As my mother would have said, "AnnT, you'd complain if you were hung with a new rope." I say this with a great deal of affection, and I hope that you understand that the fact that the rope is new doesn't make the hanging any more comfortable.

I don't know what made me log onto Neurotalk today, but it is fortuitous indeed. I got your email about the PAN Forum. The short answer is we very much hope to go, but 2013 and 2014 have not been the kindest of years for us PD-wise. AJ's survived four months in the hospital in 2013 (June to October) with a C-difficile infection resulting from an ill-advised prolonged course of antibiotics to cure a PD – related infection in one of her toes. The hospital experience was an unbelievable nightmare which I think I wrote you about (but I’m not certain), and we have spent most of 2014 totaling up the losses and trying to recover as much of our former capacities as we can. I spent almost the entire four months battling (successfully, thank God) with doctors, nurses, and hospital administrators to be allowed to determine AJ's Parkinson's medications needs. After screwing up her medication schedule so badly that she fell into a full-blown psychotic episode, AJ was strapped into a hospital bed for three days with wrist and ankle restraints and a chest vest (that amantadine can be one mean drug). It took the intercession of Dr. Carolyn Tanner of the Parkinson’s Institute on AJ's behalf as a personal favor (Dr. Tanner had no admitting privileges there and our own doc was away so she just plunged in and read them the Riot Act based on her reputation and sheer nerve and got them to cooperate), to correct her medications and restore her sanity.

That was only the most dramatic example of the incompetence of the staff at what I had always assumed was a first-class hospital. When Ann was finally discharged last October 2013, I had spent nearly all my waking hours at the hospital or a rehab facility to make sure that future errors (and there were many) were quickly spotted and corrected. Unfortunately, the schedule was necessarily punishing, and my own PD progress was substantially accelerated along with AJ’s.

Which brings me to the question that you asked in your email about the Forum. Our plan is to go. We have made travel and transportation reservations and taken scholarship money, figuring that if people with NO legs can travel successfully, then two people with serious gait and balance problems can as well.

Plus, I'm still on the board of directors, and there'll be a board meeting to coincide with the Forum, which makes it that much more important to be in DC at the end of March.

Sorry to seize your thread as an opportunity for personal communication, but I seen my chances I took ‘em. Besides, I think AJ's hospital horror story may be instructive to readers of this site that have not yet have the opportunity to experience a hospital stay post-DX.

As to your actual question about experiences at social events, yes, I have found that on occasion other attendees or the host will be uncomfortably solicitous for five or 10 minutes, and then compound their faux pas by deserting myself or AJ. But as you and I have since we first got to know each other on this site some 15 years ago, I think we still have a fundamental disagreement concerning the treatment of the disabled by the healthy public. I love and admire your insistence on not being treated as an object of pity and incapacity. I have been in those kind of situations and find them embarrassing and insulting. But I have also found myself grateful when the flight attendants at the end of an Air France flight stayed with us when we couldn't disembark because the jetways were all taken and we couldn't descend the steps of the push-up stairs wheeled out for the passengers because PD-impaired depth perception made it impossible to use them. Maybe they had nothing better to do, but the fact that several attendants sat with us for 40 minutes while the flight crew ordered a food service truck with a variable level loading platform to be driven up to the rear exit door to allow us to deplane without using the steps was a true kindness. AJ was so frustrated by our not being able to walk down the same steps as everyone else after a long flight that she began to cry (something she rarely does), and it touched me to see three flight attendants comfort her and hug and reassure her.

But as I have since the beginning off our acquaintance, I admire your refusal to give an inch to this disease until it is ripped from your bleeding hands. May you continue to rage against the dying of the light until well past that time when all the candles have been blown out.

I will write you. One reason I put so much information on this post response is because I'm not certain that my last few emails to have been received. So I'm going to send you one today or tomorrow. It will contain info and news more appropriate to personal correspondence.

With great affection and admiration,

Greg