Re: //New to this list

[Guest guest]

Welcome , As you have seen some of us have been here since the early

years of 2000. I have been here since 2003, but some  have been here since 2002

and many are new as you are. We are like family here, so you will fit right in

and that is why it seems like we all know each other pretty well. Feel free to

ask any questions or vent or laugh. We all need to release our stresses.

When we all look back, we can see that the progression of LBD has been for

sometime, we just didn't realize what we were seeing at the time in the

beginning. Our LOs (Loved Ones) are good at covering up what is happening to

them. Looking back for me in the very early beginning of LBD, I didn't realize

that my husband's obsessive compulsive behaviors were stemming from him starting

to be forgetful, but I hadn't noticed him being forgetful yet. He didn't trust

himself and he knew he was becoming forgetful, so he had me check if the front

door was locked over and over again or the windows were closed over and over. It

was annoying and he hadn't been like that before and now looking back on it, I

understand where that was coming from. He would practice writing notes all over

the margins of the newspaper. He told me he was leaving love notes to me, but it

was really him noticing that his handwriting was getting smaller and smaller and

harder for him to

write.

, our LOs are so different in their abilities. There are no stages with

LBD, we call them phases, because there is no pattern. Some LOs may show

symptoms in the earlier phases that others show in the later phases.

LBD is a spectrum of many different variations

http://www.lbda.org/category/3437 & cfid=367606 & cftoken=83169841/what-is-lbd.htm

All have similar symptoms. PDD is Parkinson's Disease Dementia, which is LBD

also

and that is what my husband has. He was dx with Parkinson's first and several

years later LBD appeared. DLB is where dementia appears first and Parkinson's

may or may not appear in a year or two following the dementia.

LBD showed up in my husband in 2000, but it was not clinically diagnosed until

2003, mostly because most doctors had not heard of it. It is getting better, but

there are still doctors not knowledgable about LBD. My husband is in a nh and

has been for a little over 2 years. He lost his ability to walk with a

walker when he went into the nh, once they no longer are active on their feet,

they lose the ability to walk or stand, but I noticed this early and requested

that my husband maintain his weight bearing and I have done resistant exercises

with him pushing against my hands with his feet and helping him do range of

motion with his legs while laying on the bed and using a hand massager to keep

his leg muscles stimulated, so he can keep the weight bearing up. I have asked

the CNAs to stand him up and put him to bed and not lift him to bed. He can hold

onto a stable object like a handicap bar and pull himself up to a stand and

pivot around to sit on a

toilet or I can wheel him up to the car and he can hold onto the car and pull

to a stand and get in the car for a ride. He has done well at maintaining his

weight bearing. If he did not have this I could not get him in a car or take him

out. There are some here that are bedridden too. If my husband is hospitalized

for 3 days or more, he loses his muscle tone, so I have to exercise his legs and

get them back to where they were, so he can maintain weight bearing. They can

lose the ability to use their legs really fast, so that is how I keep my husband

able to stand with weight bearing and how I can take him places, but he is

not mobile to move about on his own. If I didn't keep the leg exercises up, he

would be bedridden.

On this site, you are important to us also. Please make sure you get respite and

take care of yourself. Do you have help with your husband? Do you have a Durable

Power of Attorney for your husband. These things are a must!

Take Care...................Jan

New to this list

Hello everyone. I have just found this list, and hope to find some

answers amongst the wealth you must all have. I have read almost

everything I can find on the net about DLB, and I've read some of your

messgaes.  You all seem to know each other pretty well, so please have

a little patience with me.  My 70 yr. old husband has recently been

diagnosed, although retrospect makes me think he has had it for some

time.  We seem to be on a plateau of almost normality at the moment,

although he is bedridden, and I cannot manage to give him a shower or

bath on  my own, he just cannot sustain his weight, and his shuffle is

almost unmanageable. We do have a hospital type bed, and this is a

great boon. I am able to ensure that he remains upright except when he

is sleeping, when I lower it a little. I've read so much about

sufferers being able to be dressed, and move about their homes, even

attending functions of one kind or another, but this is so far removed

from what my husband is able to do.  Are there people out there who

are also bedridden?  If not, how did you manage to get them mobile?

elizabeth

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Welcome to LBDcaregivers.