What a pleasure to hear from you! I didn't know that you would post, I just assumed that you didn't read anymore. I miss your "quit whining" attitude! I'm sure that PD was as difficult for you as being the loving caretaker of Fabian [for over (30?) years], as it was him, having this damned disease!
So I guess you have the sun back for the next 6 months, enjoy it, and may your electricty keep on moving
To all here who don't "know" Bella, she has seen it all. Throughout the whole process she pushed and cajoled her late husband to keep on trying, even though you believe that you don't want to keep going.
I wonder if "Googy" is still out there listening? There i just did a big cast into the pond, we'll see what turns up.
And now that you are registered, people who are looking for that medication change question and/or any other PD related question for their carepartner (one that nobody is giving them a satisfactory opinion on), can now private message you, for advice! see ya - cs

Dear Ol’ CS,

I have been on Apokyn for over a year. My Dr had me take the anti nausea drugs for 2 weeks before I started using the Apokyn. I never had any problem with the anti nausea pills or the Apokyn. I stopped the anti nausea drugs after 2 weeks.

When I began taking the shots, it really pumped me up. It made it easier to do so many things (including bathroom functions)! I felt almost normal, and it was wonderful. The first time I saw the Dr, 6 months later, I ask him why I wasn’t getting as positive an effect from the other drugs that I was getting from the Apokyn. Regrettably he had no answer.

I primarily use it when I have to be able to function reliably at a certain time. You’re a better man than me if you can give yourself the shots. My wife gives me 99% of my shots. I have no problem with the idea of giving myself an injection, Getting everything ready to give an injection is pretty simple. But usually, by the time I think I need it, I can’t function well enough or hold still long enough to actually do the injection.

For a long time, I was using a shot at bedtime to assist me falling asleep. In the last 2 or 3 months, for whatever reason, I haven’t needed that and I am not using nearly as much as I once did.

This tool (Apokyn) is especially useful when traveling and you need to board or exit the plane during an off state, or if we want to go to a movie or out for a nice dinner. It gives you the ability to function in a much more reliable fashion. Use it and enjoy.

Kevin

she doesn't visit anymore but told me to send everyone her love. I know she'd love to hear from everyone.

Trudy Puch
googyuk@pacbell.net

Charlie

Are any of you still using APOKYN and does anyone else have some shared experience with this medication.

Imagine my shock as I read this post to see Kevin's reply. I only read the post because he had taken Apokyn for some time. I had no idea it was an old post resurfacing. Anyway, thanks for letting me read his post all these years later. It was like a little unexpected visit from my best friend...

I check in from time to time just to see how some of you are doing. It's good to see so many of you still here.

If you don't mind me asking how did your friend Kevin pass?

Kevin was on apokyn for some time until he had his DBS. While the DBS allowed him to reduce his meds dramatically (thereby ending his dyskenisia) it was does not stop the progression of the PD. In the end, he was unable to swallow without aspirating and he choose not to have a feeding tube. I think he was tired of fighting the disease and living with it's ravages. He died of Parkinson's and we made certain that was clearly stated on the death certificate. Many times, people allow the secondary cause to be listed, and we have always felt that skews the statistics.

I'm glad to hear the DBS helped and it's awesome he went through the extra effort to have PD stated on his death certificate. Here's too him for that! I'm sorry for your loss.