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01-08-2018, 09:37   #1
Boards.ie: Niamh
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Now Ye're Talking - to someone with Motor Neuron Disease

Our next guest is a 35 year old man who has Motor Neuron Disease. This is a disease which usually presents a bit later in life so he is one of a small number of people under 40 to be affected. He can answer any questions you have about the real life impact for him of Motor Neuron Disease.

Thanks!

Edit:
Adding a bit from the Irish Motor Neuron Disease Association to explain what MND is:

Quote:
What Is MND?
Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching the muscles, which leads to weakness and wasting.

MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.

The cause of MND is not known. There may be environmental factors that trigger the damage in people who are susceptible to the disease. On going research is necessary to find out the nature of these environmental factors, and what makes one person more susceptible than another.

MND strikes people of all ages and currently there is no cure, however symptoms can be managed to help the person achieve the best possible quality of life. The drug Riluzole (Rilutek) has shown to be helpful in slowing down the progress of the disease.

Last edited by Boards.ie: Niamh; 01-08-2018 at 11:01.
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01-08-2018, 10:22   #2
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Hi,

Thanks so much for taking time to answer questions. I don’t really have any questions really, but I just wanted to comment really.

A friend of mines mam is a nurse specialist in MND, and I have collaborated scientifically with people who work on MND, so I am aware of the nuts and bolts and ongoing research. I am absolutely blown away by the resilience of patients in the face of true adversity.

I wish you all the very best.
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01-08-2018, 10:33   #3
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Hi,

Thanks so much for taking time to answer questions. I don’t really have any questions really, but I just wanted to comment really.

A friend of mines mam is a nurse specialist in MND, and I have collaborated scientifically with people who work on MND, so I am aware of the nuts and bolts and ongoing research. I am absolutely blown away by the resilience of patients in the face of true adversity.

I wish you all the very best.
Hello

Thank you. There are 3 MND nurses to cover the whole country, my nurse is from Sligo. They do amazing work and are a huge support to MND patients on their journey.
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01-08-2018, 10:43   #4
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Thank you for taking the time to come here and answer our questions.

When did you first start noticing symptoms and what were they? How long did it take you to get a diagnosis.

Thanks again.
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01-08-2018, 11:00   #5
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Thank you for taking the time to come here and answer our questions.

When did you first start noticing symptoms and what were they? How long did it take you to get a diagnosis.

Thanks again.
Hello, a very good question.

To be honest I came across it by accident really. When I was 30/31 I was getting muscle cramps in my calf muscles and twitching in one arm.

A GP spotted my arm during a routine visit and booked me an appointment in Beaumount to see a specialist who asked me to come in for tests.

I spent a week undergoing tests before diagnosis.
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01-08-2018, 11:13   #6
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What kind of progression have you noticed over the years since your diagnoses

Do you have a better outcome getting it early and starting treatment
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01-08-2018, 11:14   #7
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Hello, a very good question.

To be honest I came across it by accident really. When I was 30/31 I was getting muscle cramps in my calf muscles and twitching in one arm.

A GP spotted my arm during a routine visit and booked me an appointment in Beaumount to see a specialist who asked me to come in for tests.

I spent a week undergoing tests before diagnosis.

Hi there, firstly cheers for being here to answer what may be some tough questions.

Can you explain what you mean by the twitching in the arm and cramps, would there be a particular pattern or way these thing happen?

When first being investigated where other symptoms or outcomes considered before the actualy MND diagnosis?
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01-08-2018, 11:19   #8
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Just to say thank you for volunteering to answer people's questions. It is kind and brave of you. My dad died young enough with MND and it terrifies me, to be honest. A stumble or an unusual twitch can make me feel emotional and worried. It would be wonderful if medicine can find a solution for you to ameliorate or cure your condition and in the meantime I wish you very slow progress in the condition, an abundance of joy and adventure in daily life and all the very best of luck.
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01-08-2018, 11:20   #9
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Originally Posted by I've Motor Neuron Disease, AMA View Post
Hello, a very good question.

To be honest I came across it by accident really. When I was 30/31 I was getting muscle cramps in my calf muscles and twitching in one arm.

A GP spotted my arm during a routine visit and booked me an appointment in Beaumount to see a specialist who asked me to come in for tests.

I spent a week undergoing tests before diagnosis.
Thanks for your response.

Did you have muscle weakness at that time that you hadn't noticed. In hindsight were there obvious signs (ie: weakness) that you missed at the time?
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01-08-2018, 11:33   #10
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What kind of progression have you noticed over the years since your diagnoses

Do you have a better outcome getting it early and starting treatment
Hi it has been 3.5yrs since my diagnosis.

In that time I've gone from being fully fit to needing two hands to pick up a cup. I need my wife to dress me and a walking stick to walk.

There is no cure, only 1 drug called Rilutek which slows it down by up to 3 months.
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01-08-2018, 11:45   #11
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Thanks for your response and hopefully a cure will come about
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01-08-2018, 12:07   #12
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Hi there, firstly cheers for being here to answer what may be some tough questions.

Can you explain what you mean by the twitching in the arm and cramps, would there be a particular pattern or way these thing happen?

When first being investigated where other symptoms or outcomes considered before the actualy MND diagnosis?
Hi, I would be at work and at random times a calf would cramp up like a footballer gets. The arm twitching or fasciculations as they are known happen because the messages from the brain do not reach the muscles so they become irritated.

https://www.youtube.com/watch?v=9Q0SfKfIcYc

There is no definite test for MND. It is diagnosed by ruling out everything else.
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01-08-2018, 12:15   #13
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Just to say thank you for volunteering to answer people's questions. It is kind and brave of you. My dad died young enough with MND and it terrifies me, to be honest. A stumble or an unusual twitch can make me feel emotional and worried. It would be wonderful if medicine can find a solution for you to ameliorate or cure your condition and in the meantime I wish you very slow progress in the condition, an abundance of joy and adventure in daily life and all the very best of luck.
Hi. I'm sorry to hear about your dad. Would you mind sharing his journey?

I fully understand your fears as I have young children myself but you can't let a what if stop you from enjoying your life.

We'll all get there someday anyway.
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01-08-2018, 12:20   #14
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Thanks for your response.

Did you have muscle weakness at that time that you hadn't noticed. In hindsight were there obvious signs (ie: weakness) that you missed at the time?
During the tests we noticed the muscle between my right thumb and 1st finger to be slightly wasted but I had no loss of strength.
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01-08-2018, 12:22   #15
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Thanks for your response and hopefully a cure will come about
Thanks if they could press pause its would be a great start.
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