For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic So much love here Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2013.02.19 18:32
I can barely watch or listen to the news anymore because of how horribly people treat each other. I don't think that there is an animal on the planet that is as malevolent towards other members of its species as humans can be. Does anyone else get really upset at this? How can people be so cruel?

And yet, when I come here, I am always lifted and inspired by the love I know all of you feel for your pwp. I am so grateful that you share how you cope, and the love you still have for your pwp, even when things are going to hell in a handbasket, because it shows the rest of us that not only can it be done, but that people can treat others with the utmost love, respect, and dignity, at times when it can be most difficult.

I am motivated and moved to do better, be more patient, more compassionate, more understanding, and more forgiving, because of everyone here. Knowing that there are people like you out there makes our crazy world outside of PD a better place.

I guess I just wanted to thank everyone for their participation here. I know it's not always convenient or easy to come and post, but know that when you do, it means so much to everyone here.

By jcoff012 On 2013.02.19 18:36
YOU are a special person and your posts show it. Thank you for your kindness towards us all.

Thank you for taking your time out; we all appreciate all that is on your plate...having been there myself, it is all one can do at times to just care for small children (we had three under six at one time, followed nine years later by our fourth!)

Hugs to you and thank you for being positive...*I* needed this post today...Hugs and love, Jane ;)

By jcoff012 On 2013.02.20 17:46
Lurking,

Been thinking about this topic today. Too often, caregivers give and give until they seemingly have no more...then, somehow, return to their
lives to finish their tasks. There is often little "reward" for a job well done. In fact, oft times it is expected that a caregiver be wife or husband, Dan, as well as chauffeur, nurse, cook, child caregiver, grocery shopper, bill payer, tax preparer, and on... All the while, suffering, mourning the loss of his/her significant other with the expectation that this WILL end and he/she will be alone.

That is the reality of PD.

But, as you so eloquently said, the other side of this board presence is the chance to find hope, friendship, even love, from the musings and postings we find here. It is in our best interests to know that we truly are in this together (now where'd I hear that?) :)

I truly wish I had the answer to PD, and to cancer, and the myriad of other life threatening diseases out there,but I don't. But, together, when allowed, we all can help each other get through the messy, sad thing called Parkinson's.

I agree. I have found new friends who enlighten me, challenge my PWP's choices for treatment, and mostly, offer advice and hope...it only takes one thoughtful post to change a day from bad to good. Thank you for starting this thread. And, thank all of you for your patience with our (my PWP) questions. We need you and your wise council. Thank so many of you for your kind words as we walk down this path,

Love and hugs, Jane

By lurkingforacure On 2013.02.20 20:07
It really stinks to mentally run the PD game all the way through, no one beats it, and it leaves a path of wounded people in its path. But recently, I have realized that all of us really do pass on, just at different times, for different reasons...and that we are lucky to know the love of our pwp while we are here, together, now.

What a gift. While others focus on and bicker over petty issues (OMG, that whole desperate housewives and kim kardashian stuff makes me ill, what a waste of time and intelligence to watch any of that), we caregivers have to deal with things like whether our loved one can carry a glass of water (or more private matters...), and try to give him as much dignity as possible if he needs help. I have come to realize that although one day my husband may leave me too early, against our will, under circumstances we would do anything to change, that in spite of all that, I have known a love few people ever come close to. I don't know why, but somehow that is comforting, like a calming weight, anchoring us in the midst of the PD storm that we live every day.

The love prevails, not matter how bad things get, and will always win. PD can take away so many things, and we all mourn and often vent about the loss of each of those as they slip away, but our loved one is still there, and so is the love. It helps me to remember this, the big picture, the only thing that really matters.

By dans316 On 2013.02.20 20:32
[deleted]

By jcoff012 On 2013.02.20 21:59
Dan,

I know it is hard for you as a caregiver among all of us women, but I want to share something that my FIL shared with just me, if I may.

You see, he was dying of lung cancer (heavy smoker for 30 years) and my MIL had Parkinson's for over 22 years...now, my husband has it...(Not a divorce in the family on either side; my parents were married 51 years, we are married 46 in June, and my husband's parents were married 51 years....) just to explain this testament of devotion...

One morning, not long before his death, he was looking sad at the kitchen table and I sat down and said, "Dad, you ok? Need to talk?" He said, "Jane, I am going to die before she does and it makes me sad that I cannot be here to help her." Isn't that amazing? He could hardly breathe, but HE was worried about HER.

You are right, we, too have only had minor health issues ourselves, but six years ago, my husband stood by my side through cancer and recovery, and so shall I for him. I bet YOU will understand this...when my Dad died, my husband laid out my nightgown every night at the foot of the bed at my Mom's house...special, huh? I will NEVER forget that selfless kindness and I have a lifetime of those moments.

I love that you love her so much...please post often...tell her, "Hi!" And hugs, Jane

By dkleinert On 2013.02.20 22:29
YES! to all of you who wrote, dear Friends! Love is what I have always found here on this site. When I was so lost, so many reached out to me with love, consolation, hope, help, guidance, support - it lifted me up, and gave me a roadmap to follow when I was lost completely. When I am here, I grow stronger, better able to be even more compassionate, more loving, more caring, more thoughtful, all of it because of all of you. My energy is always renewed after being here. Every moment is precious, no matter what state we are in or our loved ones are in. God only grants us this moment, and all of you have taught me to be that person in 1Corinthians 13. I needed patience and you taught me how by your example. I needed to be kinder to my loved one and to myself, and you showed me how. I needed to not want what others had and I didn't - I learned to be grateful for what we had left because of your words and love. I learned to be so be more self-less by your examples. I am truly grateful for all of you!

By dans316 On 2013.02.21 11:18
[deleted]

By jcoff012 On 2013.02.21 11:33
Dan, it always amazes me how, when people let down their guard, how much we have in common...that is one of *my* favorite songs and "Crazy" was my Dad's favorite! Cannot hear it and not think of him! Hugs! Now, *I* AMA smiling! Thanks. Jane

By jcoff012 On 2013.02.21 11:38
AMA...sorry!...Dan, have you heard Iz's version? His music is one thing we brought back from our first trip to Hawaii...for Carl's funeral, he wants only Hawaiian music... That's my guy! Lolol

By dans316 On 2013.02.21 13:19
[deleted]

By dans316 On 2013.02.21 13:26
[deleted]

By carman96 On 2013.02.21 15:48
On our 20th anniversary we had a big luau party! We played "In This Life" by Iz for our special dance!! Small world, right? Love Hawaii and Hawaiian music!
I'm so glad I read this right now because today I am really irritated at my hubby. I needed to be reminded how much I love him and to try to be more patient with him. Not easy sometimes.
Thanks friends!

By jcoff012 On 2013.02.21 20:40
Before anyone says anything, I can't help the facts! ;)) Dan and Carman, we have been to Hawaii 23 times in the last 25 years...and we haven't been for four years! You see, we live in California and love Hawaii...been on cruises around the islands, been to all of the major islands, have stayed in all the big Hilton's, Westins,and we have stayed in condos, hotels with no a/c, and once in a home! You see, going from Central and Northern CA is no big deal...some of our stays were only $199 each person, some on Hilton Honors, and I even won a raffle for a week in Oahu! :)

Our home in Northern CA was ALL tropical, so much so that my husband's student assistant, when she graduated held her party in our home and her parents flew in from Oahu...Her Dad told us we have Aloha in our hearts, then said he has a shirt that matched our master bathroom! It was a fun night. Dan, he was the chef at the Laihana Luau for years, then moved to the one at the Hilton Hawaiian Village.

Our current home is tropical all over the house, but one bedroom is antiques..

We are slack key fans, too...and Iz IS Aloha...

Don't get me started on Hawaii...keep your fingers crossed...we are supposed to go in May...hugs...small world, indeed! Jane ;)

By dans316 On 2013.02.22 09:26
[deleted]

By jcoff012 On 2013.02.22 10:30
Dan, we traveled extensively while Carl worked...he still wants to go to Fiji, but for us that would be a16 hour flight...even if he could do it, *I* no longer could...You see, I now have left leg lymphedema from the three cancer surgeries (uterine cancer), so my leg cannot take that long in a pressurized compartment...swells and is painful...well, I am just checking in...here goes, yet another checkup! But, we don't worry anymore..it is what it is, right? Hugs to you both. Jane

By parkinit On 2013.02.22 19:19
lurking,

So true! And doesn't it help knowing (or at least that is what we say here - wink) that others are handling this disease with such grace and dignity? It certainly brings me to attention when I think about the others struggling here and how graciously and kindly they are handling it makes me stronger and know that I can do it, too.

So if any of you out there aren't telling the truth (said tongue in cheek), please don't enlighten me, because you are making me a better person.

By dans316 On 2013.02.23 12:52
[deleted]

By jcoff012 On 2013.02.23 15:45
Mahalo nui loa, Bruddah Dan! Isn't his voice amazing?

By carman96 On 2013.02.23 22:11
Dan thanks for posting that! I haven't heard that for awhile and it made me cry! Like I said that was our special song and it truly is how I feel about my husband.
Iz was so beloved. Did you know that he was the only non-political person who was ever laid in state at the capitol in Hawaii? So many people came to pay their respects to him. He was so talented.
We are going to Kauai in April! We've been there 6 times. We've been to Maui 3 times and Oahu once. Love Hawaii. I live in Northern California also and it is 5 hours and 20 minutes flight time Oakland to Kauai non stop.

By jcoff012 On 2013.02.23 22:51
Carman, do you go to UCSF to see the Neurology Dept.? We live in Cloverdale, just above Santa Rosa.

By carman96 On 2013.02.23 23:07
Jane we live in the Sierra foothills in Calaveras county. We go to U.C. Davis in Sacramento. It is a two hour each way drive compared to 3+ to go to S.F.
By the way my name is Carole

By jcoff012 On 2013.02.23 23:17
Hi, Carole! We lived in Modesto for 25 years, had property in Calaveras County, and. A home in Pine Mountain Lake! our ex daughter in law lives and works in Sonora..small world. if you ever need me, jane_coffey [at ] comcast.net

We re in Ft. Bragg til tomorrow, then home.

By mylove On 2013.02.24 00:51
Hey, more West-coasties! :-D


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you