say “lost” but “changed” and, like all change, likely to our benefit as well as to our detriment. [It sounds like you're there, linter…and you're not alone.]
(3) Week 3: Decide, as Rick said, whether you are “man enough” to stick by your girlfriend. I totally agree with this advice, with all due respect to Ron. As a woman with PD and young children, She does not need the drama of your interior (and understandable) fight-or-flight fantasies foisted upon her…and she’ll need it even less in the future. If you’re going to leave her when the going gets tough, leave her now while she still has the chance to build a life with someone who will stand by her. As a formerly healthy, kind and hard-working person, I am exhibit A when it comes to affective changes (bitchiness, paranoia, grief), cognitive changes (that eviscerated my sense of self along with my career and destroyed my financial well-being while building an exquisite gown collection). Remember that she is still the person you fell in love with and that, while her expression of it may change, she still loves and appreciates you in her heart of hearts. The difference is that now she needs you and, if she’s held the illusion of self-sufficiency and independence, it probably scares her to death. Accept that this too will be your fault for a while and that she may hate you for it.
(4) Make a list of factual examples of choices and changes that you suspect are related to her PD. Eg: you are missing deadlines (that project 2 weeks ago; the bill payments in January), having trouble with decisions (what to bring to your sister’s last weekend) that made you 2 hours late; daily bursts of anger and tears (at me, the kids, the cat, the gods); fatigue (your sleep pattern is messed up, you’re exhausted all the time). Tell her that you have something to discuss with her and ask for her cooperation. Tell her that you are worried about her but also that you are worried about yourself and your relationship. Even if she is in full-fledged denial of her PD, chances are this will get her attention. Lead her to the conclusion that the time has come to get some help and support….for both of you. If her doctor is not an MDS, have a highly-recommended one’s name and number in hand, along with the name of a woman of her age with PD who is highly recommended by a support group leader or doctor and who is willing to talk with her over coffee.
(5) With or without her, try to assemble a picture of her financial health. She is self-employed, which will complicate matters. Does she have short-term or longterm disability insurance, longterm care insurance, life, etc.? What are her assets and liabilities? If she has a loan, is it insured? Are you insured; to what extent will she be protected if YOU were to get hit by a bus tomorrow? Getting SSDI is no piece of cake; it took me nearly a year and I was among the luckiest ones, just one appeal. Document every challenge big and small. You will need letters of support, doctors’ prognoses and assessment of her inability to work; you will need allies who understand that PD will likely make working dependably impossible, if not now then down the road. Begin to think strategically about ALL documentation. And Rick’s right, Medicare won’t kick in until 2 years after one’s official date of disability.
(6) Re-read lou_lou’s advice. That’s the best of all. The rest will follow…

You will get through this. Both of you. And from your more recent posts, you will get through it together. Good for you both. Peace,
Rose

Just read the following quote which struck me as particularly relevant to this thread:

"It is not so much the extent of our knowledge as our use of it that is important."