Re: Dad just diagnosed with LBD

[Guest guest]

,

This is a horrible disease. My Mom was diagnosed in June. But with the

diagnosis, it put the pieces together with the symptoms she has been having.

I read the release about Ebixa. I sent an email to Professor Reisberg.

Let's see if I get an answer. I just asked if there is potential use in

patient's with LBD.

This group is great. They have a lot to share.

Mariea

[Guest guest]

Thanks for the feedback Mariea. I hope this Ebixa is something that we

can try. Please keep me posted on what you hear.

mls672@... wrote:

> ,

> This is a horrible disease. My Mom was diagnosed in June. But with the

> diagnosis, it put the pieces together with the symptoms she has been

> having.

> I read the release about Ebixa. I sent an email to Professor Reisberg.

> Let's see if I get an answer. I just asked if there is potential use in

> patient's with LBD.

> This group is great. They have a lot to share.

> Mariea

>

>

>

[Guest guest]

Welcome to the group. My dad also struggles with LBD. He just turned

65 the end of July. He was diagnosed almost 5 years ago. So glad you

found this group and am looking forward to seeing more posts from you.

You will be added to my ever so growing list of prayers.

Sandie

Des Moines, IA

[Guest guest]

,

My welcome to this site. LBD is truly a devastating disease and any new

drugs that will work would be a Godsend. Some of us are caring for LOs who

continue to do well on Aricept and Exelon, but if something else will also

help, all the better. I think we in the US are sometimes a bit behind the

experiences of other countries. At least, our FDA says " wait, wait, wait "

until we ensure there is " nothing " wrong with this new med. Some of us would

rather take our chances . . .

It is very easy for me to understand that you and your siblings would chalk

your dad's problems up to hearing deficit. LBD patients have an incredible

ability to deflect attention from the REAL problem, some for many years down

the road. Your mom is going to need all the support you and sibs can

provide. The disease is devastating, and until really effective drugs come

along, the best we can hope for is an amelioration of the symptoms.

How to prepare yourselves? You have taken the first step by acknowledging

this monster and recognizing that it is a dreadful disease. The kind of

assistance your dad will need will depend on HIS progression with the

disease. It is very individual. My husband has benefited well from Aricept

and Sinemet, and continues to benefit from PT/OT, massage therapy, and a

special needs exercise program - the latter all to help with the PD features.

Whether or not a nursing home will be in your dad's future will depend on

your family's ability and willingness to keep him at home, and his

deterioration and for how long. Nursing home care is expensive and

emotionally painful, and they are frequently unfamiliar with LBD and the care

required that differs from Alzheimer's and other forms of dementia. You need

at this time to also be looking out for your mother. All too often the

welfare of the primary caregiver is overlooked. If she should lose her

ability to care for/oversee his care, he will probably wind up in a nursing

home anyway. Things to ponder . . .

Best to you and your family, while looking forward to hearing more from you.

Cheryl (caring for 72 yo husband who is doing remarkably better than expected)

[Guest guest]

,

Hi and welcome. My Mom is 88 and has LBD, I think. Her diagnosis is

Alzheimers and I think they are wrong. She was with me for 3 years and

last September after a 20 day hospital stay, she went into a nh.

The book that is really helpful is " The 36 Hour Day. " It has all sorts

of help for anyone dealing with dementia.

Donna

If you drink a diet soda with a candy bar, the calories in the candy bar

are canceled out by the diet soda.

[Guest guest]

Hi Donna,

I just ordered " The 36 Hour Day " from Amazon.com. I'll have it in a few

days. Thanks for the tip. How is the adjustment been into the nh? It

must have been a very difficult decision. 20 years ago when I was in

college, my Mom's mom lived with us. She had AD. After a few years, my

Mom was so stressed out that we had to call an ambulance because she had

such severe palpitations. We thought my 40 something mother was having a

heart attack. Grandma went into a nh pretty soon after that. Mom felt

unbelievably guilty over putting her mom in a nh. Now I am starting to

relate. It's one thing to see a grandparent go into a nh. It seems to

hit closer to home when it's a parent. And even closer when it's a

spouse. I don't look forward to any of these scenarios. I hope that you

are coping well and that you have found some peace.

mido101@... wrote:

> ,

>

> Hi and welcome. My Mom is 88 and has LBD, I think. Her diagnosis is

> Alzheimers and I think they are wrong. She was with me for 3 years and

> last September after a 20 day hospital stay, she went into a nh.

>

> The book that is really helpful is " The 36 Hour Day. " It has all sorts

> of help for anyone dealing with dementia.

>

> Donna

>

> If you drink a diet soda with a candy bar, the calories in the candy bar

> are canceled out by the diet soda.

>

>

>

[Guest guest]

I can relate to the grandparent nh scenario. I watched my mom place her

mom in a nh...my wonderful " gram " . It was my mom and her brothers

duties to go through the caregiving and knowledge it took to live out

grams stay. Now, I can honestly say I know what she went through. She

passed away 18 1/2 yrs ago and it is now my responsibility to go through

the motions of nh living. I have a brother, who is 2 yrs older than I,

but he doesn't help much nor is he involved. I must say though, without

my dad, I wouldn't be here on earth, so I owe him my life and am

committed to making the best of his life...where ever he is living.

