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 I'm all flumoxed 
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: I'm all flumoxed
Lynn, I will check his BP the next time that happens. His DX is "dementa and hypertension". He is on one BP medication and did have episodes of syncope when we tried a different kind. Needless to say that one was was discontinued but remains on a medication that is used for BP and hypertrophy of the prostate.
Mary


Wed Sep 26, 2012 11:23 am
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: I'm all flumoxed
Good morning,
My husband has a grayish pallor sometimes too. It seems to happen when he is having a tough day, is very tired, and very lethargic.

Susieg


Wed Sep 26, 2012 11:44 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm all flumoxed
Mary, my husband had been on BP meds for years and years but with Lewy he became hypotensive. I had to convince the doctor to reduce, and then eliminate, his Micardis/HCTZ. He was much better after that and his skin 'pinked up' again. His BP has been fine, too.

_________________
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.


Wed Sep 26, 2012 11:47 am
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: I'm all flumoxed
I will watch that BP better. Wouldn't you think I would have thought of that being a retired RN, but when its your own, "makes a difference".

Yes Susieg, it does seem like it happens after a tough day, or tired or lethargic. All of these things happen more often now than before Lewy. Much more short of breath with activities also. This all takes me back to some of my previous posts about how I have had to say no to so many things and learn to appreciate the things we can do.
Mary


Wed Sep 26, 2012 12:08 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm all flumoxed
Another Parkinsonian feature of LBD is 'sick sinus syndrome', a heart rhythm problem.

_________________
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.


Wed Sep 26, 2012 12:11 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: I'm all flumoxed
I just went on line and checked out "sick sinus syndrom". My poor husband has had almost all of these symptons for at least five years before he was diagnosed with LBD. Bradycardia has been a big one. He has had several stress tests and every one says he is in really good physical condition because his heart rate is slow. (usually in the 40's) We had him tested for sleep apnea but they said that was negative even though I watched the HR monitor all night. When ever his HR dropped into the 40's the alarm went off but still they said that was normal. I can't tell you how many times he went to a doctor for these symptons and we were told not to worry. Once a doctor even told me "yeah, yeah, I've heard this before). Needless to say that was the last time we went to that doctor. Once I even brought him to one of these life line screening things and they did give us a report of possible arteriosclerosis. I even showed that to a doctor and the result was another neg stress test.
Now what do I do? Now he's 75 and dx with LBD and now agressive treatment falls into the ethical subject. When to treat and when to do pallative treatment? Thank you for that information.
Mary


Wed Sep 26, 2012 12:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm all flumoxed
My husband had a pacemaker implanted in 2008. At that time he did not have any symptoms of sick sinus syndrome, had a perfect report from his cardiologist at home before we went to AZ and was bullied into the placement by an aggressive cardio drumming up business while my husband was in the hospital for another illness. Whether it has served to stave off any bradycardic episodes since then, I can't say. Personally, I don't advise approving a pacer and wish we hadn't agreed [actually, my husband did not agree to one but I used my POA to make the decision].

It's so hard to know what measures to take. I often wonder how much misery my husband might have been spared had I not insisted on aggressive measures in medical treatment over the last several years. Because I am an RN, I know what can be done. Sometimes I wish I didn't know as much. :cry:

_________________
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.


Wed Sep 26, 2012 2:44 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: I'm all flumoxed
never heard of sick sinus syndrome... my goodness so much to watch for and be aware of.. im not an RN.. but there are times i feel like i could do ok on a test, if it had to do with lewy LOL

usually when he gets tired or overworked is when i notice it too... he will go out on good days and over do in the yard... and then he not only looks grey but he can walk the next day.. hes always been a workaholic so its almost impossible to get him to sit or rest... i try to go out and ask question or just talk to him to get him to rest.. some days that works, others not..

over the weekend.. i could tell he was feeling puny and looked grey and i took his bp.. it was 95 /55.. i brought him in and forced him to rest... the next day it was the same, so i didnt give his bp meds.... the following day it was 145/70.. he is all over the charts... we have him down from 80 mlg to 5mlg, over the last few years.. pretty soon it will be 0..

so many things to remember.. and think about.. so glad we have this wonderful source of info.. cant imagine where id be with out it...

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Sep 26, 2012 5:27 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: I'm all flumoxed
Cindi, your husband sounds so much like mine. Work has always been his entertainment. Nowdays there is so little he can do by himself unless I am with him. I do try to encourage him with what ever he can do. Today we went grocery shopping together. He loves to grocery shop as long as we go to the same store all the time. He unloads all the groceries from the cart and again puts them in the trunk of the car. When we get home he will not let me take them out of the car. Thats his job.
It's just amazing how many of us on this forum seem to be at this stage. Our daughter is an RN on a cardiac unit and we had a good discussion today about a pace makers. She didn't advocate it either especially since her dad (my husband) has said he doesn't ever want to go to the hospital again. Its hard being a retired RN and knowing a little bit about everything but not being an expert on anything. Thanks again for every one on this forum. You have all been so helpful.
Mary


Wed Sep 26, 2012 9:31 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: I'm all flumoxed
When we went to Mom's cardiologist last week for her follow up on her stress test and ultrasound, we were told that her ejection faction is now at 35% (which means basically that her heart is working at 35% of what it should be), and we might want to think about a pacemaker. She also has atrial fib and CHF. The doctor kept looking at me funny as I shook my head at his suggestion of the pacemaker and having an angiogram. He finally asked me if she was a DNR and I said yes, so he noted that in her chart, and hopefully we won't be asked about these interventions again. It's hard though, even though I know that these are my mom's wishes, my natural inclination is to do everything I can to keep her here with us as long as possible.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Sep 27, 2012 6:20 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm all flumoxed
empritchard wrote:
When we went to Mom's cardiologist last week for her follow up on her stress test and ultrasound, we were told that her ejection faction is now at 35% (which means basically that her heart is working at 35% of what it should be), and we might want to think about a pacemaker. She also has atrial fib and CHF. The doctor kept looking at me funny as I shook my head at his suggestion of the pacemaker and having an angiogram. He finally asked me if she was a DNR and I said yes, so he noted that in her chart, and hopefully we won't be asked about these interventions again. It's hard though, even though I know that these are my mom's wishes, my natural inclination is to do everything I can to keep her here with us as long as possible.

When I took Derek in for his annual pacemaker check, I also indicated to the doctor that we would not be replacing it even if it was not functioning properly. He also looked at me rather oddly. I'm getting used to that. :roll:

_________________
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.


Thu Sep 27, 2012 6:56 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: I'm all flumoxed
This is all about balancing quality of life vs. quantity, and if I ever have dementia (and it's now on both my mom's and dad's sides of the family) I will do everything I can to make sure that my family goes for quality of life and not quantity. Seeing my poor dad suffer so much in his last 18 months was beyond description and I wouldn't wish that on anyone. If anyone had suggested anything like pacemaker, feeding tube, whatever, I would have thought they'd completely lost their minds. I just couldn't imagine prolonging his suffering and want my family to do the same for me. We treat our pets more humanely sometimes, don't we? This whole thing isn't easy, that's for sure, but seeing someone suffer for days, months, years is not an alternative I'd want to experience again. Peace, 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.


Thu Sep 27, 2012 8:29 pm
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