By tomorrow you will have made two important steps to regaining control of your life. Really, that's three important steps -- asking for and paying attention to the advice of all the good people on this forum counts, too. Congratulations. Please continue to keep us posted.

Garnet

amba12,

Run to the Va immediately. Renata told me about the benefits and while ours are limited ... my LO served in Europe but during non wartime...we still get many benefits. They provide a helper 2 hrs a day, 3 days a week. A primary care physician, a neurologist, a falls clinic, a geriatric social work, psychologist, psychiatrist and a physical therapist. All of the doctors are wonderful! The neurologist was so educated on LBD I was shocked! They provided a transport chair, shower chair, walker, canes, etc. etc. We do have to pay a co pay for the helper but the physical aids were all no charge. We were told we do not qualify for a pension but the above benefits are extremely helpful. Now that my hubby is on hospice they still provide the helper to me...she does laundry and helps me with whatever I need done.
Its been a huge help for me. Thanks again Renata.
And for those of you who think hospice is only the last 6 months...the doctor told me he can "renew" the prescription for hospice as long as he feels end of life is imminent.
Good luck to you and all caregivers.

I appreciate the encouragement. The VA is my next move, because I can't believe that my husband will qualify for hospice. He's more "with it" since starting Namenda. Unlike some Lewy patients, his physical disability progressed ahead of his dementia anyway (which was why his initial diagnosis was "possible MSA"). He can still eat and drink (with Thick-it) and communicate, though what he communicates does not always make sense or relate to the here and now. He is still interested in being taken out of the house although his interaction with the world is much reduced and simplified. In short, he is helpless, incontinent, but not remotely terminal.

Annie,
If your husband had parkinsonism for at least a year and then developed dementia symptoms, this is called Parkinson's Disease Dementia. It is a type of Lewy Body Dementia.
Robin

Hi Robin -- it's hard to say. He never had typical Parkinsonism with rigidity and tremors. He had bradykinesia, balance problems, and falls; leaned forward when he walked. ED was early. The very first symptoms of dementia began to appear simultaneously or soon after, though only when he was fatigued or under stress. On a trip to visit a school that had used his book, he had weird trouble signing his name correctly. http://donbas.com/diary/oregon.html On our second trip back to the place where he'd been a prisoner, now in Ukraine, he asked me if we were on Queens Boulevard (on the way in from the airport in New York). http://donbas.com/diary/index.html I chalked it up to post-traumatic stress. All this was around 2000. He'd had two knee replacement surgeries and although they had been successful, he was beginning to have trouble walking upright, picking his feet up, and keeping his balance.

After reading Robin's note in the most recent Shy-Drager e-mail, I wonder whether the diagnostic boundaries are that bright and clear -- or that well understood yet. LBD seems to include varying degrees of autonomic dysfunction, if not as marked or steeply progressive as in MSA. If people can have brain pathology of both LBD and Alzheimer's, perhaps they can have pathologies of both MSA and a dementia.

Annie,
The boundaries between MSA and LBD are very clear. (And people do not have both LBD and MSA.) The boundaries between LBD and AD are less clear, perhaps because most LBD includes AD.
Robin

PS. You might want to start a new topic for this thread because we've kind of gotten off the "hospice" topic.

If people never have both LBD and MSA, does that mean anyone diagnosed with poss/prob MSA who shows signs of dementia will turn out on autopsy to have LBD AND NOT MSA? Conversely, does LBD include some or many of the autonomic dysfunctions (e.g. low body temperature, OH) associated with MSA? Do people with MSA ever have Alzheimer's too (independently)?

No wonder people are confused.

LBD can include some OR many of the autonomic dysfunctions.

Annie,

You asked: "If people never have both LBD and MSA, does that mean anyone diagnosed with poss/prob MSA who shows signs of dementia will turn out on autopsy to have LBD AND NOT MSA?"

Dementia is an exclusionary criteria for MSA. I don't know *anyone* with a clinical diagnosis of MSA who also had dementia with an MSA diagnosis upon autopsy. Thus far, the only confirmed diagnosis people in our local support group have been given when they had clinical MSA plus dementia is LBD.

