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.

One morning in Maine

I woke up before the sun today, both bedroom windows were open and the chilly night air filled the room. I huddled further under the blankets and quilt to get warm. You guessed it, I am not in Virginia, did the chilly air give it away? I am in Maine staying with an old friend (we've known each other a long time but neither of us is old, of course!) who recently bought a home on the water. We brought our kayaks with us, and they sit by the water waiting for us to go for another paddle around the cove. I got up early, 6ish, and walked to the water through the wet grass, ferns sparkling with dewdrops in the morning light. It's a long walk to the water and i hadn't had my meds but I managed to get there and inch my way down the slope to the rocky beach. Fortunately there is a rope tied to a tree that I hang onto and helps with the descent. The tide was still low but not the lowest I've seen it, presumably it was on its way in. The larger rocks were still dry enough to sit upon, I found one in the sun where I could watch the mist rising off of the water. I wished I had worn my long sleeved sweatshirt instead of a sleeveless fleece vest, my hands were freezing. I walked around on the rocks for a bit, did a little Tai Chi and yoga to warm myself up, watched the sea birds getting ready for the day, and searched for shells and rocks to collect. I found a small horseshoe crab shell and a few colorful mussel shells. I saw some seaweed hanging from a tree branch and wondered how it had gotten there. I also wondered if I would be able to walk back up to the house and, if not, whether anyone would notice I was missing and come looking for me anytime soon. No worries, awkward though my strides were, I made it back just fine. The mornings in Maine are delightful.

Parkinson's and Meditation

I listen to National Public Radio daily but rarely catch the program "Speaking of Faith", but when I do I am almost always impressed. I often have what some call "driveway moments" where you've arrived home or at your destination but cannot get out of the car because you are so engrossed in the conversation emanating from the radio. This morning, rather yesterday morning, I listened to an interview with a professor of physics from Amherst College who spoke of his long time practice of western style meditation and its connection to his interest in science. He talked about his background and told the story of his early years as a college student; he had a less than stellar grade point average and a laissez faire attitude (and a D in physics) when a conversation with his then physics professor turned his attention to the study of Goethe and meditation. He learned to integrate the intellectual and spiritual aspects of his life and has practiced meditation for more than 30 years. He was diagnosed with Parkinson's Disease a year ago and has some interesting comments about how meditation affects his symptoms and his perception of his disease. Click on the title for a link to the interview. I hope you enjoy it!

What's new at the Parkinson's Action Network (PAN)?

PAN has successfully completed a project with social security to enhance the understanding and definition of PD as it relates to the assessment for work related disability payments. The social security criteria for PD was outdated and not reflective of current research and understanding of the disease. It has been brought up to date and social security now has new guidelines. And, there is a form that you can download and complete, and share with your doctor, that will help Social Security and your health care team track and report your PD symptoms for the disability assessment process. In fact, download a few forms and take them to your doctors the next time you go, they may have other patients that might be interested.

On June 24th PAN will host an interactive webcast called Emerging Therapies, From Microscope to Marketplace, the time is 2:00pm - 4:30pm. See the website for additional details.

Honor the fathers in your life by planting a virtual tulip in PAN's tulip garden by donating to a good cause. See the website.

Take a look at the PAN website, link above in the title of this post, for more information.

A life well lived and other musings

I learned a lesson or three today, the most important that a life well lived leaves room for no regrets when it's time to move on, and that death for some can be a celebration of life and a legacy of love for those still living. Geoff Becker taught his friends and family how to live life so that when the time comes to leave there is gratitude, love, laughter and tears but no regrets. It is not surprising that those people who leave large footprints in life do so also in death. What a world it would be if everyone took a lesson from Geoff; to give to others without sacrificing oneself, to work hard but still have fun, to strive for excellence in all that you do and remain modest about your accomplishments, to love another person steadily year after year and to still be 'in love', to do the same job year after year and still be productive and creative, to set an example for your children and the children of your friends with humor, to enable an auditorium full of family and friends to cry together and laugh together when you are no longer there to share the tears and laughter with them. Thank you Geoff, you wrote the book, and none of us is too old to learn from it.

