Message for Senewald

[Guest guest]

aka the wombat:

The parallel between Terry and Pat are virtually perfect except for the

meds. Terry has a lot of meds, but none are for her MSA/SND. We tried

Permax to see if it would help the freezing without success.

Your last two paragraphs, marked below with ####, are especially

relevant. When Terry crys, she is unable to tell me why.

As you say, this is a bloody awful illness.

Thanks for your comments.

Message: 5

Date: Wed, 19 Jun 2002 12:18:17 -0000

Subject: Message for Senewald

I have been reading your comments on Neuropsychology testing and

Caregiver feelings. It gives me a sense of deja vu. I would like to

share with you what has happened to in this area. It is

complex, so please be patient with me.

Firstly, I am convinced that has SND which is more closely

(in my opinion) associated with Parkinson's Disease. And I feel that

she has the typical Parkinsonian cognitive impairment which means

that she can only do one thing at a time. I have watched her

closely over the years and I have come to this conclusion.

If someone asks me a question, before I answer it, many many 'what

ifs' will flash through my mind. For example, can I attend a

particular meeting. In the space of a nanosecond, thoughts will

flash before my mind, such as - do I want to go, what will I get out

of it, what can I contribute to it, is there a cost involved, who

will be able to look after if I go, is there parking

available, do I need to eat early, and so on. And an instant

decision is invariably made. can not do that any more. If

I ask her a question, it appears that only one signal arrives from

the brain. All the other (possible 'what if' type) signals are

probably generated but disappear somewhere. And when another signal

does arrive, the previous signal is lost, and forgotten about. And

this is a lady who has a very high IQ. I remember some time ago,

when I was feeding her, and someone else in the room spoke. She

listened to that person and instantly forgot that I was feeding her.

When I coughed, and showed her the spoon, she giggled in

embarrassment because she had forgotten I was feeding her.

Another example - we agreed one day that it was no longer possible

for to go shopping, in fact we agreed that any outing was

now a difficulty. I suggested I might sell our special wheelchair

vehicle and buy a standard motor car. She understood and agreed.

Some weeks later, we were talking about the forthcoming birthday of

one of our granddaughters, and she asked me to take her shopping to

buy a birthday card and present. When I reminded her that we had

agreed that shopping was no longer possible, she burst into tears and

cried for over half an hour, sobbing uncontrollably. I came close to

calling an ambulance because her breathing became very laboured. She

hadn't forgotten what we had agreed, it is just that her brain didn't

produce the signal to remind her.

You said:

I find that Terry is quite self absorbed as she tends toward a single

tasking mode as described in a separate post on the list to Zac about

psych

testing. As a result, she usually wants what she wants " right now "

without

any consideration to what else may be going on or what I may be

doing. Her

world is the one right in front of her. Other major issues in our

lives

are largely off her radar screen.

Oh yes, how I can relate to that. But with , I think there

is an explanation and maybe, just maybe, it might be the same with

Terry. When was first diagnosed, and her Neurologist

determined what medication she should be on, he wrote to her

explaining the possible side effects of her medications, in

particular Sinemet (levadopa carbidopa) and Parlodel

(bromocriptine). She wrote back saying she would defer taking the

medications until her next appointment with him. She explained to

him that all her life, she had suffered from an anxiety problem that

had been kept under control with the appropriate medication. She

also explained to him that, while living overseas in the late

seventies, she developed OCD (Obsessive Compulsive Disorder) which

was again managed with the right medication. He confirmed the

medications and monitored them closely. But he warned us that it was

highly likely that both the anxiety disorder and the OCD would be

aggravated in time as a result of the medications.

understood and agreed to take the medications. She did in fact

suffer badly at first with hallucinations and 'waking dreams'. But

with the right supervision and adjustments to the medications, she

settled down quite quickly. But over time, the anxiety and OCD have

gradually worsened to the point now where I am convinced that

has two illnesses - MSA and an anxiety disorder. And at

times, I wonder which is the bigger problem of the two.

#### I married a lovely lady, wouldn't say boo to a goose. Rarely argued,

quite docile. Like Terry, she was never selfish, quite the

opposite. But now, if she wants something, she is like a dog with a

bone. She won't take no for an answer. On more than one occasion,

volunteers have said to me that if was aware of the demands

she was making, on me in particular, she would be mortified. She

just is not aware of what she is doing. And I have to somehow manage

this without upsetting her.

##### She is now subject to frequent bouts of tears, often for the simplest

of reasons, and the fact that communication is so difficult for her

only makes it all the worse. God, this is a bloody awful illness.

I hope this is of some use to you. I am happy to share further with

you if it helps.

____________________

Regards

aka the wombat

http://members.optushome.com.au/wwwombat

Sennewald Charlottesville, Virginia