One cannot "progress" from MSA to LBD. These are two totally separate disease paths.

You asked: "Conversely, does LBD include some or many of the autonomic dysfunctions (e.g. low body temperature, OH) associated with MSA?"

Yes, as Renata said. If you would look on lbda.org you will find that autonomic dysfunction can occur in LBD. If you do a search here of posts containing the keywords "Lewy" and "orthostatic," you will find lots of research in this area.

You asked: "Do people with MSA ever have Alzheimer's too (independently)?"

I do not know the answer to this question. I don't think there's any published data on it because so few MSA brains have been donated. (A couple of years ago Mayo Jax only had 40 MSA brains.) I can tell you that in our local support group, no one with a path-confirmed diagnosis of MSA had Alzheimer's.

Robin

PS. Again, I think it would be best if you started a new topic because this present discussion has nothing to do with hospice. Perhaps these questions are more appropriate for the ShyDrager list anyway?

My 88-year-old father, who has LBD, is in an Alzheimers care facility in Texas with his wife, who has Alzheimers. I'm monitoring him remotely from up north, while my stepsister checks in on them daily. Last spring, after he'd gone through four or five traumatic trips to the emergency room and was acting out in ways that were unheard of for this quiet, laid-back man (pounding on the windows, attacking people), my stepsister recommended that I call a hospice service that she'd heard about through her Alzheimers caregiver support group about enrolling my father in hospice. I'm a strong believer in hospice, having seen how good hospice care helped my mother through her terminal illness two years ago, Also, my father has a living will that makes it clear that hospice would be appropriate according to his wishes when the time came, but I thought that would be somewhat in the future as to my knowledge hospice was only for patients who had been definitely diagnosed as having six months or less to live, and whenever I asked anyone how my dad was they just said "Fine" (probably for reasons of patient confidentiality--and after all I'm not in a real sense the primary hands-on caregiver, my stepsister is.) But I went ahead and called the hospice, and to my surprise they had evaluated him and faxed me the enrollment papers within a few hours.

All reports are that my father is now back to himself and is in a good frame of mind, despite the unavoidable disorientation that his LBD causes him. My stepsister says that the other day he told her privately that my mother had visited him and they were kissing (which embarrassed him since his wife was right there.) I should mention that my mother, who passed away two years ago, was unrelentingly cruel to him and did whatever she could to keep me and my sister from having any kind of a relationship with him. The fact that he's capable of having a pleasant hallucination about her has to mean that he's in a good place right now.

Miffy,
I am glad your Dad was excepted for hospice care, I know people that have been getting hospice services for over 2 yrs, they just evaluate every 6 months,most people believe hospice is for people who are going to live no longer than 6 months but that is not always the case.

As to you Mom coming to hoim in a dream, he probably was remembering happier times in their lives I sure it couldn't all have been bad, I guess it was better than him remembering the sad times!

Miffy,
Thanks for sharing. I like the idea of including "get hospice for me ASAP" in a living will. I hadn't heard of that before.
Robin

Well, technically his living will doesn't mention hospice--he had it done before hospice was really a going concern around where we come from--but it does make it clear that when it comes to end-stage terminal illness he doesn't want to go the heroic medical route with the ventilator and feeding tube and so on. He also is a member of the Hemlock Society, so I think it's safe to assume that he would not object to hospice (which I think is nicer than hemlock.)

Miffy, thank you for that posting. I am somewhat encouraged by your father's acceptance into hospice. I had thought that my husband would not yet qualify. However, I just went away for 3 days/2 nights of respite, leaving him with a new home health aide from an agency I had used before. The aide was a good person but she was barely able to handle the care of someone of his size and disability. I came back to find her worn out and him weak and out of it. He had not been off the bed in 3 days, and he had also held back from having a bowel movement until I arrived, which made it something like 6 days. He'll revive, but it made me realize how difficult his care is. The aide (who's from Kenya) said to me, "You are a woman and a half!" I was pretty exhausted before I left and needed the break (which, however short, did me a world of good). But it made me realize how fragile his condition really is and how easily and quickly he can deteriorate. Maybe hospice is not such a far-fetched idea after all.