I'm awake again..or still

I listened to a webcast yesterday, the topic was fatigue and sleep disorders related to Parkinson's Disease. And, here I am awake at 12:30 am in a hotel room, traveling on business. I need to be alert for a meeting tomorrow, fortunately it's not early so maybe I'll be able to sleep later than usual. the webcast was interesting and emphasized the non-motor symptoms of PD and the fact that they, more than the motor symptoms which define the disease, can be the real culprits responsible for day to day misery and low quality of life. I recently visited the neurologist and my primary complaints were fatigue and sleep disturbance. She focused on my sleep problems, which in truth only bother me about 2 or 3 times a week, the rest of the nights I sleep ok. I realized that I can be incredibly fatigued regardless of the amount of sleep I got the previous night, whereas if I did have a bad night's sleep I am invariably fatigued the next day as well. So, fatigue can occur alone whereas poor sleep always results in fatigue, a double whammy. I am still resistant to taking sleeping pills, though she continues to try to talk me into it, I will take melatonin which sometimes (rarely) works. i do all the other things I should do, exercise, no coffee after noon, not too much napping, etc.

I'm tired of that topic (no pun intended). On to more joyful topics. Our wedding was wonderful: lots of good family and friend interactions. Family came from all over: my parents, sister and brother in law from Arizona; uncle and aunt from Colorado; more aunts and uncles from Baltimore; cousin from Boston; nephew-son from St Thomas; son from New York; and daughter from the universe, currently she is living in Puerto Rico. And, friends, both old and new ones came to celebrate. It was wonderful and I was exhausted for the entire week following the wedding. happily exhausted, but nonetheless devoid of any energy. I try to pace myself and plan but find it very hard to do, my energy level is so unpredictable and I don't like holding back when I'm feeling good just to "conserve" my energy. Sometimes I conserve with no discernible results. If I'm feeling good I'd just as soon do as much as I can when I can.

Acupuncture and PD

I don't think I've mentioned this in my blog anywhere but I highly recommend regular acupuncture treatments for people who have Parkinson's Disease. It is a terrific stress and pain reducer and can alleviate other symptoms such as stiffness and digestive problems. I see a local practitioner regularly, about once a month, and vary the length of sessions from a full 75 minute session to a shorter 45 minute session. In fact, the woman that I see instituted shorter sessions at my request, I wanted to see her more frequently but didn't feel that I could afford the long session cost. My insurance does not cover the treatment but I utilize the flexible spending account option offered by my company's health plan and get reimbursed for the acupuncture sessions thereby paying at a pre-tax rate. My practitioner also prescribes herbs for some conditions such as sleeplessness or constipation. The acupuncture, eating healthfully and engaging in regular exercise, I believe, keep me from relying too much on medications, especially those that are for some of the irritating but not too serious symptoms of PD. I've been able to avoid drugs like ambien that have been prescribed for insomnia and prilosec for acid reflux. I had an acupuncture session today and, as usual, it was heavenly. Sounds odd maybe to one who hasn't tried it. Try it and see what you think. Don't go just once, you really need a few sessions to notice results!

PD Woman headed for the altar

The wayward blogger is back to reassure all who doubt it that PD does not signal the end of your life or your fun. Just to prove the veracity of that statement I am here to announce that I am getting married this Sunday! It is not my first marriage, I am one year past my 55th birthday and I have 4 children. Who, you might ask, would marry a woman who has Parkinson's Disease? Well, it turns out that there is at least one man out there who will, his name is Daniel and he professes not to be concerned about the PD. He helps me when I need it and encourages me to get to the gym and take care of myself. We live in central Virginia and still try to get outdoors to hike or kayak on the reservoir nearby, though I am finding it harder and harder to do so. Exercise has saved me I believe, I think I am progressing disease wise much slower because of the exercise. I am worried that I will hold Daniel back but grateful and delighted that he wants to make a life with me despite my disease. Wedding bells beckon and the 'honey do list' needs checking again. When we speak next I will likely be a (re) married woman. Just call me Sadie, "married lady", that's me.

