Well, it wasn't quite a birthday party night before last, but it had recently been someone's birthday, and [brag, hint] it will soon be mine. But, in its own wonderful way, the Hendersonville Parkinson's dinner gathering was every bit a party. Underscored by immediate friendship and one significant common denominator, the 8 of us who gathered Monday night had fun, made new friends, renewed long lost friendships, and exchanged valuable information for battling Parkinson's [PD].
Basically a recluse, I am finding that there's nothing better than learning from and laughing with other Parkinsonian's. I guess I am beginning to confront aging this way. Somehow, I have managed to be the "baby" of all my favorite groups--e.g. Schmoozers at my synagogue, many of the PD groups. Name the group I attend, and I am the only one not quite on Medicare yet. But , as the PD seems to be taking an ever-so-slight turn for the worse, I now find myself surrounded by beautiful men and women who refuse to let anything get them down. And what's better than laughter? One of my new friends accidentally took her husband's PD meds one night instead of her own--hilarious in retrospect since, thank G-d, she's fine now. My story of throwing orange juice on a table of businessmen at a breakfast buffet is always a hit, even though I was humiliated at the time and embarrassed to ask for help. I am meeting other klutzes, if you will, who also walk into door jambs and smash their hands into cabinets. More seriously, we talk about fears of dementia and conclude that, based on reality, we're all just fine. But it's scary. Such worries start creeping in anyway as we age, and, if I can share the story about opening the dishwasher to warm a bowl of soup, then someone else has a tail of worse absent-mindedness to tell. Then some angel in the group says the fact that we know these are silly and the fact that we worry we are losing it is a good sign. We're just fine.
But then I learned yesterday that my former captain on the Fire Department had died of "complications of Parkinson's Disease." I want to know more. We are told--and we know all to well--that PD is progressive, but that's not enough. So one of our goals as a group is to stay in touch with the doctors at Vanderbilt and support their research. One new friend and I discovered we are both insomniacs, so next week we are attending a function where that is the primary topic. Despite having been started on clonazepam, I am still sleeping only a few hours a night, then zonking out later in the afternoon, often missing a critical dose of yet another med. We're all different in that respect--schedules, meds, dosages, and reactions to them. There is not one, simple answer to our PD, but it helps to know we aren't alone and that shared information helps us formulate questions for our own doctors.
My exercise routine the last few days has been all about calisthenics. My knees hurt, and my feet feel "shuffly." Sometimes, I consciously "march" around the house (when nobody is looking) just to practice keeping my feet off the carpet, where I worry my toes will find an invisible objects to trip over. But someone at our group Monday night described frozen feet where a foot or the feet simply quit moving forwards. The result of that is a fall. Perhaps that explains my sideways falls where my left foot simply doesn't get the message that it's supposed to step to the side. So many questions....... so many resources in a group. I recommend finding a local PD support and/or information group. There you will find someone who has walked a mile in your shoes, who perhaps has dumped food all over a carefully set table, who has experience with meds or with brain stimulation surgery, and there you will find a friend with whom you can learn and laugh.
Very soon I start the Lee Silverman method of speech therapy--4 days a week for a month. This will be quite a rigorous routine, but, if there's any hope I can again scream at my students or start swallowing again, I will do it--and report. Has anyone else been through this?
Time to lift a dew weights before school. Strength work feels soooooooo good:)
Basically a recluse, I am finding that there's nothing better than learning from and laughing with other Parkinsonian's. I guess I am beginning to confront aging this way. Somehow, I have managed to be the "baby" of all my favorite groups--e.g. Schmoozers at my synagogue, many of the PD groups. Name the group I attend, and I am the only one not quite on Medicare yet. But , as the PD seems to be taking an ever-so-slight turn for the worse, I now find myself surrounded by beautiful men and women who refuse to let anything get them down. And what's better than laughter? One of my new friends accidentally took her husband's PD meds one night instead of her own--hilarious in retrospect since, thank G-d, she's fine now. My story of throwing orange juice on a table of businessmen at a breakfast buffet is always a hit, even though I was humiliated at the time and embarrassed to ask for help. I am meeting other klutzes, if you will, who also walk into door jambs and smash their hands into cabinets. More seriously, we talk about fears of dementia and conclude that, based on reality, we're all just fine. But it's scary. Such worries start creeping in anyway as we age, and, if I can share the story about opening the dishwasher to warm a bowl of soup, then someone else has a tail of worse absent-mindedness to tell. Then some angel in the group says the fact that we know these are silly and the fact that we worry we are losing it is a good sign. We're just fine.
But then I learned yesterday that my former captain on the Fire Department had died of "complications of Parkinson's Disease." I want to know more. We are told--and we know all to well--that PD is progressive, but that's not enough. So one of our goals as a group is to stay in touch with the doctors at Vanderbilt and support their research. One new friend and I discovered we are both insomniacs, so next week we are attending a function where that is the primary topic. Despite having been started on clonazepam, I am still sleeping only a few hours a night, then zonking out later in the afternoon, often missing a critical dose of yet another med. We're all different in that respect--schedules, meds, dosages, and reactions to them. There is not one, simple answer to our PD, but it helps to know we aren't alone and that shared information helps us formulate questions for our own doctors.
My exercise routine the last few days has been all about calisthenics. My knees hurt, and my feet feel "shuffly." Sometimes, I consciously "march" around the house (when nobody is looking) just to practice keeping my feet off the carpet, where I worry my toes will find an invisible objects to trip over. But someone at our group Monday night described frozen feet where a foot or the feet simply quit moving forwards. The result of that is a fall. Perhaps that explains my sideways falls where my left foot simply doesn't get the message that it's supposed to step to the side. So many questions....... so many resources in a group. I recommend finding a local PD support and/or information group. There you will find someone who has walked a mile in your shoes, who perhaps has dumped food all over a carefully set table, who has experience with meds or with brain stimulation surgery, and there you will find a friend with whom you can learn and laugh.
Very soon I start the Lee Silverman method of speech therapy--4 days a week for a month. This will be quite a rigorous routine, but, if there's any hope I can again scream at my students or start swallowing again, I will do it--and report. Has anyone else been through this?
Time to lift a dew weights before school. Strength work feels soooooooo good:)
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