Now Ye're Talking - to someone with Motor Neuron Disease

Boards.ie: Niamh · 01-08-2018 9:37am #1

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:

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.

sullivlo · 01-08-2018 10:22am

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.

I've Motor Neuron Disease, AMA · 01-08-2018 10:33am

sullivlo wrote: »

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.

whatawaster · 01-08-2018 10:43am

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.

I've Motor Neuron Disease, AMA · 01-08-2018 11:00am

whatawaster wrote: »

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.

mittimitti · 01-08-2018 11:13am

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

1hnr79jr65 · 01-08-2018 11:14am

I've Motor Neuron Disease, AMA wrote: »

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?

Malayalam · 01-08-2018 11:19am

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.

whatawaster · 01-08-2018 11:20am

I've Motor Neuron Disease, AMA wrote: »

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?

I've Motor Neuron Disease, AMA · 01-08-2018 11:33am

mittimitti wrote: »

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.

mittimitti · 01-08-2018 11:45am

Thanks for your response and hopefully a cure will come about

I've Motor Neuron Disease, AMA · 01-08-2018 12:07pm

Sour Lemonz wrote: »

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.

I've Motor Neuron Disease, AMA · 01-08-2018 12:15pm

Malayalam wrote: »

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.

I've Motor Neuron Disease, AMA · 01-08-2018 12:20pm

whatawaster wrote: »

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.

I've Motor Neuron Disease, AMA · 01-08-2018 12:22pm

mittimitti wrote: »

Thanks for your response and hopefully a cure will come about

Thanks if they could press pause its would be a great start.

Malayalam · 01-08-2018 12:22pm

I've Motor Neuron Disease, AMA wrote: »

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.

Just here I would rather listen to what you have to say. He was in his 50s so there is some difference, and it was some time ago so hopefully medical knowledge has advanced. But he had developed that same super-human ability to make a compassionate compromise with the cards that life had thrown at him as you apparently have, and was, like you, prone to being wise. All the very best.

I've Motor Neuron Disease, AMA · 01-08-2018 12:31pm

Malayalam wrote: »

Just here I would rather listen to what you have to say. He was in his 50s so there is some difference, and it was some time ago so hopefully medical knowledge has advanced. But he had developed that same super-human ability to make a compassionate compromise with the cards that life had thrown at him as you apparently have, and was, like you, prone to being wise. All the very best.

No problem. Thank you for your comments. They are making great advances understanding the disease. I took part in a trial drug myself and although it was not a success if you don't try you'll never know.

killanena · 01-08-2018 1:33pm

I know its awhile now but could you describe the craps you were getting in your calf's? I often get craps in either calf and its very painful, feels like the muscle is twisting itself in knots, I also get a twitch in my right arm by my elbow every so often.

Thank you for taking the time to answer our questions.

1hnr79jr65 · 01-08-2018 1:46pm

I've Motor Neuron Disease, AMA wrote: »

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.

Thanks for the clip, it helps some bit in the explanation. I would get some cramps in my right leg, sometimes at night and almost leap out of bed with the pain. For my right arm and hand i have had some feeling like a jolt or shake which at one point i believed may have been an early indicator of parkinsons.

The symptoms you have mentioned have made me think to possibly get a check up about these things that happen.

I have followed a few MND cases such as Marie Fleming and i have to admire her strength she showed in looking for right to die, i believe if i was ever diagnosied myself with this that i would choose to go to a dignitas clinic or some such once condition became unbearable for me as in not being able to do simple basic activities we take for granted every day.

Would you have a view yourself on the subject of the right to assisted suicide?

Call me Al · 01-08-2018 1:49pm

I dont have any questions. Ij ust wanted to wish you well.

I've Motor Neuron Disease, AMA · 01-08-2018 1:49pm

killanena wrote: »

I know its awhile now but could you describe the craps you were getting in your calf's? I often get craps in either calf and its very painful, feels like the muscle is twisting itself in knots, I also get a twitch in my right arm by my elbow every so often.

Thank you for taking the time to answer our questions.

Hi. For no reason a calf would cramp / spasm. It would tense up hard as a rock and last 20-30 seconds. I found the only way to relieve it is to stretch the leg.

There could be a million reasons for your twitch, stress etc. The odds of MND is 1 in 50,000. If you have any concerns contact your GP.

I've Motor Neuron Disease, AMA · 01-08-2018 1:52pm

Call me Al wrote: »

I dont have any questions. Ij ust wanted to wish you well.

Thank you very much.

Tom Mann Centuria · 01-08-2018 1:54pm

Hi OP, thanks for doing this.