Not such a good blogger

I guess that blogging is not really my style, maybe I'm the wrong generation and not used to having the unidentified public know what's going on in my life on a regular basis. I don't care to know what others are doing "right now" or what they've had for dinner and I assume that they don't really want to know those details about me either. My usual response, not a very kind one I admit, about those people who fill up my facebook pages is that they must not have enough to do with their time if they can find so much of it to waste. OK, so maybe I'm defending my not so stellar record of keeping this blog up to date. After all, here it is almost the end of April and I've yet to mention the fact that April is Parkinson's Disease awareness month and that even the US Congress has passed a resolution to that effect. Not to mention that my home state of Virginia has had the very same resolution on its books for a few years now.

The international symbol of PD is the red tulip and April is a perfect month for finding locally grown and beautiful tulips to give to someone you love who has been affected by PD. Or, check out the PAN website for donations to the virtual tulip garden . Or, take each member of your support group a red tulip. I took several bunches to a local conference and gave each attendee a stem before they left.

I recently heard a local social worker give a talk to the care givers of PD patients and her comments and suggestions were valid and helpful; she cautioned against the effects of stress and the need to take care of oneself to avoid burnout. But, as she spoke I realized that the patient needs the same support and guidance, especially in the earlier stages when s/he is very slowly changing and becoming a person who needs more care. It is so difficult to accept that one's capabilities are not what they used to be, to strike a balance between doing too much just to prove that you still can and giving up by refusing to raise the bar. how much is too much, how much is too little? How do we graciously accept assistance and how do we ask for it when it is not offered? How do we avoid feeling like a burden to our loved ones? How do we continue to pull our weight in a relationship and in our families? How do we ask our children to help us when they are used to coming to us for help? How to let them know we are changing without frightening them?

I am in a hotel room and cannot sleep, probably but not necessarily due to the cup of coffee I had late in the afternoon. I was afraid that I would not be able to make it through my meeting though I knew it was risky and that I might not sleep. No sleep was preferable to nodding off at the speakers table in full view of a roomful of scientific journal editors. I am happy to report that I survived without a yawn or my head hitting the table. However I am now wide awake and it is almost 1 am.

Happy April! Spread those tulips around.

Early diagnosis ramblings

I've been reading through some old writings and I found this entry that I made when I was first diagnosed with Parkinson's.

Something a co-worker said today sent me to the writing desk after months of abstinence. She asked me, jokingly of course, if I thought her mother would notice if she used the blank check her mother had given her to help pay for a private school for her autistic son to finance a trip to Tahiti instead. I laughed and responded that I was already packed and ready to go, sarong and toothbrush in hand. Of course, that would have been everything required of the ‘old’ me (the former me, I should say, the ‘old’ me is now, not then). In days past, I would have been ready at a moments notice, requiring only the minimum of essentials. These days, I would need my medications, both of them, and of course extra bottles in case I needed a refill, my dental floss in addition to a toothbrush, I get lots of food stuck in my teeth now that I’m older. I need my vitamin supplements in case the studies that indicate they slow the progression of Parkinson’s are correct, and oh yeah, the laxatives or fiber for the constipation brought on by both the meds and the disease I need those too. And my tweezers can’t leave home without them, those little black hairs will multiply, take over and turn me into a werewolf or some other awful creature, blotting out any semblance of natural beauty. The list goes on, and I realize I am not any longer that person with whom I identify; years of taking care of kids first, financial responsibility, loss of health and energy, impaired physical capability have eroded that sense of adventure and carefree choices. I sometimes close my eyes, really tight, and try to turn back the hands of the clock and pretend that I never heard the lady neurologist say the P word in her heavily accented voice. I remember the moment the curtain first began to close, and I realized I had crossed a threshold never to be crossed again, there would be no going back, no matter what the second diagnosis. Tremor in my right hand, ‘twitching’ I called it, I guess to make it seem trivial, never guessing, really I never considered, the P disease until the doctor suggested that I had a 60% chance of the diagnosis. “Surely you suspected", she said, but really, I never did, which is funny because I am fairly medically savvy, but I never even bothered to check out my symptoms, they seemed vague and I did consider MS but never really checked that out either, neither of which is very much like me, maybe I just didn’t want to know, suspected something bad on some level but didn’t want to confirm it.

