Parkinson's Action Network Forum is approaching!

I would receive a "D" in Blogging if it were a college course. It has, once again, been months. I did want to let everyone know about the Parkinson's Action Network Forum, an annual event that takes place in Washington DC and also via webcast for those people who cannot, or choose not to, make the trip to DC. Register for the webcast, it's easy! Go to the link above and click on the link for the forum. Or join us in person! It's a 3 day conference with the final day spent on Capitol Hill visiting congressional representatives, telling your story while asking for support for legislation that affects Parkinson's Disease. All appointments are arranged by PAN in advance. It's a wonderful opportunity and learning experience, and lots of fun.

I'm back

It has been a very long month, one of those rare times when time seems to stretch out and minutes feel excruciatingly like hours. I reached a breaking point at work, my medications were taking me on a roller coaster ride, symptoms were predictably unpredictable, I couldn't make it through the morning much less the entire day, I began to forget things and lose emails that I was sure I had sent. At the same time, I was making appointments to travel to meet with customers and I was skeptical and downright fearful that I wouldn't be able to cope with any kind of scheduled meeting, presentation, etc. I just never knew when I would feel alert enough to conduct a conversation, negotiate contract pricing or problem solve and the uncertainty was creating intense stress for me. Though I had been assured verbally that my physical difficulties would be 'accommodated', in fact, those accommodations were not in practice honored. After breaking down in tears at the office one day I realized it was time to take a break and take care of myself. I needed to re-order my priorities and put health at the top of the list. My doctor signed off on a month's medical leave and I am happy to be reporting that, after 2 1/2 weeks, I am feeling considerably better. The first few days were very hard for me and I felt very depressed. I felt that I was "giving up" and faced with a day of unscheduled time I was just paralyzed with how to move forward, what to do, how to spend my time. I've decided not to worry about it and focus on two central needs - adequate sleep and daily exercise. I've managed both - I haven't sleep so soundly or long in several years and I've been doing a variety of exercises including long walks now that the weather is gorgeous, Tai Chi classes and forced high intensity cycling at the gym. Some days I can only manage to get to the gym and do one other activity before I have to rest. That's OK. I've baked bread and made a delicious pot of lentil soup; I made my son a birthday cake from scratch (it wasn't the most beautiful cake!); I've planted tulip bulbs; had lunch with friends; read several books; started therapy; and applied for disability which itself takes hours. I have some writing I want to do and my jewelry supplies and tools are begging me to pick them up again. I'm not sure where this will lead but I have a feeling that I will not be returning to work. I now see that I waited too long and pushed myself too hard, I really am not capable physically of working a full day. I am not one for leaving a situation without a good effort, and I often hang around long after my exit is due. I need to know that I did everything that I could. In this case I think I did.

For anyone out there considering applying for disability there is a good checklist for tracking your Parkinson's symptoms and helping your doctor document them. Go to the PAN website and download the Parkinson's Disease Work-Related Disability Assessment Form.

Very early ramblings

It's very early Saturday morning, I went to bed early last night and fell instantly into a deep sleep which lasted about 2 hours, after which I proceeded to waken every hour on the hour until I finally decided to get up. So here I am with the window open and the cool air wafting into the room, the night noises are loud and incessant. I love it when the air turns cooler and I can open the windows and turn the air conditioner off, knowing of course that there might be at most a month before I'll need to close the windows again this time for warmth. It's September and the Jewish new year, Rosh HaShanah initiated the 10 day period of soul searching and atonement which will culminate next weekend in a day of fasting, Yom Kippur. It's a time to think deeply about the previous year and the one to come, to ask forgiveness of those whom you may have offended and to remember those individuals dear to you who have passed on. I always ask my children to forgive me for anything I may have done to hurt them, either intentionally or not. I mourn the loss of loved ones, especially remembering my sister Ilene and my mother who both passed away too soon and without warning. This year I'm struggling with the reality of the escalation of my Parkinson's symptoms and the knowing that I have to change my expectations of myself and accept that I have changed and my daily life will need to change. I need to be kinder to myself and build in the necessary rest time, slow down the pace and silence the inner critic. I need to re-order my priorities and place HEALTH at the top of the list. Family will fall in a close second place and work will move to the bottom or off of the list entirely. As one friend counseled, it's not "disability", it's "sustainability". It's taking care of me. I've taken care of others happily and willingly, now I've got to turn my attention to myself without self pity.

Richmond VA Parkinson's Education Day

October 16th, Saturday, from 8am to 3:30pm at the Koger South Holiday Inn in Richmond, Virginia. For people and families living with Parkinson's Disease, a Community Education Day, sponsored by VCU and the Richmond Metro chapter of APDA. It's friendly, informative and fun. Check it out.

NIH motion to stay the injunction against the use of federal funding for hESC research

Please take a look at this document prepared on behalf of the NIH regarding the recent injunction handed down by a DC district court, Judge Lamberth presiding. It's dense reading and I don't understand all of it but there are a few interesting facts.

The two plaintiffs who brought the original suit argue that they were harmed by the competition of hESC (Human Embryonic Stem Cell) researchers applying for NIH grants.

Fact: the one researcher has NEVER applied for an NIH grant and the other currently has a grant for his research using adult stem cells.

