REQ2: advice MND/speechproblems

Huub Beijers buuh at knoware.nl
Wed Feb 26 12:03:20 EST 1997


My name is Jan van Atten.
     My address :
     PO-box 9545, 
     3007 AM  Rotterdam, 
     The Netherlands
     
     SECOND APPEAL
     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
     analyses).
   - I should also like to receive addresses from (Non-Dutch)
     patient or client groups that have an interest in the
     described symptoms.
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
   person.
     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
         two weeks.
         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
         later.

   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
   responsibilities).


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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