Honestly I think I assumed I was home free, that cancer would get me at age 80 ish but that I had weathered all the bad luck one person could possibly be assigned, chronic debilitating degenerative neurological disease was not part of my picture. I figured that I had put enough time between both my mother's and my sister's deaths, I was newly separated after 23 years of ‘sticking it out’, in a new love relationship and having my share of difficulties as the kids coped with the new situation and I coped with my guilt, then BAM!! I get hit between the eyes the minute I stop paying attention.

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.

Wayward blogger

I've been back for a week now but until today have not found the time to write. I returned home to 100+ work emails, several mini crises (and a lot less tolerance for coping with them) and the news that the venue that I had secured to show the PAN annual forum , this year a web cast, did not have wireless as I had been promised. So, I was off to find another location while chastising myself for not following my gut feeling of looking at the space before leaving for vacation and distributing flyers. Lesson learned and a new location secured.

Bonaire was wonderfully warm and relaxing and left me with no interest in the new snow we received yesterday. I have noticed that as relaxed, rested and well fed as I was on vacation I could not leave everything behind, at least not 100%. The PD follows me everywhere, whether invited or not, I can never escape it entirely. My medication schedule must be followed, no matter where in the world I find myself and errant symptoms continue to arise as if to remind me not to fool myself into thinking I'm a normal healthy person. For example, we toured the national park one day, stopping at a beautiful sandy beach, secluded and somewhat hard to reach. The water was accessible and it was a great snorkeling location. But, no sooner had I gotten in the water with my fins and mask that I began to experience a panic attack, my chest tightened and I felt as if I couldn't breathe. I headed for shore and ripped off my mask and snorkel as if my life depended upon it, then I was sorry that I hadn't been able to enjoy the huge and brightly colored parrot fish that was swimming so close to shore. I wanted to test the waters again (sorry for the pun, I only noticed after I'd published this entry!) but instead sat on the beach and rested in the sun. The chest tightness is something that bothers me regularly and I've been examined and had a stress test but no signs of heart trouble were found; I've decided it's muscular and related to PD but I have no confirmation of that and there's not much in the literature to suggest that as a symptom, however I have visited chat sites and blogs where PD patients complain of similar pains.

How does one know when to slow down, when to give up doing things that are practical but not enjoyable, how do I know when I've reached the point in the hike where you can relax because finally you can see the summit ahead, there's no need to push yourself any longer, it's time to enjoy the last stretch. Look at the scenery, experience the breeze on your face, let go of all worries and open up your heart. I have a favorite song, by Kris Delmhorst called Everything is Music. It is adapted from a Rumi poem and one of my favorite lines is Why do you stay in jail when the door is wide open? Let the beauty that you love be what you do. Why indeed?

PD Woman on vacation

I will be away this week and will not be able to fulfill new orders for earrings until I return.

I am in the Dutch Antilles, we woke at 3am Saturday morning to make our flight, and I had a terrible cold which was very painful during take off and landing. Traveling in general is more challenging, it does take me longer to recuperate from a long and tiring trip but I'm not about to stay home just because of my PD. I am hoping to be rested and ready to go tomorrow - we're going snorkeling and sea glass collecting. And, we'll have another dinner overlooking the water while the sun sets in front of us. I feel like a blogger in paradise. This IS paradise and I've vowed to stay away from the computer as much as possible. So, I'll sign off and check in later.

When will I ever learn?

