REQ2: advice MND/speechproblems
buuh at knoware.nl
Wed Feb 26 12:03:20 EST 1997
My name is Jan van Atten.
My address :
3007 AM Rotterdam,
I am in a hurry!
I advertised my story on Internet before
and received valuable answers. Since the
decline in my situation is rather drastic
I'm here again !!
I thank the people that have answered to
my first appeal.
1. 'Is it the beginning..., or is it the end?'
I have speech problems (bulbar disarticulation), and swallow
problems probably diagnosed as 'beginning' MND (motor
neuron disease), a failure to correctly trigger the throat,
tongue, and lip muscles.
(MND is a progressive kind of ALS (amyotrophic lateral
sclerosis), where similar problems affect the limbs).
My speech capabilities rapidly decrease and Dutch doctors
have yet failed to offer me latest available medication (I
only know rutilec or rulizole).
Neither have they prescribed me antibiotics against possible
consequences of Lyme disease (neuro-borreliose, tick bite:
Antibodies Borrelia Burgdorferi were found in blood tests).
My neurologists know a lot about affection of the nerves,
but they consume a lot of my precious time!
2. Repeated request
My previous requests to people that face(d) similar problems
were, if they knew others (Patients, neurologists, paramedi
cal specialists, technicians, Companies), that could give
hints or clues to:
- What I suffer from and what can be done to cure, stop or
delay the disorder (are newer medicines available than
rilizole or rutilec)?
- What is the advice hastening the procedures of elimination
(I am on waiting-lists for neurologists, checks and
- I should also like to receive addresses from (Non-Dutch)
patient or client groups that have an interest in the
3. Nice people and ...
Some nice people (thank you) have already given an answer to
my urgent request; the answers help me a lot because they may
give solutions to my complex problems. I think it amazing
that in this world people strongly feel pity for another
In addition to the expert's probable diagnosis, I received
the following answers and suggestions:
1. Somebody had neurological problems from MVA(?) in '84.
I think it was another disease, regarding the medicati
on (epilum, sinemet, tegretol, rivitril).
2. Another has speech problems due to a 'benign' form of
MS. There are a great vaiety of appearances from MS. He
friendly encourages to ask more questions.
3. An extensive and very friendly answer (from Texas?):
a. A hand held type of computer to produce speech from
text typed and use of fast-keys (Franklin Electronic
Publisher Inc.) (American speech may give problems
converted to Dutch). A probably similar device
available in our country will be demonstrated to me in
b. Words Plus software used; no extensive info avail-
able. Newsletter issued, but no address.
c. A cookbook for people who have difficulty with
chewing and swallowing from Baylor University in
Houston. I don't need it yet, but might sooner or
Some not-nice people (Dutch interest groups of patients that
suffer from A.L.S. and muscular diseases) refuse to lend me
their ears), whilst these could an optimum sources to strike.
Of course I am very grateful to the nicer people that think
with and for me (Same as I despise people that claim to stand
up for the interests of sufferers and escape from their
If people missed my first appeal, but recognize the symptoms,
I would be grateful if they would contact me in any format.
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