Thursday, May 13, 2010
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!
Tuesday, May 11, 2010
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.
Friday, April 23, 2010
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.
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.
Monday, March 1, 2010
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.
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.
Saturday, February 20, 2010
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.
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.
Tuesday, February 9, 2010
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.
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.
Sunday, January 31, 2010
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?
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?
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