A Perspective

[Guest guest]

Hi

I have been reading mail here for quite some time but haven't posted

before, mainly due to lack of time.

My name is Cummings and I live in Melbourne, Australia. I am 60

and an early retiree from the IT world in order to care for my soon to

be 63 year old wife who has MSA. I do not profess to be an expert but

I have searched the Internet fairly exhaustively over the past three

to four years.

My wife was diagnosed in 1994 with PD having had the symptoms for a

couple of years before that. Her Neurologist was suspicious from the

start because her reflexes were too good for someone with PD and

eventually, after referrals and MRI scans, the diagnosis was changed

to MSA. My wife has seen four Neurologists and none of them will

place their hands on their heart and say it is definitely MSA and they

all say that I won't know for sure until autopsy.

My wife has willed her brain to the local brain bank.

I believe she has MSA and I also believe that she has SND. She is

quite advanced - can not walk, is wheelchair bound, has a PEG, will

soon have a supra pubic catheter, has great difficulty swallowing, has

all her medication and a third of her food administered via the PEG,

the remainder of her food is taken orally and is vitamised to a honey

consistency. All drinks are thickened to a honey consistency. She

has regular choking episodes as a result of mucus slipping down into

her windpipe. Her speech is rapidly deteriorating and she now uses a

lightwriter. She can not write at all. She communicates with her

friends via email using one finger on her left hand (she is right

handed, or was!). Mentally she is as alert and sharp as she ever was.

For those interested, her daily intake of medication is:

1000mg Sinemet-M or Kinson-M (levodopa+carbidopa) 100mg/25mg -10

tablets

1mg Cabaser (cabergoline) – 1 x 1mg tablet

5mg Parlodel (bromocriptine) - 2 x 2½ mg tablets

1.25mg Paxam or Rivotril (clonazepam) - 3 tablets

200mg Zoloft (sertraline) - 2 x 100mg tablets

40mg Prepulsid Forte (Cisapride - as monohydrate) - 2 x 20mg tablets

24mg Bisolvon (bromhexine hydrochloride) – 3 x 8mg tablets

500iu Vitamin 'E' – 1 capsule

Epsom Salts – I flat teaspoon

En-zy-mex – 2 tablets

One of the Neurologists believes that our three sons have a 50/50

chance of contracting the illness and I have no reason to doubt him.

My wife's father was diagnosed with PD in his late 60's but died as a

result of a heart attack (not connected with the PD - he also had

emphysema) about two years after his PD diagnosis. As my wife's

condition deteriorates, we can both see strong similarities with her

father. It is a pity we didn't ask for an autopsy then - I suspect he

had MSA or something similar. Going back in my wife's family history,

there are a number of recorded accounts of ancestors having tremors.

But they lived in the country and did not have access to the city

doctors, and of course, they generally didn't live as long in those

days.

Regarding the prognosis for MSA. I don't see any harm in the

statement that it is in the region of 7-12 years. Many Neurologists

do believe that but like all illnesses there will be exceptions to the

rule. Some will die sooner, and some will live longer. Take for

example the renowned British scientist Hawking who has MND.

He is way past his " use by date " and is still going strong. At the

rate my wife is deteriorating, she will need nothing short of a

miracle to live past the 12 year mark. I also feel that anyone who

lives way past 12 years probably doesn't have MSA but has something

similar.

Finally, for those of you who are ill and for those who are Carers, I

will share with you a letter that my wife wrote about 18 months ago in

which she wrote about her coming to terms with what she jokingly calls

her " Palsy " . For me, it is one of the most beautiful things I have

ever read. I only wish that I had her faith and courage and that I

was as accepting of her condition as she is. I share it with you in

the hope that it might help someone out there who is grappling to come

to terms with what is the most challenging thing ever in their lives.

I have my wife's () permission to share this letter.

