Re: Re: New to the Group - elaine

[Guest guest]

elaine

thank you for your kind comments, i try to be informative as best as i can, my

communication skills are slowing diminshing esp in a crowd situation, i find it

didffiuclt to follow teh converstions in a crowd, and tend to drift in to my own

little world. i nknow my writing is getting worse although i chat with several

people at nite try8ing to keep up my typing skills and communication. i am ablet

to talk onm teh phone very well though i do lose train of thought in a flash if

i am interrupted for even a second, but usually i joke about it.  and try to

remember what i just forgot. 

if i can help at all please do not hesitae to ask hugs. sharon

Daughter of Leonard whom was diagnosed in May 2004 and died of complicatons

*blood pressure started dropping and wouldn't recover* on Sept 25, 2005. He had

bad case of Dr Jekyl/Mr Hyde scenarios. He was showing hallucinations and

falling issues since prior to 1994. We moved in to take care of him Jan 19, 2003

and still live in his house. And in feb 2009, i have been diagonosed with 99%

probability of lbd.

Subject: Re: New to the Group - Mom Just Given LBD diagnosis

To: LBDcaregivers

Date: Saturday, April 3, 2010, 7:28 AM

 

Dear K and Sharon

Welcome to the group K. I'm a newcomer myself who has been 'listening in'

for a while - but your letter also resonated with what has been happening

with my husband Jim, who is nearly 82.

Thank you for your comments Sharon. Your insights are really helpful. I'm

really sorry to hear that you have LBD as well as your dad. I hope you have

someone to care for you in the same way you cared for your dad.

K, we have had great success with fludrocortisone in keeping Jim's blood

pressure from dropping too low. He is now on 0.1 mg of fludrocortisone

twice a day. This was gradually increased to this level.

He also takes 100 mg amiodarone for his atrial fibrillation; 6.25 mg

carvedilol twice a day; 10 mg atavorstatin (Lipitor) once a day and 75 mg

clopidogrel once a day for other heart problems.

He takes 100 mg sertraline (Zoloft) once a day for depression.

He doesn't take anything for his tremor but as this is starting to interfere

with his ability to manage a fork or spoon, we may have to investigate

something for this.

Jim had three trips to hospital last year: one for fainting due to low blood

pressure; one for atrial fibrillation and the last for confusion, delirium

and hallucinations. This last trip resulted in his diagnosis changing from

multiple system atrophy to LBD.

As Sharon has suggested, hydration seems to be an important factor in

preventing low blood pressure. Jim won't drink water, but he will eat

grapes, oranges and pears and watermelon that I cut up into small pieces.

He also likes a drink I make by blending watermelon, banana, and any other

fruit - it makes a thick smoothie and I am able to sneak in a bit of

Metamucil to help stop constipation.

Jim has had REM sleep disturbance for quite a few years before all these

symptoms developed - fighting in his sleep, kicking, punching but I have

only been punched once J I use a pillow as a buffer between us when he

starts dreaming!

Jim also lost his sense of smell many years ago.

His mother was an alcoholic but he doesn't drink any alcohol, though he was

a smoker but stopped 20 years ago.

He is always hearing voices of people talking in the street outside, or

music playing, or seeing children or animals in the bedroom.

Jim will spend all day in bed if he had the choice.

I try to tempt him with a walk at a nearby beach or with a trip to our local

coffee shop. He has no motivation to do anything but is able to be cajoled

into doing something most of the time - even if it is just to go and sit in

the sun.

He has always had a good sense of humour, and I find that if I can turn a

bad situation into something funny, it often helps.

I find that playing music is a great help and is soothing - especially music

from Scotland, which is where he was born and grew up.

He loves looking at old photos too.

Last weekend I took him to Canberra - a four hour drive from where we live

in Sydney. This trip, while not a complete disaster, did prove to me that

moving away from home was taking him out of his comfort zone. The hotel room

just wasn't 'home'. He developed bowel incontinence and was more confused

than usual. (Hint - always have a packet of Depends in the car together with

baby wipes and plastic garbage bags!)

Jim wanted to see a friend he hadn't been in touch with for more than 10

years and this was a success. While with his friend, Jim was much better. He

listened to his friend talking though he did not engage in conversation.

Perhaps the stress of catching up with his friend caused the other

difficulties, but I must admit I did come home and think " I won't do that

again in a hurry " .

K, I find that it is good to be informed, but then I pull back and find I am

getting too much information! While wanting to know what's ahead, I also

find it easier to just focus on the 'here and now' and try not to become

fearful of what may be awaiting us down the track!

I certainly find the practical hints from the group to be very helpful.

Thank you everyone!

Warmest wishes

Elaine from Sydney, Australia