For followers of this blog (there are none except my son, Sam) who may have noticed, I have not posted an entry for almost a week now. I have been at a sales conference in Arizona, attending meetings all day while keeping up with my regular email. It is exhausting for the young and hearty but for someone like me it is doubly so, and add to that a new head cold complete with stuffy sinuses, sore throat and a drippy nose and a recipe for misery is born. I gave myself permission to miss a few meetings and I went to bed early each night while my colleagues partied most of the night away. Still, I feel awful. Don't get me wrong, it hasn't been all negative. The hotel resort is gorgeous, the weather is lovely, the food stupendous and I had an opportunity to visit with my parents who live close by. The bottom line is I cannot do what I might have been able to do without PD, and although I know this I still try to push my limits. And, to make it worse, I have another trip back to back with this one; those plans were made first before I found out about the sales conference. I should have cancelled one or the other but I thought I could handle both, as long as I rested as much as possible on this trip. That would have been a good plan but I didn't anticipate that I would get sick and I didn't build into my plan the fact that something might go wrong. I just cannot stress my body or stretch my limits as much as I might have previously. Part of that is certainly the normal aging process but there is much more than aging going on, and it is related to PD and its symptoms. For example, the other night I went to dinner and forgot to take my evening pill with me and the walk back to my room was long so I decided to wait until after dinner. So, by the time I was finished eating and on my way back to my room I was very slow and stiff and having a very hard time. To make matters worse I got to my room and realized i had left my key inside. The lobby was a long way away and i did not have my cell phone with me either. The thought of walking back for the key and then walking back to my room again was unbearable. I sat on the floor outside my room and cried. Then I remembered that there was a house phone down the hall so I limped over to it and called the front desk. I didn't even have to ask, they offered to send someone to meet me at my room with the key. Crisis averted but not without emotional and physical cost. So the question is will I ever learn? We shall see.

Amazing what you can do if you have to....

Some days the idea of planting my feet on the ground after waking in the morning makes me wince, and taking a shower exhausts me so much that I fall into bed for a short nap. Other days I take advantage of my sleeplessness and go to the gym at 7am, ride the stationary bike like a bat out of hell, lift weights and stretch leisurely. This disease turns me into a Jekyll and Hyde; no wonder people with PD have a difficult time proving disability, one day they're animated and energetic and the next they're close to catatonic, closely resembling a bowl of pudding. And, then there are the days that grab you by the back of the neck and throw you into the ring without asking how you're feeling. A day such as I had yesterday - I was up and showering at 4:30 am to get to the airport by 5:30 for a 6:30 flight. The outside temps were below freezing and there was a dusting of snow on the ground. I was due to fly to Atlanta, catch a connecting flight and be in Phoenix Arizona for lunch with my parents, sister and brother-in-law. Though in no mood to be upright with my eyes open and certainly not up for a rude awakening by a hot shower I nevertheless forced myself to go through the motions and arrived at the airport in plenty of time, only to find that just minutes before the Atlanta airport decided to close to incoming flights and mine was delayed until almost 9am. Of course, 9am eventually became 9:45am but I busied myself with a new book and just before the flight took off I met two interesting and friendly women, both on the same flight. Beverley lives in Charlottesville as do I and Sandy is recently moved here, we talked about our work, our connections to Charlottesville, the advantages to being in business for oneself (one of us was, one wished she was), divorce (2 of us were), salaries in the area (low) and the weather (of course). All 3 of us boarded the plane, finally, and we arrived in Atlanta where I learned that the connecting flight which I was sure I had missed was also delayed and, if I ran, I might just possibly (it was a long shot but still possible) make it. The flight attendant let me take the first seat up front so I could be the first off the plane and I changed my shoes from boots to running shoes to be best prepared. But, the pilot took forever docking the plane, the gate was not empty, and the clocked ticked away the minutes as it became clearer that I was not going to make it, especially with the by now huge and heavy backpack I was carrying; it started out manageable but add a new book and a pair of boots and it felt like a baby elephant. Nevertheless, I darted out of the plane and ran as best I could down an escalator, through terminal D heading for the train to terminal B for the connecting flight. I saw the train letting passengers on but the door slid shut just before I could jump in, and no amount of banging on the sliding door would make it open to let me in. I waited for the next train and a minute never seemed so long...then I ran up a huge escalator on the heels of another passenger also running, to terminal B, gate 28, which was not the furthest point but might as well have been. I was panting and coughing by this time, my backpack was open and boots spilling out though I didn't know it at the time, my chest was heaving and tight and the plane was just pulling away from the gate, I could see it from the windows, I had missed it my mere minutes! The funny thing was that I did it, I ran through the airport, up and down, in and out, and momentarily forgot completely that I had Parkinson's. It didn't take long for my memory to return, I wasn't as fast as I might have been a few years ago and I coughed for two hours after the fact, and never ate lunch because I couldn't move from the seat that I took at the gate for the next connecting flight. But, it didn't kill me and I certainly got my exercise for the day. It is amazing what we can do...and what we tell ourselves we can't do.

