View unanswered posts | View active topics It is currently Thu Nov 27, 2014 8:21 pm



Reply to topic  [ 17 posts ]  Go to page 1, 2  Next
 new at joining forum 
Author Message

Joined: Sun Dec 02, 2012 9:03 pm
Posts: 1
Post new at joining forum
I have just joined the LBD forum. My husband was diagnosed with AD a little over two years ago at the age of 63. He was symptomatic, however, before the age of 60. Our daughter had mentioned right after his diagnosis of AD to the Dr.s if it could possibly be LBD. This was not discussed very long and since I had not heard of it before, I quickly forgot about it. In an article last week, though, I read more on the symtoms of LBD and I realized that Richard has so many of them, including what I would call specific to LBD, such as being so soft spoken at times (unlike him before), and early on hallucinations like seeing things out of the blue. In the years of our marriage (44) he has, up until recently, had very vivid dreams and would sleep walk and talk almost every night. Now, he sleeps a lot both in the day and at night. He has spatial and depth perception problems. He also has mild tremors on his left side throughout the day.

Would someone please tell me if I'm on the right track here thinking it could be LBD? Thank you for your input!! I know how much we all appreciate having one another to bounce things off of.

Digi


Sun Dec 02, 2012 10:30 pm
Profile

Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: new at joining forum
Hi,
My husband has not officially been diagnosed yet but the neurologist thinks that is what it is. He has had same symptoms as your husband but he doesn't have the tremors in hands. Just dragging of right foot. He also is slow and soft spoke and cannot get his words out. Has had hallucinations twice. Everything you said seems to point to LBD from what I have read. My husband is also experiencing incontinence, I think. Wets floor and clothes everyday. Bought Depends already. He has had memory issues for a year. Parkinsonism has just started. Good Luck to both of us:)


Sun Dec 02, 2012 11:45 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new at joining forum
A warm welcome to you both! Hope you will find the support and information you need here. We're all in this together. God bless!

_________________
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.


Mon Dec 03, 2012 12:17 pm
Profile

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: new at joining forum
Welcome to the forums! I hope you find answers here, I know it has been a God send for me.
Ellen

_________________
Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Mon Dec 03, 2012 4:00 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: new at joining forum
I would like to welcome you both to the LBDA forums, I hope it can be a place of comfort and information for you both, if I can be of any help within the forum pease let me know !

_________________
Irene Selak


Mon Dec 03, 2012 7:39 pm
Profile WWW

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: new at joining forum
Welcome, and I'd recommend all newcomers here to read as many posts as you can on this forum, as well as any books and articles as you can find. One thing you'll notice about LBD is that (a) as of now, it can't REALLY be diagnosed while the person is alive. It's a matter of looking at changes, behaviors, cognitive functioning, etc. and making an educated guess. (b) there are lots of different symptoms among LBD patients, and some of our LOs have many in common and then some have additional symptoms too.

Because meds in LBD patients can have adverse affects or not be affective as they are with other dementias, it's important to try to get as accurate a diagnosis as you can. But, some of us never did get clear diagnoses for our LOs, so you have to just try to get them the best possible care in somewhat of a vacuum.

Good luck to all of you. Keep up your own strength and health during this difficult journey. 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.


Tue Dec 04, 2012 6:31 pm
Profile

Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: new at joining forum
We went for our 2nd visit to the neurologist yesterday after an MRI that she ordered. She said that he has had some mini strokes but they are in the central part of his brain and that his memory issues are coming from the sides. So, she is pretty sure it is Lewy. She has several patients with it. She prescribed the Excelon Patch and told me to change it everyday at the same time and to write the date on it so I will remember if I've changed it (gets monotonous after a while). She said this would not slow down the progression of the disease but would keep the memory at an even keel rather than a rapid slide. She is going to prescribe something for the Parkinsons symtoms after Christmas so that we won't stand the chance of a major upset during the holidays in case the med reacted unfavorably. She only prescribes one at a time so that she can see if the patient tolerates it well. She is a wonderful doctor and we were so fortunate to find her so quickly. She treats my husband with great patience and dignity. She is at Anderson Neurology at AmMed Health in Anderson, SC.


Fri Dec 14, 2012 6:01 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new at joining forum
How wonderful that you have found a good neurologist early on! That's a good part of the battle!

My husband has been on the Exelon patch since early 2007 and I know it helped immensely in the beginning. He actually showed a lot of cognitive improvement, even at the low level. Whether or not it's still effective is hard to determine but we're keeping him on it just in case. He had no side effects. Make sure you place the patch in a different spot [I used a diagram] each day and clean off the old site to remove any residual medication.

_________________
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 Dec 14, 2012 6:44 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: new at joining forum
Glad that you went back for the appointment and he is now DX'ed, Exelon is a good place to start with medication ,You are very close to me in Spartanburg !

_________________
Irene Selak


Fri Dec 14, 2012 6:55 pm
Profile WWW

Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: new at joining forum
Really. We might meet face-to-face someday for lunch:) Such a comfort know that there are other people out there that understand what you are talking about. My granddaddy McMillan was from Boiling Springs:)


Fri Dec 14, 2012 7:47 pm
Profile

Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: new at joining forum
And thanks, Mockturtle, for the info about cleaning the spot. Doc told me to rotate but I don't remember her saying to clean area. She did mention it was difficult to get the residue off and could cause irritation. I noticed today that he seemed more lucid, although he didn't know what day it was and left the oven on twice (I always check behind him as he still likes to cook). He seemed to have more energy. But then this afternoon, he got sluggish again and said he was very tired. Probably just a good morning. Thanks:)


Fri Dec 14, 2012 7:53 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: new at joining forum
Well you know where to find me, I have been here for years !

_________________
Irene Selak


Fri Dec 14, 2012 8:20 pm
Profile WWW

Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: new at joining forum
Hi there,
Pat (Mockturtle) gave me this link for a product that removes adhesive: http://www.amazon.com/Pdi-Adhesive-Remo ... B0015THZCQ. I got some (not cheap) and it works well. It smells of WD-40 so I'm pretty sure some of what is in WD-40 is in this product as well. Hasn't irritated his skin at all, you just have to rub gently. I did try the oil first and didn't have a lot of luck. Like you, I didn't know to clean the area of residual medication. He showers with the patch on so that won't do. But it makes sense, especially when the instructions say to wash your hands after handling the patch, which I do religiously. Another routine to establish. Welcome to this forum. The advice to read as much as you can and visit the forum (even though you may just read from time to time) often are good tips. Can't tell you how much it means to have this resource.
Blessings to you all,
Terri

_________________
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sat Dec 15, 2012 10:10 am
Profile

Joined: Sun Dec 02, 2012 8:57 pm
Posts: 20
Post Re: new at joining forum
Terri,
Thanks so much for the info. I will get some. I do read a little bit of the forum everyday. It has given me so much information. It really makes the "unknown" not quite so scary. It is so good to know that one is not alone in this.

Patsy


Sat Dec 15, 2012 10:29 am
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: new at joining forum
Welcome, Digi. You are in a good place to get questions answered and to feel support from folks who understand.

Patsy, I am not far from Spartanburg---just north in Rutherford County, NC. I remove my husband's Exelon patch residue just after shower time and use alcohol if it does not come off too easily. You are truly blessed to have found a good neurologist who understands what to do with LBD.....many do not.

Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Thu Dec 20, 2012 10:56 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 17 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr