Re: Message for Senewald> and and others

June 21, 2002

I am sure you might have already read what I wrote to Marg that I am

going to be taking the neuropsychology test. I have to call and see

when because I don't know if they said if they are making the

appointment or if I was suppose to. I remember her saying something

about counties close to my home but that is all I remember about it.

I also wanted to say, I thank you for telling us about the

experiences that you are having with your wives. We have a lot of

women on here talking about their husband's experiences but not as

many men talking about their wives experiences. Being a woman with

this disease this is truly helping me and I appreciate it so much! I

think with men and women being different that the experiences that

women have with this emotionally might be some different then men. I

can relate to some of the things I have been experiencing with what

and have wrote. Yesterday at the doctor's office I just

broke down crying because I couldn't remember 3 words that they told

me to remember later in the questioning. I know that was a wierd

reaction but I couldn't help it. It bothered me immensly. It also

bothers my husband immensly if I start crying for any reason. I try

not to cry but I can't always control it even when it is something I

know is udderly ridiculous. Well, I just wanted to thank you for your

help.

God bless,

Belinda

>

> 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

June 22, 2002

Belinda:

I believe you are right on the money about the role reversals between men

and women with this danged disease.

With respect to spontaneous crying, tell your husband I know how it feels

to apparently know something is wrong and not be able to help the wife who

is crying. I do find it does not last very long. Like a summer rain squall.

On the testing, be sure to get a neuro psychologist or at least one who

knows the neuro context. I doubt if any old psychologist would be able to

translate the test result into nuero degenerative specifics. You may

recall, in our case the psychologist is Co Director of the department we

are seeing.

Good luck in your efforts.

Message: 15

Date: Sat, 22 Jun 2002 01:27:20 -0000

Subject: Re: Message for Senewald> and and others<