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 Hi my name is Elizabeth, I'm new here. 
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Hi my name is Elizabeth, I'm new here.
My husband of almost 39 years has LBD with Parkinsonian features. He was finally diagnosed in November 2011. His symptoms were there for a few years and he lost his job in early 2009. I had him to Doctor after Doctor and he went undiagnosed. I thought it was the new blood pressure meds they put him on because that is when he started hallucinating, I was wrong.

He is now in a hospital bed with caregivers during the day while I work.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Fri Jan 18, 2013 10:36 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Hi my name is Elizabeth, I'm new here.
A warm welcome, Elizabeth! It sounds like your husband is not very old. How sad that his disease has progressed so quickly. Hugs and blessings to you both! Glad you found us!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jan 18, 2013 11:30 am
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Joined: Thu Jan 17, 2013 9:31 pm
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Post Re: Hi my name is Elizabeth, I'm new here.
I am 59 and Gary is 64. The Doctors didn't know what was wrong with him and gave in Haldol and Ativan when in the hospital and he went into cardiac and respiratory arrest. Was in a coma for 6 weeks and then 3 months of rehab. It was called Neoroleptic Malignant Syndrome. His LBD was accelerated because of it. Somedays he is better than others. He has been in a hospital bed since the day after Thanksgiving, I have to feed him and he is now completely incontinent. I miss my husband.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Fri Jan 18, 2013 12:06 pm
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: Hi my name is Elizabeth, I'm new here.
I too am glad I found this. Most people don't know anything about this horrible disease. It's nice to communicate to people that understand.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Fri Jan 18, 2013 12:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Hi my name is Elizabeth, I'm new here.
The drug thing is really, really scary! It's one thing the LBDA tries to emphasize in educational outreaches because the wrong drug can do so much harm! My husband also had NMS from being given Risperdal but was able to recover to baseline after removing the drug. I'm the only one who figured it out [after reading considerable research online]--not the doctors. That was before I found this wonderful forum, where I've learned so much.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jan 18, 2013 12:58 pm
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: Hi my name is Elizabeth, I'm new here.
Me too, my brother and I started looking up all of his symptoms and asked the Doctors to stop the meds, but they continued and I finally told them (neurologists) that it could be Lewy Body. I am the one that diagnosed and another Neurologist confirmed, by then the damage was done.

_________________
Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Fri Jan 18, 2013 1:37 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Hi my name is Elizabeth, I'm new here.
Yes, the drug thing is really scary. My mother had dramatically adverse reactions to both Haldol and Abilify. The Haldol reaction was immediate and scary but fortunately with my niece's input (she's a nurse practitioner) my mother had only one dose and there was no permanent effect. She was on the Abilify longer and unfortunately did not return to baseline after it was withdrawn, but it was the catalyst for her finally getting an accurate diagnosis of LBD so in a perverse way it served a purpose. I have read and learned a lot since then and am very much on guard about any medication changes. Anyway, it drives me crazy when doctors won't listen to family. Elizabeth, I am so sorry to hear about what the drugs did to your husband, and welcome to the forum.

Julianne


Fri Jan 18, 2013 4:14 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Hi my name is Elizabeth, I'm new here.
Welcome Elizabeth and I am so sorry to hear your story. Please keep up your own strength and health while you are on this journey. Sending a big hug, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 18, 2013 6:25 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 200
Post Re: What if
I have a hypothetical question. What if LO would suffer sudden cardiac arrest?
This question bothers me often. LO has been dx with LBD for four years now, but I think its been more like 5-6 years. He appears to have a strong body and he still functions well with my help as he is not able to problem solve or make decisions. We are still able to travel by plane to our apartment in Florida. In fact thats where we are now to escape the hard winters up north. We try to walk each day, however I notice he appears to get short of breath more often. We have POA for each other and our daughter has durable POA for us. We both agree that neither of us wants advanced life support in the event of a hospitalization. However, what would I do if he suffered sudden cardiac arrest at home? (His father did and the ambulance was called and CPR began). I think the EMS is obligated to initiate CPR, but this is exactly what neither one of us wants. Would I call police, doctor, or EMS. I am further afraid, I may panic and start CPR myself as I had been certified in CPR yearly for my job when I was working. This is not a pleasant subject but one I need to ask. I really don't want to lose him, however I want to do what is best for him.
Mary


Sat Jan 19, 2013 3:22 pm
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Joined: Wed Apr 11, 2012 9:32 pm
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Post Re: Hi my name is Elizabeth, I'm new here.
Mary. Yes that is a concern I have also had. Norris sounds alot like the stage where your husband is, but it has taken some significant cognitive slides lately. We can still walk almost 1/2 mile daily, but he has been using his walker in the morning. We also have medical directives and POA's, and he doesn't want any assistance/help if he does have cardiac arrest. He doesn't even want anyone to feed him if he cannot feed himself. Thankfully, we are not at that stage.

