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 IMPORTANT ... Please read 
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post IMPORTANT ... Please read
This is an off-topic post, but wanted to make sure everyone who visits the forum will read this.

I know that very few of us -- relative to the number of people subscribed or who visit these forums on a daily basis -- either pose questions, offer suggestions, check in, or simply provide tangible support to our fellow LBD travellers.

I'm concerned that some of us may be perceived as dominating the discussion, thereby putting others off from more actively participating. Some may be nervous about putting their thoughts or questions "out in public." Many are searching -- in anonymity -- for answers afraid to even admit to themselves that their LO may have LBD.

To the silent majority, this is just a reach-out to you to say we miss your voices, we're sorry if we seem "clique-ish" at times (this forum is my lifeboat as we have no friends or family in this area), to beg you to please understand that this forum is here for use by ALL, and to know securely that your input -- even just a"hello" -- would mean so much to everyone else on the forum.

What prompted this note ... this morning I posted a reply on one thread. When I came back to that thread just 10 minutes later, I saw that 26 people had already visited/viewed the response. I would love to know who you are and what your own circumstances are that bring you to this forum.

So, please, don't hold back from taking advantage of all of the personal support we could all offer if you would let us know you are here.

Thank you for taking a moment to read this, and continued good thoughts for you and yours as we all toil together. (Please feel free to post a response!)

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Renata (and Jerome-in-Heaven)


Fri Mar 13, 2009 3:01 pm
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Joined: Tue Dec 09, 2008 11:19 pm
Posts: 2
Post Former silent user of lbda site
Hello, Been using site for info and comfort since 2005.Been over whelmed with researching for a cure, fighting with Doc's for "experimental treatments", the emotional grief , legal and financal matters, daily needs of working and being sol caregiver.I use to cry all the way to work , look at the site at work and sob and cry all the way home. Because I couldn't cry in front of my LO. Now he goes with me and I drop him at daycare we get to see each other more and I know he is safe while I am at work. My work days were cut to three day a week . Felt isolated , my identity was work but I feel I am more than just a clerk in a healthfood store with a sick husband . It feels like early retirement and having a life. Difference between living to work or working to live.LO"s life is better becasue he is at home with me more instead of daycare. One's whole life can be taken up with work and one has never really lived it. Having LO with LBDA is turning into a spritual journey of lessons in love, compassion,faith, trust that life is unfolding as it should.

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Donna


Thu Mar 26, 2009 3:46 am
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Joined: Sat Feb 28, 2009 8:48 am
Posts: 5
Location: United States
Post 
I read the posts here several times a day and have found comfort, advice and sometimes gallows-humor which makes you laugh and relieves the pressure.. It does help. You can feel so isolated and alone on this journey with LBD with not many understanding the devastating changes happening to your LO.

It is true there seems to be a few who dominate most of the posting but they also contribute the most. What would we do without you? Thanks to all.


Thu Mar 26, 2009 7:12 am
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Joined: Fri May 11, 2007 12:54 pm
Posts: 115
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Dear Renata and Jerome,

You are amazing! Thank you for the words of encouragement and support for all of us posting on this site. This forum has been a lifesaver for me. Hope that it does the same for others and that new people don't get intimidated. I know that I wouldn't have been able to cope without reading and participating on this site. No one in my family fully understood how much this disease took control of my loved ones life or my life. Even when you aren't with your LBD loved one, you are still worrying, planning, and scheduling everything around this disease. This disease becomes your life after awhile even though you try not to let it. I am forever grateful for this medium.

Renata, you are an angel :)

Joyce K


Thu Mar 26, 2009 9:18 am
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
Post 
I agree with Dee, there does seem to be one or two that do dominate this board - but clique-ish - no, I have never felt that way. The ones that do seem to dominate or it looks like are being clique-is are the ones that are keeping this board going. Lots of times I just come in and read and it boosts me for another bit of time, whether it be for a few minutes or for several hours.

My thoughts: What would we do for comfort and support without you all? I thank each and everyone of you that are here on a daily basis. :)


Thu Mar 26, 2009 11:35 am
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Joined: Mon Feb 16, 2009 12:04 am
Posts: 47
Location: Michigan
Post 
Agreement here as well...I read every AM and PM, chime in sometimes, but primarily my experience echoes others.

I have to smile...my mom cares for my dad with LBD and I provide support but do not live with them. I stay with them a couple times a week to relieve her. I have been sharing many of the experiences on this forum as she does not have a computer. So, this morning I called to see how they were and she said, "Well, we're in Lewy Land today."

So you see, your trials and tribulations, your willingness to share and reach out to others, your honesty and your sense of humor have had far reaching positive results. Thank you for this forum, it has truly been a blessing to me and my family. Sharon :wink:


Thu Mar 26, 2009 7:58 pm
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Yes, such a blessing to all of us. I can't thank the ones here enough, especially the 'dominant ones' :wink: that are on this site so much and keeping all of us up to speed as to what is happening to LO's, meds, therapies and the whole ball of wax.


Thu Mar 26, 2009 8:55 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Dear All,

Could not give a better answer than all of these! What an outstanding group! You are truly amazing people and I thank each of you for being so wonderful. Cliquish? No. I am fairly new, having only joined in Oct I believe it was. At that point I was only "reading" the posts and was too ...embarrassed, ashamed, etc. to join in. Some things we discuss are very personal. Being one that was always a leader I found myself in a position of a novice, knowing nothing about this illness...other than what I had read and was told to me by the neurologists. My LO hit the depths of a LBD episode and I thought I was going to loose it. At that time I didn't know where to turn...I emailed Irene...who suggested I join in the posts. I did. It was one of the best things I ever did. I will never forget Irene for helping me through that difficult time. The information everyone gave me, the support, the compassion. It was a real life saver..no, no cliques here, they just let me jump in and become one of them. Sometimes I may post too much or respond too much..but it has become important to me to offer the same help to others that was offered to me..and saved me in a time of great need.