Regards

Cummings

My Shaking Palsy –An attempt at understanding

by Cummings

Brilliant Thoughts

We all must die. That is how things are. The next generations have to

have their turn, and we have to prepare for them and then make way for

them. The Creator Spirit, who sustains all life, and indeed everything

that exists, has decreed it thus. As the psalmist says:

You sweep them away, they are like a dream,

Like grass that is renewed in the morning;

In the morning it flourishes and is renewed;

In the evening it fades and withers.

Ps 90

Although I am not thrilled to be one of those who " fades and withers "

of the Palsy at my age, I have in my possession the death certificates

of most of my grandmothers, and I feel I have no right to cry " why

me? " . I am no more special than my maternal great–great-great

grandmother Malloy who died at 55 or her daughter Jane

who died at 56. Neither am I more special than my paterenal Irish

great-grandmother Johanna Maher who died at 42, or my father's mother

who died at 62. Admittedly my Shepheard great- grandmother lived to 90

and my Spinks great-grandmother until 96 and my own maternal

grandmother to 83.

And even though I am fading and withering prematurely, I have had a

very good life. I was born to parents who loved me and gave me the

best start in life that they could including a first-rate education

and my Catholic faith. I have enjoyed the love of a good man and am

the mother of three fine sons. I have also been blessed with two

grand-daughters and have acquired potentially two more grand-daughters

and a grandson through my sons' relationships. I have never been to

Rio nor have I seen the Eiffel Tower, but I have seen and heard

President Sukarno, and I have seen the Angkor Wat temple complex in

Cambodia, the Borobodur temple in Indonesia and Chichen Itza in

Yukutan, Mexico. I have also kissed the Blarney Stone. .

I accepted, with a reasonable degree of equanimity and some sadness,

my father's diagnosis of the palsy. Things like that just happened to

old people. I do not mean I am being punished but that I do not have

the right to expect special treatment. The doctor treating my father

said, when he died, " You should be happy that Paddy was spared the

Parkinson's which is a disgusting and degrading condition " . " Thank

you, God " , I dutifully said. But what do I say now?

On Tuesday, along with my husband, I saw my neurologist who looked at

me with kindly professional interest. He replied to a question I

cannot remember asking that he could only guess how long before I had

completely lost mobility, and my husband would have to consider a

heavier type of total care for me but thought six months a reasonable

figure. He also thought I might have had a couple of slight strokes

because he could detect an incease in my facial asymmetry. Last

Sunday, at the suggestion of my good friend Judy, Father Flynn

gave me a special healing blessing and annointing.

So what do I make of all of this? There is a very moving prayer by the

late Jesuit writer, Pierre Teilhard de Chardin, called the " When "

prayer. It puts the physical and mental disintegration of ageing and

death in a positive light, and seems to be the completion of the

lovely Psalm 139.

" You hem me in, behind and before

and lay your hand upon me " …

" For it was you who formed my inward parts;

You knit me together in my mother's womb…for I am fearfully

And wonderfully made "

Teilhard believed that all creation is evolving by working towards the

" Omega Point " which is Christ. We are naturally essential to this

process because we are the highest form of life that has evolved . We

are to be creative and to resist evil whether moral or physical evil

on a large scale or in our daily lives. We are indeed to " divinize "

our lives offering to God, both our " activities " and our

" passivities " . The passivities are more or less our given qualities,

good and bad, our circumstances in life, our physical and mental

health, intelligence, the things that happen to us. By being offered

to God, with the wine at Mass (which Teilhard says represents our

" passivities " , with the bread representing our " activities " ) and

therefore linked to Christ's sufferings, they are given value. They

can be offered for others – our loved ones and all who need our

prayers. It is possible to see an answer to a situation like having

the Palsy.

Teilhard addresses God in his " When " Prayer saying that when the signs

of disintegration and diminishment appear in his body or mind he

should remember that it is God who is:

" parting the fibres of my being

in order to penetrate

to the very marrow of my substance

and bear me away within yourself " .

So the Creator Spirit who knit me together in my mother's womb is

unravelling his handwork and in Resurrection will re-make me.

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