Re: Time to Respond (Frances)

[Guest guest]

Frances:

After reading your letter I had to take the time to respond.

I too lost my husband to CJD, three years ago this Jan. As you did I

witnessed him going through some

very difficult changes, but for me the worst was that our son also witnessed

his strong Dad acting so erratic.

That for me was so very heartbreaking, he was only 13 when he started seeing

the changes in his Dad and 18 when

he died. Now he lives with those visions and the visions that this may

happen to him. You see the familial from

of CJD is in our family. And because of our situation it is simply

impossible to stop fighting for acknowledgement

of this dreadful disease and more importantly a cure. I sometimes want to

simply put it out of my mind, but I

know in my heart that that is simply not an option, for my son's sake.

Francis, you have the right to feel beaten you have gone through so very

much. But try to remember that you and

your son are still here and for that reason you have to go on and live the

best life you can. Grab onto anything that

will give you happiness and motivation. Life is worth living.

As for the survey, if you can't do it for yourself and your son than answer

it for all of us who are fighting to rid this

world of CJD. I would jump at any opportunity to bring more awareness.

Francis - I only wish you and your son well. My God Bless & Help you both.

Jackie Laplante

ext.309

Time to Respond

I have been a member of CJDVoice for a month or so now. After

receiving approximately 200 messages from CJDVoice and various

members, I have learned much regarding CJD. I was not aware of

the different types of CJD, but I am now. The good that CJDVoice

does is to be commended.

Up to this time I have not wanted to relate my message, but here goes.

My husband, myself and family lived in a suburb of Toronto for many

years. My husband became ill with this horrible disease in March,

l995. Inch by inch he died, finally on July l6, l995. The horror of it is

still in my mind, even after three years.

Before he became ill I had lost my parents, my six brothers, and three

sisters. They all said they would never leave me alone because I was

the baby.

There was a wrong diagnosis in my husband's illness. As a result

he was not hospitalized. I had no idea what was wrong with him. I

was totally alone while he lost his speech, sight, was unable to move

or walk, had horrible hallucinations, seizures, etc. He tried to strangle

me one night in bed, because he thought I was one of " those Hairy

Creatures " . I rolled out of bed just in time. Sometimes now I wish

I had not been able to get away from his grasp.

The last words he said to me were " I'm sorry " . It broke my heart, but

that was Fred. A wonderful, kind human being who always thought

of others first and was ready to apologize for any inconvenience he had

caused. The autopsy they finally performed on him confirmed

Spongiform encephalopathy-Creutzfeld Jakob Disease. After three

years researchers are now doing more tests on his brain slides.

Now that I am able to think more clearly, I have been looking for more

information that would assist myself and other families who have lost

loved ones to this disease. CJDVoice has been of great help. But

frankly I am somewhat sadder now and a little more hopeless.

I do know more now about CJD, more about deadly drug resistant

superbugs, as a result of animals taking more antibiotics so that they

will grow more quickly. I know more about beef bans that only make

sense to the beef industry. I know about deadly nutritional supplements

b eing totally unregulated, full of bovine products. I know that more

pounds equals more money for cattle breeders. I know that you do't put

the cows out to pasture to eat grass. Feed them other ground up

sick animals instead. It makes more money.

Now there are horses dieing from microtoxins in the grain. It is in our

bread, in everything that is made of grain and everything that is fed

with grain. The symptoms in these sick horses are the same as CJD.

Veterinarians don't help. They don't have the answers. Once again

this information is being suppressed by the gov ernment for monitary

reasons. We can't eat beef, chicken or bread with confidence anymore.

My son, in his wisdom asked me if we might eventually have " Soylent

Green " for our supper. Possibly so!

I have been asked to participate in government research regarding

CJD. I want to help. I do want answers. I want my voice to be heard.

But I am not confident anymore. You lose some of the old swagger when

you have been knocked to your knees so many times.

Is it wrong to be so negative? I just wonder if it is impossible to beat

the system. Greed and deceit seem to be the winners, Perhaps the

old saying " Nice guys don't win ball games " is true, after all.

As to the Voices of CJD, what can we accomplish? I guess what I

want to know is, does anyone in high places listen to our voices?Do

any powerful organizations pay any attention to what is said?

I am confident that my husband ate contaminated beef, but no-one

wants to hear it. Does anyone want to learn the truth, or will I just be

crying to the wind?

Thanks for reading this. It has been therapy putting it into writing.

Frances R. - email address - frsmith@...

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