Hugs to all.

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Dianne C.


Thu Mar 26, 2009 10:45 pm
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Joined: Thu Feb 19, 2009 12:45 am
Posts: 103
Location: St.Paul
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I agree with all of you. This site has literally saved my life. I was on the brink of taking my own life as the only way. I just happened upon it one night and am so very grateful. To all of you who have supported me and listened to me and given me much to live for I will be eternally grateful. I felt a lot like Dianne did. A little shy to join in and bare my soul. Very personal and emotional. I check this place morning and evening. It is the last thing I do before sleeping. It gives me the strength to face another hellish day. I, too, felt so isolated. To know there are many out there dealing with Lewy is so very sad but very helpful.
I know I've said it before, but thank you, thank you all for being here for me and with me on this journey through hell.
Much love and support to you all.
Connie

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In & out of stage 4.


Fri Mar 27, 2009 12:49 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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heycon,

What a moving story, thanks for sharing it with us. You are a very caring, thoughtful person and we do appreciate you and your posts. :) I think most of us have been in the depths of despair at one time or another while dealing with this horrible disease called LBD. We didn't have "caregiver classes." Nobody ever taught us how to take care of a person with a lengthy, terminal illness. Its amazing how we have all rallied, managed to hang on and do what is right for our LOs.
This site has allowed us to vent, laugh and cry with each other. The educational articles, sites, tidbits, etc. have been invaluable in teaching us how to deal with LBD. We have learned so much from each other.
Yes, we enjoy meeting all of the new folks who are searching for an answer just like the rest of us. So if you have not joined in yet...please do, we would love to meet you.
Wishing strength and good luck to all.
Dianne

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Dianne C.


Fri Mar 27, 2009 11:11 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
To all of our LBD forum members:
This forum is made of up of all the people that are here, the forum would be meaningless if no people were here to use it,
some of us have just walked the path further than others. :wink:
and choose to share what we have learned in our own experiences. We all have or are finding out the medical profession isn't up on everything with LBD, they are getting there slowly, but we who have lived
LBD on a day to day basis know what it is like!
This is a place to ask and receive, to vent and to certainly share ! :)

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Irene Selak


Sat Mar 28, 2009 8:33 am
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
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To everyone who comes to this forum,

I've said it before but I'll say it again: Thank you for coming- reading, writing, by posting and advising those who are caregivers and who are in real need to survive the Lewies. For many who are alone in this awful journey and who feel their old age has been stolen, (like myself) these posts are like a family. One's own family is a generation younger, has its own life, helps if it can, friends drift away, and pretty soon, the caregiver is left to fend for him-herself.

I come here at least once a day and am grateful for the posts. They are a wonderful help, better than any doctor's "handouts"-ie- "I'll see you in a year." Don't go away, please. Dinny W.


Sun Mar 29, 2009 1:19 pm
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Joined: Wed Dec 12, 2007 4:53 pm
Posts: 88
Location: Melbourne Beach, FL
Post Partiipation in Forum
Like everyone else, I am very grateful for the information and experience shared on this site. Those with more technical and medical expertise are very helpful to others (like me) who do not know the appropriate medical lingo. These persons have been a very good source of information as well as personal assistance off Forum.

All I can offer is my experience with this disease and I am relatively new as a caregiver to my spouse who has LBD. As I have learned, while there is much commonality in our experiences, there are also differences. Having learned how difficult it is to achieve a balance of medications for optimum results, I hesitate to share what is happening to my spouse and what is working for him because it is so far from the norm. Earlier I ventured to share what he is taking and the good results that he has had. Since it might not work for anyone else, in fact it might very well be dangerous, some of the responses made me feel that I sounded like an idiot. Consequently, I am very cautious in posting anything.

This unique place is my refuge. For you who share, I am so grateful. I rolled in the floor with laughter over many comments on the lengthy thread, "In the bathroom" and "out of the bathroom." Thank you for allowing me into your life.

Joy


Sun Mar 29, 2009 5:16 pm
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Joined: Sat Sep 22, 2007 5:53 pm
Posts: 90
Location: Texas
Post 
Joy, I am in the same boat as far as what is working for my husband medication-wise. My husband takes much more sinemet than most who post. We went to the VA neuropsychiatrist and he said that 10 mg of aricept may be aggravating my husband's tremors. So we cut it in half. He seemed to do better on 5 mg. So this is not the normal for most LBDers. What is normal? We just have to do the best that we can and I am sure that is what you are doing.
Lorraine


Sun Mar 29, 2009 9:09 pm
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Joined: Wed Dec 12, 2007 4:53 pm
Posts: 88
Location: Melbourne Beach, FL
Post 
I guess so. He's taking triple the recommended dose of Exelon and thriving (if one with LBD can thrive). He says his legs stop hurting and he walks better. I understand that this dosage would cause an impaction in most people but his movements have never been more regular. It stops the hallucinations but it doesn't stop the memory loss.

I'm grateful that he can now get in and out of bed, go to the bathroom without forgetting where it is, take a bath and dress himself. He lost those abilities before the Exelon was increased. I don't understand why, I'm just glad for the functioning.

Joy


Sun Mar 29, 2009 9:22 pm
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