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.
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Sleep! I can't remember what a full night's sleep is. I wake up at 2:30 and struggle to stay in bed with the hope that I can actually get back into la-la land.
ReplyDeleteI don't belong to any of the social websites either, and I had one heck of a time figuring out how to respond to your blog.
On the entry before this one, you talk about cancer in your family. My mother had ovarian and breast and one of my sisters has had breast cancer and I, too, was sure that would be a factor later on, but then this happened 8 1/2 years ago.
There are worse things, I've decided. I lead an active life and my husband and I travel a lot...no children. Most of the other neurological diseases have much less treatment available for symptoms than we do, so I'm grateful for that because I respond well to the meds.
I just wanted to say I found a common thread through many of your entries and you expressed well how I feel at times, but didn't bother to articulate. At 55, I'm managing well, but sometimes I wonder how long it will be before things start becoming difficult. I think it will be a long time, because I am doing really well after so many years. I hope so.
It makes people feel good to offer and give assistance, so I allow it if I need it and thank them anyway if I don't. Once they understand my problem, they feel better and so do I. Hiding it never worked for me, but I have days when I barely think about it and those are very cool.
Vivian
thanks so much for your comments! Can I ask what medications you are on and what kind of routine especially exercise that you follow? I am doing ok compared to a lot of people that I know but I rarely, if ever, have days when I barely think about it, i have definite medication wearing off times every day when I can't navigate very well or I am too exhausted to move. You did say that you are not working any longer, maybe that's the key! thanks for your help!
ReplyDeleteSure. I am taking 2mg Mirapex 3 x daily, 1-125 stalevo 3 x daily, 1/2 of 25/100 sinemet 3 x daily and a sinemet 50, before bed. I exercise every morning, butt, legs, core, and I still downhill and cross country ski, bike ride,walk, volleyball, etc. I find I can still do everything I want to do and I really believe my active lifestyle has done something to slow my progression. I don't work, but I am chair of our selectboard here in our small town in Vermont.( I grew up in RIchmond, VA.)
ReplyDeleteThat has been pretty stressful recently, but I'm managing. Tell me more about yourself.
Hi, I live in Charlottesville, grew up in Baltimore. I love Vermont, it is beautiful! I am also taking Mirapex 3x/day and Stalevo 4x/day. I work for a software company and work at home when I need to. I have a PD support group that meets once a month at a restaurant, the members are mostly young-ish and still working and enjoy chatting with each other and hearing the latest PD news. I'm 56 and getting married again this weekend and I'm a nervous wreck!! I'm too old for this!!
ReplyDeleteI'm an active volunteer with the Parkinson's Action Network and attend as many local conferences as I can. there's one in Charlotte, NC in June, run by the David Phinney Foundation.
more later...