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Thread: Introduction

  1. #1
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    Introduction

    Hello all, I am Shahab Uddin, 52, of Bangladesh. Doing Forestry Service under the Ministry of Environment and Forests, Bangladesh.I am having the problems of slurred speech, low strength and movements in tongue, teeth bites in the tongue and mouth walls and problems in chewing and swallowing. At present I am taking Tab. Relutek 50 mg thrice daily. I feel very distress condition. I have one kid and one juvenile sons. I am very worried thinking about the future. Please help me what to do? Thank you very much.

  2. #2
    Forum Member Streetwise's Avatar
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    [SIZE=7]welcome you can get baby teething granules for the wounds in your mouth, eat as much as you can , you are probably frightened to say that I was frightened when my mother was diagnosed would not describe it .
    what help can you get in Bangladesh ?I looked on the Internet but couldn't find any information, it seemed they were private hospitals but that was it . my mother looked for a cure never found one , you are taking the only medicine for muscle wasting diseases,there is a medicine called Carbosistine or Mucodyne for the mucus you may have in your mouth , do you have an app on your computer so that you can synthesise speech ?,there is a machine called a light writer that is small and you can carry but you can type on and it will speak for you, I don't know if your health service would give it to you ,in the UK we were given one but not immediately we had to wait.
    try to start making your house as easy to walk around as possible if you can get handrails put in the bathroom and corridors and a handrail beside your bed .
    if you don't have a crutch or a walking stick get one ,it will give you a rest from the fatigue start to puree your food what ever way you can do it ,it will help with swallowing.
    if you could get it ,ask your doctor for a powder to thicken your food, if you don't already have it ! my mother started to watch television when she was diagnosed 21 years ago there was little provision for keeping your mind active apart from radio and television she listened to talking books that is someone has read a book and it was recorded so you can listen to them reading the book if you have a public library you may be able to get them for free ,I couldn't find a motor neurone disease Charity in Bangladesh.
    I cared for my mother but I knew nothing about motor neurone disease The doctor is that a local hospital couldn't even diagnose it ,my mother had to go to the library and do it herself hope this helps

  3. #3
    Forum Member Terry's Avatar
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    Hi Shahab and welcome to the forum;

    Sorry to here your serious problems and I wonder what tests you have had to rule out other possibilities.

    Relutek is the medicine to slow Mnd but it should be taken 2 times a day roughly 12 hours apart, preferably 2 hours after eating and an hour before. It is important that you have blood tests done to confirm that your liver and kidneys are OK after taking it.

    Like Streetwise says, try to eat well and keep your weight up and also treat any mouth sores. Some people find a soft mouth guide useful too.

    Please feel free to ask any questions or share things with us.

    Best wishes, Terry
    Last edited by Terry; 13th February 2018 at 12:38.
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    Forum Member Dude's Avatar
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    Terry I found your criticism of Streetwise uncalled for and would have been better addressed by PM. Dude x

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    Forum Member Streetwise's Avatar
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    I don't agree it's a public forum I get the message I won't be communicating with you

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    Forum Member Streetwise's Avatar
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    thanks

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    Forum Member Terry's Avatar
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    Quote Originally Posted by Dude View Post
    Terry I found your criticism of Streetwise uncalled for and would have been better addressed by PM. Dude x
    You are right Dude, I should have sent a PM, I was going to change it to one but I didn't have the time.

    Regards Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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