Sandie

Des Moines, IA

[Guest guest]

Your Dad's very fortunate to have a you for a daughter.

sanclown@... wrote:

>

> I can relate to the grandparent nh scenario. I watched my mom place her

> mom in a nh...my wonderful " gram " . It was my mom and her brothers

> duties to go through the caregiving and knowledge it took to live out

> grams stay. Now, I can honestly say I know what she went through. She

> passed away 18 1/2 yrs ago and it is now my responsibility to go through

> the motions of nh living. I have a brother, who is 2 yrs older than I,

> but he doesn't help much nor is he involved. I must say though, without

> my dad, I wouldn't be here on earth, so I owe him my life and am

> committed to making the best of his life...where ever he is living.

> Sandie

> Des Moines, IA

>

>

>

[Guest guest]

Hi . I am sorry to hear about your Dad. My MIL (mother-in-law) has

this disease and I can share with you a few things that have helped us care

for her. Make sure you have a POA (power of attorney) in place prior to him

progressing. It helps to name a " second " as well. This will make sure if

and when he becomes incapacitated, you (or whomever named on the POA) can

keep his care going, arrange finances, and make other health related

decisions. Second, make sure your doctors are all on the same page, and

make sure you all work together to keep up on his progress. This disease is

like nothing I have ever seen. You will have great days, even weeks, and

then, with no notice, a downward turn will come and can last 1 hour, or 2

weeks. I have come to expect anything, and always hope for the best. 3rd,

I would start looking at facilities and decide on one you like, so when the

time comes, you know where he will be placed. You may have to get him on a

waiting list. My MIL is at a group home close to home. She is well cared

for and someone is there 24 hours a day. They take good care of her and

there is only 5 patients there. My FIL does not have the resources to have

her at home. Whether or not your father needs a home is something only your

family and medical providers can really answer. With LBD, they tend to wake

often in the night, so you would want to make sure your home is safe, and

that someone can help him with whatever he may need. Short term memory

tends to go fast. Sometimes, hallucinations and delusions are scary, and

you will want to make sure you know how to handle your father if/when he

experiences this. Getting on the right medications is so imperative. What

I noticed most besides the short term memory loss, is how much this disease

took away from my MIL's personality. My MIL seems to live in her past a

lot. Not sure if all LBD patients do this.

I wish you the best of luck with things. Keep us posted.

Take care,

Dad just diagnosed with LBD

Hi there,

I never heard of Lewy Body Dimentia until last Monday. My Dad (almost 73

yrs of age), has been suffering from parkinson's symptoms, shuffling,

tremors, rigidity, etc. for almost 2 years. Mom has been complaining

that Dad has been " loosing it " for about 4 or 5 years now. Since Dad

lost his hearing at age 40, we all chalked it up to lack of interaction,

retirement, age, etc. Mom has been bringing Dad to doctors for about a

year now. After seeing several doctors, finally, a neurologist at the

Cleveland Clinic finally put a name to this disease...LBD. Since then, I

have been surfing the web in an attempt to learn as much as I can. From

what I've read, I'm convinced that the doctor has his diagnosis correct.

(Although I'm only aware of a couple of hallucinations.....However, Dad

would have to share that info with us for us to know. And he's acting a

little paranoid lately.)

What I have read about this disease has been pretty discouraging. My

siblings and I would like to help Mom prepare for the worst, hope for

the best, and minimize any potential devastation. We saw our grandmother

suffer from alzheimer's 20 years ago. Am I right to assume that Dad will

probably wind up in a home? Is there something we should do now to

prepare emotionally, physically, financially for later? Any advice or

resources would be greatly appreciated.

Also, I stumbled across an alzheimer's drug not yet available in this

country. It has been approved by our FDA but it will not be manufactured

until 2003. A friend of mine has a relative who is on it. They have it

shipped in from Germany. It is called Memantine, also known as Ebixa,

although it will soon be marketed under a different name...Axura 10 mg.

My friend wrote in an e-mail to me:

" Memantine does not only reduce the deterioration of the cells, it actually

rejenerates them so that the patient receives approximately 80% of their

memory back. If it works, this is really amazing for those who are early

sufferers. Her doctor has her on this prescription in addition to one

of these three Excelon, Reminyl or Aricept. (Her mom is on aricept because

she has less side affects from it. But her doctor likes Excelon the best).

These three drugs help to stop the affects of the disease where the new drug

gives back what has already been lost. "

At first, my friend's e-mail sounded too good to be true. Why doesn't

everyone know about this? But then I started doing a little research and

found that there is something to this info. The following link is a

press release from the Alzheimers Association 8th International

Conference on Alzheimers Disease and Related Disorders held in Stockholm

July 20-25, 2002. It appears that this is cutting edge stuff. Has

anybody heard about this? Can it be used for LBD?

http://www.lundbeck.com/investor/releases/ReleaseDetails/Release_73_EN.asp

Any feedback would be most appreciated.

[Guest guest]

Thank you for the positive words...I appreciate them. Please keep us

posted!!

Sandie

Des Moines, IA