Thank you for this post. You have done an excellent job describing PD. I am hoping it will help my family understand this illness better.

Very nice job Cole. Lately, when I think about my upcoming retirement and it is bitter sweet. I'm thinking what is there to be happy about - I'mm 66 and I have PD. What, one or two years of health and then it is no driving, no traveling, dependency. But then I keep thinking - Debbie your meds need adjusting - this too will pass. I just visited my new neuro and he is starting me on a time release at night time. And then too, I have to remind myself - I will have more time to take care of myself, no commute, especially the exercise, I will be able to join an in person support group, meet new exercise buddies at the Y. I like taking the classes

I keep wondering when I will have to give up driving. I just had a thought - not today.

I didn't know that Azilect kept the dopamine in the brain longer. That is interesting. I didn't get the new time released drug because I will have to have my own insurance and I didn't want to go through my retirement funds in a year or two.
Thank you for sharing your blog!!

Glad you both found it helpful.

deb,

I'm not fully retired, but don't have a full-time job. i help my wife with her cleaning business. Usually doing about 4 jobs a week with her, which amounts to around 3-4 hours a day. Yesterday was unusual in that she had employee problems and I had to go clean a house with her in addition to the regular office in the evening we do every Wed. I made it through, but I did bog down with some dyskinesia symptoms at the end of cleaning the house, which slowed me down. I also do her bookkeeping every week day, which usually involves an hour on average a day.

I lost my last full-time financial officer job in 2011 for a local city due to politics. I was on unemployment for around a year and a half. It was the first time in my life I wasn't successful in getting a job within a year. Aside from the economy being bad at the time, the few interviews I did get, i think my left-hand tremors were too evident, and likely scared them off from hiring me. Not to mention, unknown to me, the PD face had set in which probably didn't make me appealing.

So by the beginning of 2013, we decided I would start helping my wife expand her business because no other options had appeared and the unemployment was due to run out. Up to that point, she'd done everything herself, adding in a helper here and there when she needed it. So we've been surviving financially like that since then, End of last year, she started adding employees so we could expand further and hopefully get her to the point where she is doing more managing than actual cleaning as she can't keep up this pace forever. She's in her early 50s.

Any rate, needless to say, I've had more time. Yet it never seems to be enough, does it? Always something on the never-ending to-do list.

Recently we signed up at the Y because I needed to start exercising more. Right now, I do a Zumba class 3x a week, Pilates 2x a week, Yoga once a week, some weights at least once a week, and swimming a couple times a week (but not heavy). Last week I've also started using the Tai Chi DVD I bought some time ago, hoping to gradually learn that. I'm trying to do that a couple times a week (and even though I'm mostly doing the warm up exercises at present, it has seemed to help my balance, based on my last Pilates balance exercises yesterday). So it does give me a chance to do more of that, which before I had not done. Overall, I believe it is helping.

On the Azilect, it is a MAO-B inhibitor. MAO-B is an enzyme in the brain which breaks down dopamine so it can be sent to the excretion chambers for removal. It is part of the system to regulate how much dopamine is in the brain at any given time.

Obviously, PD patients don't have to worry about having too much dopamine. By inhibiting MAO-B, it slows down the process of getting rid of dopamine in the brain, allowing it to build up to higher levels. So combined with levadopa-induced dopamine, it in essence extends and magnifies its effect. Which is one reason why Azilect is said to help with off times.

Of course, in that article for general public consumption, I didn't want to get too technical, so I just described essentially what it accomplishes.

Thanks for the comments. :)

Rick

Thanks for your post Cole!! Things are turning out good even if not going the way you planned!!!! I'm sure that is how it will happen for me as well. Everything always turns out better than what I project. lol Have a good day!!!

Thank you for taking the time to write the blog. I find myself unable at times to read for too long.... I have marked the page and will keep reading. It may have been you... or someone else... I don't recall... but I do agree I need to learn all I can about PD.

Cole, Thank you for your comprehensive list and definitions. I suffer similarly to you . Its not just tremors, but left hand and foot contractions. I drove NY to Boston and back this weekend to see our daughter. I spent a good deal of time bending my fingers back to release the tight squeeze on the steering wheel. The symptom I get which is most annoying is sweating for no reason. I can be in a room full of people most are ok or cold and I am sweating. I have not found a correlation to time of day, or what I recently ate, or ambient temperature .Thanks Alex

Glad you all found it helpful.

Alex, sounds like we're on the same general track, though to date, I've not had unusual sweating issues.

Today seems to be a tremor day, despite Sinemet. Ug.

Thanks so much for the great job. I've been wanting to meet someone else with PD and it feels like I have "met" someone. Very helpful. Jeanie