Fact: NIH awards grants based on merit alone, each application is reviewed and receives a grade. There is no competition between or within areas of interest per se. There is no limit to the number of projects receiving funding based on subject alone, only on merit of the study.

Fact: human embryos are not destroyed by the researchers using the stem cell lines for research. The embryo that produced the lines was at one time destroyed. The resulting lines are used by scientists to research cures, they do not need to destroy an embryo to do their research.

Fact: the Dickey-Wicker amendment passed by Congress specifically refers to research that results in the destruction of the embryo. Does it refer to research that subsequently uses material from an embryo that was previously destroyed?

What do you think?

Unexpected mitzvot

I'm looking for input here, a name to call the act of bestowing unexpected charity or good will on another individual. Some names that have been suggested: Surprise Mitzvah; Unexpected Gift; Drive By Charity; Mitzvah of the Moment. I'm looking for something short and catchy. Here's what happened that made me consider this subject. I was driving back from dropping off the rest of my son's "stuff" at college. I was exhausted to the point where I was truly afraid I might fall asleep at the wheel and to make matters worse the traffic was heavy with the usual number of trucks, everyone was driving at least 70+, and no sooner would I enter the left lane to pass when I would notice a huge SUV loom in my rear view mirror mere inches from my tail apparently trying to run me off of the road. It was stressful driving to say the least and exhaustion didn't help. I decided to stop at the Pink Cadillac Diner for a dose of caffeine and possibly some food, remembering that I had eaten only a bagel and it was now almost 5pm.

I sat down at a booth in the "Elvis Room" and looked at the specials and the regular menu. I was groggy from driving and from exhaustion and my eyes just flitted from one part of the menu to another as if with no ability to focus on any one item. The waitress was standing very patiently waiting for me to make up my mind; she looked tired too but a different kind of tired than that which I was feeling, more of a resigned to life kind of tired. She was understanding when I told her that I had been driving and needed a few minutes to collect myself and decide what I wanted. She came back again, I ordered a coke. When she returned she asked if I was ready or did I need some more time. She seemed kind and sympathetic and willing to be patient with my indecisiveness. In the end, I ordered only soup and a fresh from the oven homemade apple crisp with vanilla ice cream which was out of this world delicious. But, the check didn't amount to much and the waitress had been very understanding. And I realized that she couldn't make much money from this job and my dollar bills would mean more to her than to me. So, on the spur of the moment I decided to give her a larger than average tip. Not huge, but 40% instead of 20. I just left the bills on the table. No note, no explanation. I did hope she noticed before stuffing them into her pocket but it was ok if she did not. (Jewish law says that anonymous giving is the highest form of charity, and when both the donor and recipient are unknown to each other is even better.)

I suggest that for our own souls and for those of others that we practice random acts of charity regularly. What shall we call these acts? Send me your suggestions.

A Sad Day for Parkinson's Community

Today has not been a good day for me, I walked into the dentist office (walking is a kind description of the shuffling motion that i was making with my legs) and started to cry as soon as the hygienist asked me how i was doing today. My office is a mile away and yet I could barely drive from one to the other, I was so exhausted and my movements were leaden. My medications have not been behaving lately, I've had some unwanted symptoms and the wearing off symptoms have been more frequent of late. Of course, it doesn't help that I often forget to take my meds on schedule when I'm at the office and busy. And, the stress at work lately has taken a toll as well.

So, the day was already going poorly and then was made even more painful by two news items that I found in my inbox late today. The first one makes me so angry that I'm afraid that I'm not going to be terribly coherent here. To see the full article, click the link of the blog title. But, here's the gist: " A U.S. district court issued a preliminary injunction on Monday stopping federal funding of human embryonic stem cell research...". What!? Why don't people understand? Why did we have to wait all the way through the inane Bush presidency and his ruling against stem cell research, finally hear from Obama that the ban was lifted, and NOW we have to fight all over again?! Don't the dissenters understand that these embryos are destined for the garbage anyway? Should women collect their monthly unfertilized eggs and bury them properly, should teenage boys be arrested for masturbating and "wasting" potential babies?! What is wrong that we value a collection of cells more than the potential to save millions of lives by doing research with these cells to find a cure for some of our more deadly diseases? And, no, adult stem cells are not as effective in studying certain diseases, specifically neurological diseases. See the CAMR, Coalition for the Advancement of Medical Research, web site, http://www.camradvocacy.org/, for an understanding of the differences between adult (multipotent) stem cells and embryonic (pluripotent) stem cells. If you have or have a loved one with Parkinson's Disease, Altzheimer's Disease or other related diseases, please write a letter to your local newspaper or contact your federal congressional representatives to protest this action and support the President's lifting of the ban. These people opposing this research are the same who refuse to believe the facts, they make up their own reality and then insist that we live in their world. A world where evidence of the truth makes no difference in what they believe. Please, my life and the lives of my children, might depend on this!

The second piece of news, icing on the cake of a very bad day, is that the FDA is investigating Stalevo for possible connection to cardiovascular problems found in some patients who are taking the drug. It is a form of sinnemet with an additional component called entacapone. I take the drug and I have been experiencing tightness in my chest and sometimes pain. It's been suggested that I have acid reflux (Likely that I do) or anxiety (probably not) and that either might be the cause of my problems. No one has suggested drug side effects, why not?

I am verging on ranting and I do apologize, but, as I said, it has been a very bad day.