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 A question for religious/spiritual persons with LBD 
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
Post A question for religious/spiritual persons with LBD
I am pondering something and would appreciate your thoughts on a spiritual matter. Not theological, doctrinal or whatnot. I'm not looking for Scripture quotes or platitudes just now. I just have a question about other peoples' experiences with LBD and spirituality, whatever your religion.

I have always had an intimate, personal relationship with the Divine, who I experience as always present and permeating everything. God has been as real to me as the air I breathe. But as my condition has degenerated, I feel in a physical way the loss of that intimacy. At times it is as though God is not present at all. I don't need reassurance that God is always with me whether I feel the Presence or not -- I know that. What I want to know is -- is this experience common to religious people with LBD?

Randy Graves


Tue Feb 27, 2007 12:19 am
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Joined: Mon Jun 05, 2006 3:29 pm
Posts: 93
Location: State College, PA
Post Spirituality and LBD
Randy,

I took the liberty of moving this topic into the Symptoms and Diagnosis room, as it seems to relate to symptoms over behavioral issues.

In my father's case, with LBD came a waxing and waning of insight, understanding and awareness. It changes with the wind, and may be the underlying issue with your perception of God's presence.

I hope that helps,
Angela


Tue Feb 27, 2007 9:08 am
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Joined: Tue Jun 27, 2006 12:43 am
Posts: 47
Location: Boulder, CO
Post Spirituallity
I am having a difficult time with that subject right now. My husband,
who is the one afflicted with LBD, suggested that I read the book
"Why Bad Things Happen to Good People". It has helped me sort
out some things during this phase of my life.

Fran


Wed Feb 28, 2007 1:30 am
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Joined: Fri Feb 16, 2007 6:13 pm
Posts: 102
Location: Fayetteville, AR
Post 
Fran,

Thank you so much for your response. I agree that "When Bad Things Happen to Good People," by Rabbi Harold Kushner, is an excellent book for people dealing with the question of suffering in light of an omnipotent, all-loving God. I read it in seminary while taking a course on the Book of Job . One of my conclusions in that course was that the human condition itself necessarily involves suffering and nobody can escape it, so therefore suffering is part of God's plan for us, though always for our good. The great religious traditions of the world all agree that one of our purposes is to seek the cause of our suffering, to understand it, and to see where it is leading us that we might transcend it or grow in wisdom, understanding, compassion, etc. It's pretty heavy theological stuff that I won't get into here in this forum (lest people begin to skip reading my posts entirely!).

My question has more to do with a possible symptom of LBD. I'm not really struggling with God. My question is not so much "why" but "what."
I feel as though I am losing some kind of emotional or even physical connection with God. I find myself unable to "enter into God's presence" as I once did. My way of being with God has changed or is changing, so that it seems to me that God is becoming less present, more removed, more of a concept than an experience.

I am wondering if this kind of detachment could be related to changes in my brain function as a part of the progress of LBD. Will there come a time when God is an alien concept to me? Have others with LBD had similar experiences?

Randy Graves


Wed Feb 28, 2007 3:01 pm
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post 
Randy,
I would like to offer my thoughts on your issue, (my Mom just passed with LBD). It seems LBD has adverse effects all personal and intimate relationships, spouse, children, friends, why not God? It must be so difficult that such a great source of comfort should fade. My Mom said concentration was a problem early on, like having to read a page of a book over and over before comprehending the written words. Prayer, medication and conversations with God require a certain level of cognative function and I saw Mom lose that in the early stage of this illness. So I'm thinking that surrendering your mind to prayer is more difficult to do and maintain for any length of time. Don't be discouraged, The Lord knows you are trying.
My prayers are with you.
Sallyann


Thu Mar 01, 2007 1:06 am
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Joined: Fri Feb 16, 2007 6:43 pm
Posts: 11
Location: Chico, Ca.
Post Awareness
Hi Randy.
My husband is in the final stages of his journey. He has been bed ridden now for almost three weeks, hasn't really eaten in two. He can barely communicate at all. But we are very grounded in our spirituality. My husband cannot be understood at all most of the time, but when I say our prayers, he is able to say them as well. We are Catholic and have been saying the rosary with him each day. Some times he chimes in just a bit. What I am saying is I think your awareness will not fade away. I truly believe that you will be on a higher level spiritually and you will be more open to him. I believe my husband's spirit is so open that the awareness of God's presence is more intense than before.

