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Topic late night musing again Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2011.06.22 01:09
Premonitions of death, Ah part of the big mystery of life isn't it? Right now I don't have the answers. When I step (lol more like lunge forward) through the veil I'll know more. As You know I'm not one to use "stages" or refer to them much. I guess that goes with my outlook on life, you play the hand you're dealt. It also goes with my personal interpretation and gleaning of religious teachings. You know little tidbits that stick with you. One of these has to do with mourning (the loss of health or loved ones), to paraphrase it states, don't go out and rend your clothes our throw ashes or dirt upon yourself or don't go air it in public. Instead wash your face and go about what you can as you can. My observations of the Parkinson's Disease community seem to point out many who do just this. They go out and do what they can, not seeking sympathy just trying to go about and go on with life. If I'm rambling I apologize, I have to get some stuff out to go on so I'm typing here. A few have posted asking me to let them know how I'm doing from time to time. Maybe I haven't because of those views stated above.

I received an email the other day from a forum member asking what stage I'm in? I gave my standard I don't go much for stages because I could be a late stage 5 of getting struck by lightening. Then I told them...I'm probably a mid stage 4. That's about it folks on the H&Y scale about a mid stage 4. There now the cat's out of the bag, do I want pity? No. I would like others to say well if He can still do stuff so can I. Just because there are stages We can't sit and wait till the next stage comes along. Caregivers You can't let Us! You can't! You can't stop the progression, you can't do anything watching and fearing or wondering if this is it, the beginning of the next stage?

You can help Us get on with life the best we can. You can't get caught up in stages Patients or Caregivers! To do so limits the quality of Our life, Yours and Ours. It is a slippery slope, a well they're a stage 3 or 4 so what should I expect, they just can't do this or that. We can! Encourage Us help Us as much as it is safe for Us to do these things. Ruling out depression most of Us want to be as independent as possible. Buy Us some pop tarts, let Us at the bread and toaster, jelly and butter knife. Don't trust Us making coffee? Fine You make the coffee, let Us make the English muffins or toast to go with it. You'll both feel better.

What I'm trying to get at is fighting this disease is so much more than physical therapy or taking medicines on time and structured exercise. These are important yes but so is living, to limit our lives and expecting the medicine or therapy to take life's place isn't realistic. Sure encouragement in therapy might make one feel good and a see you did good today! Might seem like a great pick you upper, however they pale compared to the smile on a loved ones face that you just brought a peanut butter and jelly sandwich or toast to unexpectedly just because you still can do something and have the freedom to do so. Now that's a pick me upper any day of the week. The I'm still useful medicine!

A few things prompted my musing tonight. One of which was Premonition of Death, not the way it is posted on the forum but......A very dear Friend whom I met online many, many years ago on the old AOL message boards was on my mind this weekend, I knew She was going. She passed away Monday. I got an email from one of her daughters Tuesday informing me her mom passed. Carol was a spitfire a kindred soul if you will, She fought long and hard with Parkinson's Disease! What it took from her it had a battle to take. What she lost she lost grudgingly! In the end she was in a nursing home but that still didn't stop her fighting. Damn I'll miss Her 2 a.m. calls! (she was in California and kept forgetting the time difference out here on the East coast). Her whispered conversation so she wouldn't get scolded for sneaking her cel in bed to call that late! Her oh sh*t! I forgot it is that late there! Then her banter joking through our disease because I'd always tell her never mind the time it's always a pleasure to hear your voice. Those are treasured memories She's left Me ..... gone but never forgotten!

So My friends I'm done rambling now, it's time for the pillow. Please remember Me and My friend Carol, don't let Parkinson's Win! Oh, it will takes Us in the end but don't let it take you and yours before that time, live life, play the hand dealt and keep making memories! Because for now that's all anyone can do! Don't let Parkinson's rob you of those memories you're still able to make. Tomorrow I'll get up wash my face and go about life as best I can...I better see you doing the same. Take care, best of luck and hang in there!

By lurkingforacure On 2011.06.22 07:08
Al, I'm so sorry for the loss of your friend. I've no idea why, but PD seems to take the best. I've often wondered if it's because the good people care more, and that the compassion, empathy, innate kindness, whatever you want to call it, makes those neurons more susceptible to whatever it is that causes PD.

I so admire your spirit and attitude. Thank you for staying with us and sharing yourself. You make our world a better place.

By packerman On 2011.06.22 09:59
Thank you for this reminder, that as a Caregiver I need to keep in mind!

By Harriet On 2011.06.22 22:33
Hi Al, Thank you--your post was such an inspiration to help me as a caregiver want to be an encourager to my husband to keep doing as much as he's capable of and to enjoy every day together.

When my husband first got Parkinsons he sold all of his woodworking tools because he thought he'd never be able to use them again. This was a hobby that was dear to his heart. Seven years later we changed our way of thinking. We read someone's post on this forum which said, "Do you want to live every day like you're dying...or die while you're living every day?" We went out and purchased all new woodworking tools, built a woodshop in our yard, and he went back to building. No, he doesn't feel like working out there every day but he has built some amazing furniture pieces and had alot of fun that he'd have missed out on otherwise.

I'm with you on forgetting the stage thing and just washing your face, getting up and doing the things you can do.

Thank you for your wisdom. We are so blessed to be able to see things through your eyes.

By karolinakitty On 2011.06.23 21:13
Awesome Al.... know right what you are saying.....Been away a few days for some R&R but....I know you won't mind but i will use this one too....

By parkinit On 2011.06.25 18:38
I shared with my spouse. He's a "fighter," too, Al. Right now we've been living in defensive mode, but I'd like to get back in offensive saddle again with my beloved. He said all the enjoyment of life is slowly slipping away from him. I realized I was going to lose him sooner than need be if I don't change. I asked him what we can do to allow him to enjoy life again. At least we're trying to get back to somewhere positive. Thanks for your inspirational words.

By Elly On 2011.06.25 21:40
Lohengrin, you are an inspiration.

By oshroshr On 2011.07.21 21:17
I always look for your posts. They are inspirational. We still have my husbands mother here and she is on hospice for pain. MY husband is always trying to encourage her and sometimes it makes me crazy because I am trying to encourge him. But she actually keeps him going and I think he is worse off than her. I think they will both go together and I have been doing this for 17 years so I sometimes get very frustrated. He is so sick a lot of the time but she has the string of nurses and aides etc doesnt make sense or does it?

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