Sleep? What's that?

I wonder how many people with Parkinson's are awake simultaneously each night? I never had trouble sleeping, in fact it was one of life's greatest pleasures. If I was feeling stressed or had a lot to do the next day I would occasionally lie awake and not be able to relax enough to fall asleep, but I found that if I made a list of everything that was on my mind I was usually able to calm down enough to get to sleep quickly. I kept a pen and notebook by my bed for that purpose, and also so that I could write down my dreams should I wake and remember one. What I'm experiencing now is new for me. I fall asleep without much trouble but frequently wake up a few hours later and then the night proceeds one of two ways: Scenario #1 - I wake up, wide awake, look at the clock and see that it's only midnight or so, but I feel like it's time to start my day. When this happens I usually wake every hour on the hour until morning. Scenario #2 - I sleep fine until 4am or so, then I'm so awake that I can't go back to sleep so I get up, write emails, make jewelry, shop online, etc. Sometimes I'll get back in bed and sleep for an hour, then I feel groggy all day. Some nights I sleep through the night but those nights are becoming more rare. The worst consequence is that I dread bedtime, it's no longer a sanctuary, it is torture. I've tried exercise, melatonin, meditation, counting sheep, I don't drink caffeine after breakfast, etc. It is the Parkinson's because I've heard this complaint from a lot of PD people, and I've heard that the chat rooms light up with PD people late at night. What is it about the disease that causes this behavior? Although it is recognized as a symptom and problem for a lot of people I don't think researchers know exactly why this is so. I'll see what I can find and add some links if I find anything interesting. In the meanwhile, avoid telling me to "sleep well".

A birthday present

I remember becoming a mother for the second time; it was 23 years ago today, and this second baby was my first son. I was convinced I was having another daughter, I don't know why I was so sure but I was. But, to my surprise, instead of Samantha, Samuel Bennett was born. It was a Sunday afternoon at the Baltimore Birth Center on Park Heights Avenue and I had an entourage of family with me that day including my 4 1/2 year old daughter Rachel, father, mother, sister, grandmother, husband, a nurse and the midwife. Sam weighed in at 10 lbs. even (yes, it hurt!)sometime after noon. The day was cold and sunny, with a lot of residual ice from an earlier snowstorm lining the streets. We stayed the afternoon, rested a bit, and were home by 6pm. Now Sam is an adult and an author on my blog, see today's guest entry. And, I think it's entirely fitting that it is his first entry and his birthday.

Happy Birthday, Sam! I'm proud of the adult you have become and I welcome you to contribute to my blog whenever you feel the inclination to do so. It's a wonderful birthday present, one that is given rather than received, and I thank you! Mom

GUEST POST: A Son's perspective

I was asked by my mother to write a post here, and at first, I didn't know what form it would take. No surprise there, solicited entries tend to be difficult to compose, and when it's on a topic of particular importance (I love my mother, and I have a huge amount of respect for her ability to stay relatively sane while dealing with this disease), the process can be more daunting still.

