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

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:)

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!

Welcome to the forums! I hope you find answers here, I know it has been a God send for me.
Ellen

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 !

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

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.

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.

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 !

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:)

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:)

Well you know where to find me, I have been here for years !

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,
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

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