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By LOHENGR1N On 2015.02.09 23:01
I've written before about many years ago calling a support group and being told it was no longer meeting as all the PWP in the group had died.

About ten years or so ago we had a support group consisting or 10 or 12 of us same age, give or take a few years and having P.D. for about the same amount of time give or take a couple years. All of us young onset. Even if we didn't go to a meeting we kept in touch over these years, kindred spirits. As can happen life goes on we get busy and before you realize it you're out of touch. Last Friday I called to find out when the next meeting was. A Woman answered my call .....I didn't know her? She said she was trying to keep the group going again? I asked about some of us and she said she had met one or two and heard or a couple others but they were all gone now! I named one and then another, gone and gone. I'm the only one left...all the same age, all the same duration of disease, all gone....I'm the last one standing ....reality of Parkinson's disease sucks. Gone too are the off color jokes about each other and the effects of P.D. on each other. The freezing in the elevator doors and threatening to goose each other to get us moving again. Go e are the calls out of the blue asking what's shaking? I'm trying to process this information but I'm having trouble coming to grips with it and the finality of it. The shattered families left behind. It is said that at times the gods play with us, I can tell you that sometime their play is cruel. I think about Bob's book and how many of the others who also contributed to it's writing are now gone in the what 2 or 3 years since it's publishing? And yet I'm still here? I don't know where this post is going or if it I is going anywhere. I guess if it has a point it is the try to embrace what you have, make the best of what you've got because with this disease we can turn around and the PWP will be gone when we least expect it and we'll wish for one more call or coffee, one more joke, one more hug and one more laugh. I'll get this processed, I'll get to the newbies in the group this month and in part some wisdom of experience to them and carry on, for my past Parkies and myself. Take care, best of luck and hang in there! Be kind to one another .....

By lurkingforacure On 2015.02.10 08:41
I am really sorry to hear that, Al. That must be sad and scary at the same time, and I commend you for all of the wisdom and support you offer us caregivers in the face of PD.

No one can know how hard the PD path truly is unless they walk it themselves. Thank you for sharing your perspective so that we have a better idea of what our loved ones deal with.

By carman96 On 2015.02.10 09:40
Sorry Al. That must be very difficult. But I think it's very brave of you to go back to the group even though your friends are gone.

By makrivah On 2015.02.10 11:26
Al, you are a strong person. Sharing your point of view and experiences with us is generous and immensely appreciated. You inspire me to be better, kinder and more understanding. God bless you.

By jcoff012 On 2015.02.10 19:54
Al, I am so glad you posted...Everytime I log in and don't see an "Al post" I worry you aren't well. Selfishly, I have come to rely on you. Always here. Always my friend. Always a dear heart. I am also sorry to learn you are facing mortality and that of your friends. I wish I were able to do for you all you have done for Carl and me. If you ever need me, you know how to reach me...the rest of the caregivers here feel the same way, but you must know that. If you ever doubt it, come here, post, and we all will close ranks and tell you.

I firmly believe God puts some people here to mentor and teach others...and you are one of those people. Love you always, Jane

By Mary556 On 2015.02.10 22:54
Peace be with you, Al. Wow. It must have been a shock to hear that news all at once. So many good buddies you will be missing. They sound like a great group of fun people who shared a lot together. You were blessed to have that bond of closeness with others who could understand firsthand all the ways that PD sucks. I admire your spirit and your resilience. You will be a great help and inspiration for the newer support group members. Thank you for all you teach us here.

God bless all PWPs.

By mylove On 2015.02.11 22:12
Hang in there, Al. Know that Ben is still here, and Keith, and more than I'm sure I know about. You guys hold each other up.... encourage each other in the dark recesses of seemingly endless sleepless nights... make sure there's a friendly voice helping someone go on. Don't give up fighting the good fight. We have to, even as the players change on the battlefield and the mighty move on. It will always be worthwhile.

By LOHENGR1N On 2015.02.12 16:02
Thanks for the kind words and thoughts "Guys", it just threw me for a loop for a bit. Guess it was a touch of survivors guilt or something. Again thanks for the support.

By LOHENGR1N On 2015.03.27 20:02
Well We had the second monthly meeting today. Boy I am amazed that the people in the group don't know much about their medications or side-effects it causes. There are a couple of caregivers there that want to have their say and discount what their loved ones are trying to get out or talk over them. But at least it was better than the first meeting. If they would let their PWP talk we could have some pretty good meetings and discussions, maybe given some time that will happen. The PWP there are thirsting for knowledge and for conformation that others know and feel the same way they do at times. The look on Their faces when they hear yup I feel the same way especially when my meds are wearing off they just light up and look at the caregivers like see I told you so! Or a am I still crazy now? Of course I've rubbed a couple the wrong way so they are probably thinking yes you are still crazy and so is He! Well hey I've been around this for quite awhile now so it isn't the first time I've rubbed people the wrong way and hopefully it won't be the last lol. On a more somber note. We had some people from Vermont at the group, after our first group started there were some PWP in Bennington Vermont that started a group and We used to go visit them a couple times a year to combine meetings, they too are no more...... two support groups separated by about 20 miles two States and I'm the only one left standing. 1) Either I've still got a lot of usefulness and stuff left to do or 2) my time's fast approaching! I like to think it's the first option there. So thinking it's the first I guess it is put my head down and plunge onward in the battle just keep going all we can do is keep fighting to the best of our ability because as of late I'm finding when I pop my head up to look around it is getting lonelier and lonelier out here. Just figured I'd update what happened at the meetings, take care, best of luck and hang in there

By lurkingforacure On 2015.03.27 21:35
Al, would it be helpful for the caregivers to go off by themselves for maybe part of the meeting so that they could talk caregiver stuff and the patients could share how they feel and what they are experiencing amongst themselves? it would be hard for people to feel like they could really say what is on their mind if their caregiver was sitting right there, interrupting them and trying to over-ride what they were saying.
You are so kind to help others as you do:)

By Lynnie2 On 2015.03.28 11:12
We don't go to a support group anymore. When he was first diagnosed 7 years ago I went to the meetings and lunch meetings but he only came a few times. He felt worse after going as he would see people worse than him and it was upsetting.
I eventually stopped going as it wasn't helping me either.
Now his communication skills are very bad and so I have to help him explain things that he can't get out.
We are signing up for speech therapy, which might help with volume and pitch but finding words when making a sentence it hard to fix.
I find this support group and another one called Daily Strength helps more than the Support Group ever did but that's just me.
Maybe it was just bad timing when we went, I don't know.
Maybe it's a good thing you are stirring things up to make the groups better.


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