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Topic Parkinson's.........a long goodbye. Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2010.03.20 00:13
It's Spring time here in the Mountains of Western Massachusetts. We've strung together a few days of mild temps and sunshine. I'm itching to get raking the yard and seeing the plants bursting up through the ground. However the snows from winter are still clinging in the shady spots and My shoulder and back are telling Me I'll be sorry if I break out the rake.

I posted before remarking about this forum slowing down. As I visited here today a few times, I found Myself reminiscing. Over these years We've lost so many, so many friends I've met and known through this format. Oh I've gained many new friends along this way too. Maybe it's a combination of yesterday and today that's got me thinking of things. I have to retire my service dog and yesterday I received a call from the training center, at the end of next month I go for an interview to replace Him. The training center has had almost a complete turnover of staff since I trained there last. Time goes on I guess. In doing so things change. Our forum has changed, I'm not talking about the New threads or Topic divisions. Given time these may prove beneficial.

Once this was a place where those affected by Parkinson's (caregivers/partners and patients) came. Questions were asked, answers given. Hints and help were offered and as happens also a comradery was built. I don't know maybe we were naive back then, less computer savvy. We realized then and do now that this disease is a long goodbye. We sensed and knew everyone here was in it for the duration. We refer to this place as family and it is, we question, share information and at times have our spats and flare ups, just as any family does. But We posted, we posted about some of the lighter moments of this journey too. We kept in touch through this. We shared the good, the getting out to a store or feeding ducks at a park. A short chat with a neighbor in the warm sunshine. Going down by the water and throwing a line in to see if the fish were biting. I posted regarding the problem of sleeping and how I could fall asleep with the TV on and window open my neighbor outside mowing His lawn but at night I couldn't seem to sleep. I got a response of Someone falling asleep in the dentist chair yet not sleeping at night. Smiles and chuckles for all, all around. I guess what I'm getting at is yes, Parkinson's Disease is in every sense of the term a long goodbye. Yet in the darkness and gloom there are albeit brief bright spots. We don't have to have a problem to solve or a question about the disease or medications to post.

However it does present a bit of a dilemma. Where to post this, Caregiver Topic? Young Onset Topic? Non Caregiver Topic? Ah heck post them on anyone you want I visit them all anyway lol. So are the fish biting where you are? Find any good gadgets at the store? Take up any hobby's lately? With the snow just about gone activity has picked up on the bike trail by my house. It seems every spring many People think the best exercise for pooch and human is to roller blade on the trail! You can see them zipping by eyes wide, mouth agape, shouting watch out I can't stop! Now maybe I've just got a suppressed mean streak or something but a well executed flop just does wonders to cheer Me up. It is odd though they always seem to swear and yell at the dogs, blaming them! Wasn't that why they had the skates on in the first place so the dogs could run? Take care, best of luck and hang in there!

By karolinakitty On 2010.03.20 05:19
Well AL...about the fish .....
It has been, accroding to locals one of the coldest winters here in SC in a long time. Living on Lake Marion once home to a great Striper population, bass, crappie bream,garr, bowfin (and i saved my favorite for last), CATFISH. It's been a hard winter. We didn't get out much. One reason it's harder for Jim to get those heavey overalls over his clothes, but also the fish, the catfish anyway tend to hibernate in the winter. They dig in the mud in the deeper parts and lay low. HOWEVER, about 2 weeks ago we started knocking him dead. In a few hours time i had 10 ranging in size from 15lbs to my biggest at 45. Now, we only go after the monsters here on the lake. We have BIg reels, Heavy rods and use 80lb IFGA braid. I've caught fish over 50lbs for the norm. We also practice CPR, (catch, photograph, release). We keep one every so often in the 20lb range for our freezer. Other then that they all go back. This past week we've had the annual shad kill and blue cats have been biting like mad. The crappie are starting to bite, as well as bream(blue gill to us yankees) and white perch. The shellcrackers should be next, with the bass to follow.
The cat bite will slow down shortly, as it will be breedingseason. They go up lake toward where the river comes in and should be that way for about a month. We'll see how it goes. not sure if this linkwill work but from my photbucket here's a few pics of last years babies...