I hope in some small way this helps. God Bless.

Stephanie


Thu Mar 01, 2007 7:22 am
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post 
Stephanie,
Hi, I live in Auburn, and have alot of family in Chico. I havn't found many in Calif that have been dealing with this illness. Are there physicians in that area with expericence treating LBD? My Mom passed away 2/11/07, but I am still very interested in the illness and treatments. It was a very long sad road for us, but if this ends up being hereditary I will be ready. Happy to hear that your husband responds to prayer. My Mom stopped eating (4 days) and went into a comatose state very quickly. By the time we realized she was unable to respond, the Priest couldn't give her the sacrament and could only do an anointing. Very sad, and I felt terrible we hadn't called sooner. I think I was in denial about the end of this illness. ANYWAY...my thoughts and prayers are with you and your family. You sound like a wonderful and caring wife.
Sallyann


Thu Mar 01, 2007 11:36 pm
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Joined: Fri Feb 16, 2007 6:43 pm
Posts: 11
Location: Chico, Ca.
Post Drs in Chico
Honestly, I can't say for certain if our neurologist is well informed with LBD or not. I do know he is the best in the North State. His name is Dr. Joel Rothfeld. He is very highly regarded and known up here. He never diagnosed LBD. He just kept referring to parkinsonism with my husband. I started my research, found LBD and brought in my findings to him on our next visit. All he said was that he couldn't dismiss it, but couldn't prove it until death. He stated the treatment plan would not change regardless. My husband declined very quickly. He was diagnosed by another neurologist 3 years ago with parkinsons and today he is barely here. I know it will be any day that he will pass. I changed Drs because his treatment plan with my husband was so minimal and when we thought he had a stroke, that Doc didn't show up for 10 days to confirm a stroke. He said my husband had two. Well, Dr. Rothfeld after reviewing all the MRIs said he didn't think my husband had any strokes!
This web site has given me much more information than any doctor.


Fri Mar 02, 2007 2:26 am
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Dear Saricci,
I am so sorry you are dealing with end of life issues at this time and I do understand your frustration with being incorrectly Dx'ed, in our case it was the same the Depression came first then the PD next and then the LBD last but by the time that came so much damage had been done with medications, I am glad that you are releying on your faith, I know I did/do and it does help! My Prayers go with you and may your husband have a peaceful journey.


Fri Mar 02, 2007 10:49 am

Joined: Fri Feb 16, 2007 6:43 pm
Posts: 11
Location: Chico, Ca.
Post Thank You.
Thank you so much. I can't imagine going through this for 9 years like you did. It has only been 3 for us. I don't think we have an issue of the meds compounding the issue. He only took sinemet at an extremely low dose. We tried two times weaning him off and then tried aricept for less than one week and razadyne for only one week. Then back on the sinemet. The highest does he was ever on was three 25/100 per day. He also took two very small doses of blood pressure and I would say an averaged dose of his diabetes meds. He always kept his blood sugar under control, never needing insulin. It hasn't been until the hallucinations started a year ago that we tried risperdol for about two weeks. It made things worse and we stopped. We only tried seraquel after me reading about it through this site and he started that this December when he went on hospice. And that also was the lowest dose, only two (25mg) at bedtime and one in the am. I really can't say it did or didn't help. The only thing I can say is that with it the hallucinations were not as violent.
Thank You for your kind words. It helps when you know someone else REALLY understands what we go through.

Stephanie


Fri Mar 02, 2007 12:18 pm
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post 
Stephanie,
What is happening with your husbands Diabetes now that he is not eating? Is it causing a problem with that particular health issue?
Sallyann


Fri Mar 02, 2007 7:27 pm
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Post Re: Thank You.
It helps when you know someone else REALLY understands what we go through.

Stephanie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi Stephanie, Yes it does help when you make contact with others that do understand what it is like to walk a mile in your shoes, Yes 9 yrs was a long time but it was a slow steady decline, the last 3 yrs were rough and of course the last yr being the worst.We only used Risperdal for a very short time also but over the yrs while the depression was being treated, I couldn't even begin to tell you the different meds that were used,I have no idea of the possible damage that could have been done during that time but I have learned with this illness , self education is best.


Fri Mar 02, 2007 8:32 pm
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