It occurred to me, though, that the reason I have such a difficulty is not because I can't think of what to say, but because I have way too much to say. You see, I have a degree in biology with a concentration in neuroscience. I am well-versed in Substantia Nigra lore, dopamine uptake and the selective nature required to avoid schizophrenic symptoms, as well as the evolution of treatments and research surrounding Parkinson's. I almost never think about that world anymore, with the notable exception of whenever I think about my mother and her Parkinson's.

So, what does a person do when they have an overabundance of knowledge and someone in their life who is touched directly by a part of that knowledge? For the most part, you shut up, you hug your loved one, and you provide the best emotional support you can. At least, you do that if you're strong enough, and you almost never are. At least, I wasn't, not at first.

It's very easy to get caught up in your own emotional reactions to a person in your life with a condition such as Parkinson's. You think, "If I talk about it, I'll jinx it. It'll get worse," or you feel too uncomfortable speaking about it because you know that your intellectual understanding is absolutely incompatible with an experiential understanding. And so, to the person you love, it can almost seem like you're ignoring them.

And with that realization, I figured out that there's only one thing I really want to say in this post, and that is, always make sure the affected person in your life knows how much you care. It doesn't always have to be a display of sympathy or empathy, but just something as simple as asking how they're feeling that day, or making sure they're comfortable after work, or offering to drive to the store so they can rest.

Parkinson's is difficult to deal with--I can't even imagine, so I won't try to comment on that. But as a bystander, and a person with extensive knowledge of the subject, I can tell you this: love and affection really do make things better. And that goes for you, too. Express yourself, have a dialog, and be sensitive. It's not possible to turn Parkinson's on and off. It is possible to get over yourself.

That's a lesson I learned the hard way, and I'm so glad I did.

I love you mom!

How to live with a chronic disease and not sound like a whiner

No, sorry, I don't have an answer to the conundrum proposed by the title of today's post, in fact I find this to be a very tricky area. How DO you cope with a chronic disease and get your needs met without draining the energy of your loved ones? How do you graciously accept help when you need it and still maintain your sense of independence? How do you allow others to do for you and still challenge yourself to do more? When is it time to push yourself to a higher level and when is it time to rest?

It seems that friends and family naturally rally around when a loved one has an acute illness and is in need of hospitalization or surgery. People know what to do and there is a goal to work towards; they can visit the patient, send a card, offer support, bring meals, offer rides to appointments etc. The same efforts don't translate well when an illness is chronic, although there is often a flurry of activity after the initial diagnosis. I guess it's just human nature for attention to wane and interest to fade. Day in and day out attention is hard to sustain and often not necessary.

For the person with the disease the challenge is to find the right balance; one still needs attention from friends and family, if only to know that there is a person that you can call who is a good listener. The more difficult dilemma is to provide one's self with enough attention, just enough so that you remember those daily regimens such as medication and exercise, enough to maintain optimal health, but not so much that you become mired in your daily complaints and forget to enjoy life. And, the balance changes depending upon the progression of the disease, how you feel on a given day, what kinds of stress you are experiencing at a given time. How does one adjust the balance and continue to maintain a sense of optimism without ignoring reality? How does one receive the support and comfort from friends and lovers without appearing to be whining or demanding, too weak or needy? I don't think that anyone can manage to feel courageous and upbeat day after day, yet it is unbearable to feel negative and hopeless. Realistic yet appreciative, vigilant yet flexible, upbeat yet thoughtful....it is an exhausting balancing act.

How do I take care of myself and focus on my needs when, like a salmon swimming upstream, I am exhausted by the relentless effort as I fight the tide of neurological damage. Yes, I am having a bad symptom day. Fatigue and chest tightness have overwhelmed me, I debate whether I am taking better care of myself to rest at home or to force myself to go to the gym. I have lost my way as I contemplate which fork in the road to choose.