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.