a few questions

[Guest guest]

My Dad is at the same point as your Mom. I too am looking for what lays ahead. My dad can still communicate but is very very hard to understand!!

From what research I have done. Swallowing is the last to go, and my dad like your Mom, has to tell his brain and mouth to work then he eats fine. In the afternoons I can use a straw for drinking but by evening he is so low down we can't.

Watch for colds, flu, broken bones, and viruses. I have been told by the Dr. that that is what will take dad.

I will be looking for others out there to help us both with any information they can share.

thank You

[Guest guest]

One of the most difficult aspects of LBD is that there are no 'rules'. No two patients have the same symptoms, react the same

to medications, progress in the same way, or die the same way. We try and try to gather some concrete information about the

disease in an effort to at least exercise a little control over it.......but I think, as hard as it is, the sooner we can let go of this, the better off we will be. That said, my understanding is that it isn't so much how quickly the disease progresses at what you

describe as a pretty advanced stage, but what other illness (or accident) befalls him. It is a cruel disease! I think the best

thing we can do is to take extra good care of ourselves and to work at our own happiness and calmness. This way we won't

be adding to their discomfort and, instead, bring some peace to them.

Yes, easy for me to SAY. My husband is still in the early stages, but how well he handles his illness depends almost

completely on MY state of mind.

Mai-Liis

[Guest guest]

My mother died 1 year ago this month. My mom sounded like yours up

until late sept, she could walk with our help only, could eat finger

food herself but needed help with spoons and forks. Our biggest

problem came from a bed sore on her tail bone, I had no idea how bad

a bed sore could be! Be careful about sitting all day in the same

postion. The last day she walked was the day we had her bed sore

cleaned out, then she was in a hospital bed from there on. She gave

up at this point , she wouldnt walk and became very stiff. The

doctors strongly advised Hospice for us. My dad and myself were in

denial about her decline, the best thing we did was accept hospice.

They really forced me out of the denial and gave me the information

about dieing that I needed. My mother Hallucinated all the time , but

I believe she came out of " it " the last four days of her life. She

lost the ability to swallow, the last thing she ate was mint chip ice

cream (her favorite :-)that was wednesday on sunday she passed on, 10

minutes after I got to her home. I have few regrets in how we took

care of her , we kept her safe, clean ,warm and at home with us. I

know how lucky we were to be together, it wasnt easy.

[Guest guest]

Hi, Lindsey.

You don't sound any more confused than others of us, for sure. Or in denial. We are all looking for answers. I, too, wonder what "end stage" will be like for us. My husband's decline has been so slow that I suspect end stage will be very drawn out for us. Unless his awful posture causes collapse of the esophagus, in which case I fear he would asphyxiate.

Re 7 yrs average life expectancy or not: You may be thinking of something I wrote. I, too, thought it was 7 yrs - probably from time of dx. But I read something earlier this year indicating that this was initial thinking based on very small samples, that duration of the illness is more in line with Alzheimer's. Someone asked me for the source, but all I could recall was that it is probably on the Entrez PubMed site. The duration and course of the disease differ from person to person. General overall health should also be taken into account.

From what I read of others' experiences, sleeping most of the time and becoming almost totally unable to care for oneself does signify late stage. Also, "forgetting" how to swallow or chew, along with other activities that we take for granted.

Mine is not the "voice of experience" re end stage, although there have been down slides when I thought we might be entering it. I hope others who have been there will tell you a lot more.

As for walking, I'm with you. I think I would be inclined to encourage it, maybe in the AM as you are doing now, knowing that as fatigue sets in the wheelchair is there.

Cheryl

[Guest guest]

Greetings,

I have a few more questions. Thank you to all who responded about my vision inquiry. A.J. will not wear his glasses, so I have an appointment scheduled with his optometrist.

1. In general, Day 10, he is very, very floppy and lethargic. Have others seen this?

2. Stan, in reading the database, I saw that you noted hypotonia as a "soft" indicator. Why is this? A.J. is improving, but still hypotonic.

3. Stan, how much expressive language did Ethan have prior to Valtrex?

4. Finally, we have yet to see a rash or fever, just lethary, crankiness, etc. Have people seen this past Day 10?

Thanks in advance,

Tricia Hasbrook

A.J., 5.5 years

250 mg. Valtrex X3

100 mg. Diflucan

Probiotics

125 mg Zithromax

Efalex, CLO, OxyMag