To respond to your concern, my father who passed away at 97 in his sleep, was a former engineer who had to be in control of every aspect of his life, and his death. (He had no illnesses). But he had spoken to the EMT's, doctors, etc. and had notices of DNR posted all around his apartment, wore a bracelet that you could get in Virginia that said DNR. The EMT's told him that if they showed up to his apartment and found him unresponsive --- if they saw the DNR they would respect that. But often the person is alone and the DNR is not available or apparent.

These are discussions that my husband and I have had. Thankfully we did, because he is beyond those discussions cognitively. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Sat Jan 19, 2013 3:47 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Hi my name is Elizabeth, I'm new here.
Mary, I know just what you mean about panicking and starting CPR. If my LO codes at the SNF, I hope I'm not there at the time because I just know how I would react. We have a DNR [do not resuscitate] order signed by his physician. It is part of a form sometimes called a POLST [Physician's Orders for Life Sustaining Treatment] which also includes other types of interventions. Some we opted for and some we did not. It's an essential document, IMHO, whether your LO is in a facility or at home. Perhaps you should discuss this with his physician. If you have medical power of attorney, you can sign it, along with the physician. My husband signed his first one but was unable later and now I sign them. The SNF requires them to be renewed annually. But it you have an order at home, it should be good indefinitely and should be posted on the refrigerator and pointed out to the paramedics if they should be called. Important topic!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 19, 2013 3:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Hi my name is Elizabeth, I'm new here.
This can vary from state to state and from one ambulance crew to another. Generically, this is how I understand the situation after talking with doctors and EMTs-

- if you call an ambulance, it is the job of the crew to do everything in their power to SAVE the person's life. They do not consider what the quality of life will be if they "save" the person, they just respond to the call and do everything in their power to keep the person hanging on.

- if there are obvious signs all over the place, then the EMTs MAY honor those, they might not.

- despite both of my parents having ADs and conversations with family and friends and medical people, I kept having to remind the staff at my dad's ALF that he is a DNR. I asked them NOT to call for an ambulance if it appeared he was having a stroke, heart attack, etc. He already had the documents but wasn't able to speak much for himself towards the end. Was it easy? No, but I knew what he wanted and I had the paperwork to back up my insistence that his wishes be followed. Also, he was so debilitated, so miserable emotionally and physically that he had no quality of life. I would never have wanted him to continue on like that indefinitely. We kept hoping he would go peacefully in the night and not have his misery prolonged. This is not a disease that gets better and can go away.

- my mother was "resuscitated" and on advanced life support for 4 days. This was NOT what she wanted. She was without 02 for at least 20 - 30 min. before the EMTs got there. Her AD was not followed despite the fact that she'd just been released from the hospital a few days earlier and they had a brand newly signed AD there in her files. EMTs and ER people apparently don't look at that stuff. They are there to save lives, no matter what that means for later on.

So be careful, be an advocate for what your LO wants, and make sure that for yourself you have an AD and make your wishes absolutely clear to those closest to you. All the best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Jan 19, 2013 6:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Hi my name is Elizabeth, I'm new here.
Good points, Lynn. Remember, though, that Advanced Directives are not the same as a DNR order. A DNR order must be signed by a physician while an AD does not. Also, a DNR/POLST deals with very specific interventions, e.g., CPR, chemical resuscitation, antibiotics, tube feedings, etc.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 19, 2013 6:15 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 200
Post Re: Hi my name is Elizabeth, I'm new here.
Thanks every one. Lots of really good information. I will pray that when and if that situation arrives, I will get my orders from higher up powers because I still don't know what I would do. I guess a lot depends on how he is doing at that moment if the situation should happen. The cognition fluctuates from day to day and from one time of the day to the other. Early mornings he needs some help, but after breakfast and coffee, he functions fair. Cognition slides as the day goes on and by 8PM, he is very tired and sometimes confused, with occasional agitation. I know I have to just let him go to bed and our day is done. I don't know if any one else has this or not but one thing that wakes his brain is music. He really can't follow story lines if we watch a movie but loves the music. That window of alertness seems to be getting smaller. Thank you again. It's so nice to be able to ask such an uncomfortable question as this and know someone would understand.
Mary


Sat Jan 19, 2013 6:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Hi my name is Elizabeth, I'm new here.
Yes, Mary, we all either are or have struggled with the same questions. That's what's so great about this wonderful community of support. I hope you all have a peaceful day, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Jan 20, 2013 1:34 pm
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