By mylove On 2010.03.20 10:32
OH MY GOSH.... those are lunkers! Reminds me of Mike Rowe doing his stint on Dirty Jobs as a noodler! Now I'm thinking "caaaaaaatfish. Yum!"

Good to hear from you and your Jim. Glad you guys are still finding some fun!


On another note, Al posted this also on the YOPD board, and I responded to it over there by saying that sometimes I am afraid to post here if I don't have a pressing question or complaint about some part of this disease. But does it really have to be that that is all the board is about? How many of you beside me consider this part of their extended family? Do you come here, like me, to have one of those 'phone calls from home' - to see how everyone is doing and to touch base?

I correspond with others outside of this board and recently something happened to remind me that even if we are all spread out across the globe out here in cyberspace, never underestimate the power of a kind word. We may toss a word or phrase out here and there and never know how it lands. For all we know, that human connection may be the lifeline someone needs to keep going.

Walking through life is sometimes a lot like walking through a heavy fog, especially when life is difficult to bear. When we cannot see, we begin to believe that there is nothing more out there; nothing beyond the short reach of our vision. The world is reduced to that which we can see just in front of our faces. It can become lonely and overwhelming very quickly. "I am all alone in this." We think. "How can I bear it?"

But the reality is that there is a whole vast world out there, of course, hidden just beyond our sight where we can neither see nor touch it. A whole vast world of other people, thinking that they, too, are islands in the mist, stumbling through the whiteness as best they can. It's easy to feel disoriented in that world. Sometimes, all it takes is to stumble upon one fellow traveler, who says "Hey! I am here, too, and we can be lost together." And with that one voice, the small space of your lostness becomes larger.

Bring your struggles and questions and concerns, but bring your joys and triumphs, too. Believe it or not, it makes others hearts lighter too, to hear those words.

Previous Post (copied from YOP Board):

Morning, Al!

Like you, I consider this place part of my 'extended family' (I don't have a lot of real family around), and I come here sometimes just to touch base. I sometimes feel like I'm 'wasting everyone's time' when I bring up things that aren't questions or complaints, so on our end, that's why we've been so quiet. There's a sense (at least to me) that it's somehow disrespectful to those who are struggling to speak of things that aren't going wrong, and I never want to minimize what anyone is going through. Perhaps other people feel somewhat like that.

But you're right. I think there's room for more than that here. I love getting on here and finding out how all of your lives are going, good or bad. It's like phone calls to home. Connections to other human beings are what keep us sustained.

On that tack - how is everyone? Is Spring springing outside your windows like it is up here in the Northwest? I don't know about anyone else but I have spring fever so bad I can hardly stand to stay inside.

By jsmitch On 2010.03.20 11:15
I moved this post to this section (more appropriate) and copied over MyLove's comments from the YOP version.


By mylove On 2010.03.20 11:28
Thanks, Jim!

By LOHENGR1N On 2010.03.20 11:35
karolinakitty, Those are some nice fish! lol, looking at them raised my "spring fever" up a few degrees! And ML, thanks for your words, you said it much better than I did. Jim thanks for sorting it out as to where this belongs. Now, I have to get something for lunch and my nap in then down to watch the bike trail, it's busiest in mid afternoon! Come to think of it the roller skaters are a lot like fish out of water.....flopping around! Gotta go, take care, best of luck and hang in there!

By Frankie On 2010.04.29 11:29
My husband and I are caregivers for his mother, just moved her into her own rooms in our house in February. We take turns taking time away, and his favorite activity is fishing on Oregon's lakes and rivers. It's steelhead season here, and the spring salmon are in the rivers. Trout next month, late. He's been out on various waters a few times since the first of the year, but so far no fish. The year is young.

I run the dogs for my fun. No rollerblades, though--just me and two big dogs in a huge grass field with the meadowlarks calling and the camas blooming in bright blue swaths.

Mom, though--that's the long goodbye, and I appreciate you giving me that thought. She's not a very brave person, and I'm afraid this is going to be the hardest thing she's ever had to go through. We try to make it easier, but I don't think "easy" is at all a descriptor for PD. It's just one day at a time.

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