I'm back

I have been a negligent, albeit busy, blogger. I've been hit by a bout of anxiety, free floating and seemingly baseless. Yes, I'm busy and have some events looming on the horizon for which I need to plan, but none that warrant this feeling of barely contained panic. I know that to blame every physical symptom on my PD is not accurate, however it does seem that there is a long list of potential symptoms listed on almost all descriptions that I've read of the disease. And, anxiety is one, usually linked with depression. Coupled with the anxiety that I've been experiencing is the inability to stay focused on a task for very long, which has effectively eliminated my reading habit, the number of books that I've read in the past year bears no resemblance to former years. I always had several books in process stacked in a helter skelter manner on the floor or the night table next to my bed, and I was never without the next good book waiting in the wings. I can barely remember the last book that I read and have no plans to find a new one. I have a similar problem with writing, which I used to do much more regularly. Now I'm plagued with a major word retrieval problem, which makes it hard to finish a sentence and sends me into spasms of frustration. Another PD symptom?

If there is anyone out there reading this blog, please comment on whether you have had experience with applying for disability for symptoms of PD. How does one know that it's time to stop working or to apply? It seems to be as much an emotional adjustment and lifestyle change as it is a physical decision. I was just informed that I will need to travel more often for my job. How can I do that? I never know how much energy I will have on a day to day basis, some days are good and some are awful. Sometimes my meds seem to forget to kick in, and I'm dragging all day. At the very least I will have to take the travel slower and build in an extra night at a hotel for example, I can't do the one day trips to NYC, leaving at 6am, attending meetings all day and arriving home at 10pm. There is no way I have the stamina for that anymore. Can I still work? Yes, but not the way I used to; I have to start earlier, take more frequent breaks (nap if I'm home), and schedule fewer appointments because my voice gets very tired and weak, my fingers no longer can navigate the keyboard, and sometimes I have trouble remembering what it is I was going to say or how to explain something, all of which is embarrassing when speaking to a group. I need to exercise frequently but often don't have the energy to work and exercise both in the same day. How should I set my priorities? Shouldn't health take first place? I have told my employer and they have made accommodations for me, allowing me to work at home for example. But, every day is a challenge, even when I work at home, because I never know what's in store for me in terms of energy or mental clarity. I guess this will evolve and I'll know what to do and when to move on but I don't want to wait until I'm so far along that I can't enjoy what's left with my life. A 4 room hut on a beach looking out at turquoise waters of a gentle bay beckons. I might have to go and find it.

Pre dawn ramblings

OK, it's 4am and I've checked outside to see if the predicted snow, yes more snow, has started, and it has not. I've checked my email and also the company website for HR information that I've been meaning to look up. Now what? Should I go back to bed? Eat breakfast? What is it that keeps us awake and blogging at 4am while the rest of the world sleeps? Don't think I just woke up either, I've been awake since the first look at the clock at 12:38am. I know I'm not alone, there are unknown numbers of people with PD who have sleep problems. It's well documented but the cause is still speculation - is it the medications or the disease process itself? The last neurologist that I visited handed me a 2 page document listing non pharmacological remedies for dealing with sleep issues. She had copies ready and waiting on her desk so clearly this was a complaint she was used to hearing from her patients. I'm so tired that I just realized that this is an almost exact replica of an earlier posting. I'll stop my rambling, on the topic of sleep anyway.

I recently read a list of "myths and misconceptions" about PD which I thought was really affirming and helpful. The first was that 'looking good does not always equate with feeling good'. How many times have you had the experience of running into someone that you haven't seen in a while and the first words out of their mouth are "you look great!", now I agree that it's nice to hear that someone thinks you look good, but there's an underlying sentiment that accompanies that statement that makes me a little uncomfortable. Is it the suspicion that people, upon hearing that you have PD expect you to look just downright awful and instead they are pleasantly surprised not to see you leaning on a cane or shuffling? What am I supposed to look like? Does looking good mean that you are feeling good? Absolutely not, no relationship necessary. I have days when I can barely walk and the pain in my arm is at its most intense, and still I'll have someone tell me that I "look good". OK, thank you but I feel like crap! Number one myth - "feeling good does not always equate with looking good".

Myth number two - "PD affects only movement". This one is so off base as to make me wonder why anyone in the medical community could still believe it, but they do. PD affects almost every system in your body and symptoms such as poor digestion, constipation, pain, lack of smell, sleep problems, fatigue, depression, anxiety, dizziness, etc are not uncommon. But, not everything is related to PD, another myth to keep in mind.

Don't forget to register for the annual Parkinson's Action Network (PAN) Research & Public Policy Forum, coming up Wednesday, February 17th. This year's forum is being web cast live. Check your local community for a group showing of the program, or click here for more information.