MY MOTHER & CJD

[Guest guest]

Welcome Back Kerry....we spoke to each other MANY months ago...I am just new

back here too....

Will write my husbands' story soon...

thanks for coming back

Beverly B

[Guest guest]

To all

For most of this year I've been on the critical information list and so

I'm a little " out of touch " . In the time I've been working interstate,

a whole new group of people are active in discussion and the majority of

the people I " knew " are reatively quiet. Some wonderful and amazing

changes have occurred on the structure of the web pages, my

congratulations to all involved.

Because of these changes, on many occasions it's a little awkward to

jump into the discussion because I don't have all the information and in

many cases I can't really understand what you're talking about... the

thread is obviously well established and familiar to all of you in daily

contact. I know it won't take too much longer for me to catch the drift

of new topics and then I'll look forward to joining in occasionally.

As a way of re-introducing myself to the group, I wanted to share our

story. I couldn't think of a way of making it shorter, so apologies

that it's a rather lengthy message that follows....

_____________________________________________________________________

In February Mum had a sore back, tingling legs and felt a general

weakness in her limbs. She was sent to a physiotherapist. While

spending time interstate with my sister, she had an isolated incident of

walking down the street and feeling as if she was going to lean so far

to the left that she'd fall over. Fortunately she was beside a fence

and she grabbed onto it. Mum was feeling very tired.

In March/April she was suffering from a terrible dry, hacking cough

which would be followed by a series of sneezes. This affected her day

and night and it was very tiring. Mum felt as if she needed a new

script for her reading glasses but extensive tests showed her

prescription hadn't altered. When Mum's legs started feeling, as she

described " wobbly " , the GP sent her to an Ear Nose & Throat specialist

on the suspicion of an inner ear problem which was may be affecting her

balance. He ordered a CAT scan which showed a slight abnormality in the

amount of fluid surrounding the brain but one which can be attributed to

age-associated atrophy within normal ranges. There was nothing wrong

with her inner ear.

The end of April saw a first visit with a wonderful and caring

neurologist. By this stage Mum's gait was affected and she was using a

walking stick. The cough was still prevalent and Mum's short term

memory wasn't as good as it used to be. The neurolgist tentatively

diagnosed a disease named Guillain Barre Syndrome. It is not dissimilar

to MS but the difference is that it's not a continually degenerative

disease. Surrounding the nerves is a " conductor " called the myelin

sheath. GBS causes the myelin to degenerate and therefore the brain is

unable to effectively send messages. Stringent physiotherapy on Mum's

legs was arranged for home in an attempt to keep muscle tone during the

course of the illness. Hers was a mild case, sever cases see patients

on ventilators because the message to breath isn't able to be

transmitted. Nerve conduction studies and blood tests confirmed the GBS

diagnosis but apart from physio no treatment is available for this

illness.

By the end of May the progression in balance problems and memory loss

were continuing. An appointment to see the neurologist was made and on

the 4th of June he ordered Mum straight into hospital - that day. During

this entire period, Mum had been working from home as a public relations

consultant for a not-for-profit home nursing group. She was researching

and writing their inaugral newsletter and participating in the redesign

of their corporate image. Mum was a journalist, professional fundraiser

(predominantly for medical causes) and also a public relations/ media

liaison.

Initially, Mum was in a medical ward and in mid June she was transferred

into a rehabilitation ward. At this point, Mum's care was transferred

to the doctor in charge of the ward, a gereontologist, and the

neurologist acted on a consultancy basis. In rehab, each day was a

routine of hydrotherapy, physiotherapy and occupational therapy.

Mostly, the intention was to help Mum maintain the ability to walk.

By the end of June Mum was being treated by a psychiatrist because they

believed she was suffering from a severe depression. Her personality

had changed in that she spoke in a sing-songy voice and was very happy.

But her social skills had dimished and she would say whatever came to

mind, usually in a child-like manner not intended to be mean. She had

forgotten that Dad had died from cancer, but didn't seem upset when we

had to tell her he was no longer with us. Mum didn't like walking and

was trying hard to be co-operative with the nurses and therapists but

she was asking them to be patient and not expect things of her that she

couldn't deliver.

July saw a continual decline in motor functions. Mum didn't want to

walk unless she knew I was with her and this was such a terrible thing

to see. We were telling the gereontologist that we were convinced that

there was something more and he was telling us we were lay people and

what would we know. I was in contact with a GBS support group and by

this stage Mum's symptoms were atypical of the illness she'd been

diagnosed with. We researched numerous possibilities which could

account for the decline and were fobbed off. I asked that the

neurologist again be consulted and explained to him that we felt there

was an " organic " decline. We even mentioned CJD to him as we thought

she was somwhat symptomatic, but we were lay people and what would we

know? We asked for Mum to have blood tests for everything from heavy

metals, minerals to syphillis. He told us that he couldn't discuss

syphillis with us! When we asked him why, he said it was because she

was our mother???? We then explained that we wanted answers and that

becuase she was exhibiting some symptoms of having syphillis, wasn't it

worth doing a blood test and testing her so we'd know? We knew, of

course, that Mum wasn't in a high risk category by any means but we

wanted all possibilities excluded and if that was one then it needed to

be considered. That was when he admitted they'd already tested her for

it. Why on earth he didn't say that in the first place, who would know.

By the end of July Mum was experiencing bladder incontinence...

thankfully she seemed totally unaware of this. Her ability to eat by

herself had gone and I was at the hospital for each of the three meals.

Sometimes it would take an hour to feed her dinner. The nurses didn't

seem concerned even though I was expressing my frustration at the

decline going apparently unnoticed. With incontinence came the need to

move Mum out of rehab and back into the medical ward.

In the first week of August we found ourselves in a huge private room

and what a difference that made to our lives. We moved down the hallway

at lunch time on a Monday and I told the nurse that Mum was having

trouble swallowing etc. She sat with us for the first two mouthfuls and

then gently said that I should stop and she'd make another arrangement.

Within 10 minutes a " vitamised " meal arrived. What a relief that

someone was finally listening. We were back under the care of the

lovely doctor and surrounded by the most wonderful nurses, many of whom

knew Mum from her stay on the ward in June. They were appalled by her

decline in those 5 weeks and treated Mum like a princess.

A speech pathologist was called in the following day and Mum's diet was

altered to thickened fluids. A few days later she couldn't manage those

and was put on a drip and then a nasal gastric feeding tube. On a

weekend in the middle of August, the neurologist told us that he thought

Mum had CJD and that she may have 1-3 weeks to live. He asked a

colleague, a clinical diagnostician, to provide a second opinion. He

confirmed the CJD diagnosis and thought Mum may be with us for up to

four weeks. A week later Mum spoke her last words and gave her last

" real " smile... twelve weeks later, on October 24 1997, Mum passed

away. She was just 63 years old and her illness lasted for 8 months.

Post mortem and DNA testing revealed that Mum did initially have

Guillain Barre Syndrome AND that her death was from sporadic CJD.

From when I found CJD Voice on that terrible weekend in August until

when I transferred to the critical info list earlier this year the

information and support we received has been tremendous. I'm now

looking forward to being back in contact with those of you I do know,

and also getting to know some of the newer members.

Thanks for listening and best wishes to you all,

Kerry (Brisbane, Australia) kerry@...