Have you begun getting adaptations to your house yet, has this been a straightforward process?

Do you get physio, occupational therapy or Speech and Language therapy provided?

Wishing you the best luck possible going forward.

I've Motor Neuron Disease, AMA · 01-08-2018 2:12pm

Sour Lemonz wrote: »

Thanks for the clip, it helps some bit in the explanation. I would get some cramps in my right leg, sometimes at night and almost leap out of bed with the pain. For my right arm and hand i have had some feeling like a jolt or shake which at one point i believed may have been an early indicator of parkinsons.

The symptoms you have mentioned have made me think to possibly get a check up about these things that happen.

I have followed a few MND cases such as Marie Fleming and i have to admire her strength she showed in looking for right to die, i believe if i was ever diagnosied myself with this that i would choose to go to a dignitas clinic or some such once condition became unbearable for me as in not being able to do simple basic activities we take for granted every day.

Would you have a view yourself on the subject of the right to assisted suicide?

The main giveaway for MND is muscle wastage. My arms are alot thinner now compared to 3yrs ago. It would not do any harm to get checked out.

Looking back now I have some regrets, the biggest being that I did not have a life insurance policy in place. I was young and never thought too far ahead.

Assisted suicide is a tricky one. I think everyone should have the right to choose but I can see it creating issues where family members might feel pressured into agreeing to it. They may feel a burden or in the way.

I've Motor Neuron Disease, AMA · 01-08-2018 2:36pm

Tom Mann Centuria wrote: »

Hi OP, thanks for doing this.

Have you begun getting adaptations to your house yet, has this been a straightforward process?

Do you get physio, occupational therapy or Speech and Language therapy provided?

Wishing you the best luck possible going forward.

Hello they are very good questions.

Within an hour of my diagnosis we had professionals pushing terms like tube-fed, wheelchair bound, assisted breatheing at us.

I was put in touch with a local occupational therapist and the only way to best describe her is amazing. She came out and explained everything. Our only sleeping/toilet/shower facilities were upstairs so she advised us to build on. We have recently built on a groundfloor bedroom, wetroom and wheelchair access to the house with the aid of a grant. Without her help and the grant I can hand on heart say I would be currently sleeping on the sofa and peeing in a bucket.

I do physio every few weeks.

1hnr79jr65 · 01-08-2018 3:15pm

I've Motor Neuron Disease, AMA wrote: »

The main giveaway for MND is muscle wastage. My arms are alot thinner now compared to 3yrs ago. It would not do any harm to get checked out.

Looking back now I have some regrets, the biggest being that I did not have a life insurance policy in place. I was young and never thought too far ahead.

Assisted suicide is a tricky one. I think everyone should have the right to choose but I can see it creating issues where family members might feel pressured into agreeing to it. They may feel a burden or in the way.

From my own perspective i have spoken to family and my fiancee about my wishes, all are in agreement of what i would require.

I suppose its very important for anyone with such diagnoses to have this hard discussion so there is no confusion of what the exit pathway may be based on beliefs or wishes.

Anyhow thank you for your answers and wish you all the best in fighting this.

I've Motor Neuron Disease, AMA · 01-08-2018 3:33pm

Sour Lemonz wrote: »

From my own perspective i have spoken to family and my fiancee about my wishes, all are in agreement of what i would require.

I suppose its very important for anyone with such diagnoses to have this hard discussion so there is no confusion of what the exit pathway may be based on beliefs or wishes.

Anyhow thank you for your answers and wish you all the best in fighting this.

Yes i hope to put my own plan in place before things become too difficult.

Thank you and i hope your issue is something simple.

Riesen_Meal · 01-08-2018 3:43pm

I would like to wish you the best of luck on your journey, hopefully some kind of cure comes along...

Have you considered cannabis to try and treat it?

I know it can work wonder for people with Parkinson's disease...

I know MND is different than Parkinson's but I saw this video a while ago and it had me wondering could it be used?

https://www.youtube.com/watch?v=zNT8Zo_sfwo

I've Motor Neuron Disease, AMA · 01-08-2018 4:13pm

Fieldog wrote: »

I would like to wish you the best of luck on your journey, hopefully some kind of cure comes along...

Have you considered cannabis to try and treat it?

I know it can work wonder for people with Parkinson's disease...

I know MND is different than Parkinson's but I saw this video a while ago and it had me wondering could it be used?

https://www.youtube.com/watch?v=zNT8Zo_sfwo

Thank you.

I'm not sure. I have heard it can help with seizures but i have not heard anyone in the MND community mention it.

Campogna · 01-08-2018 4:43pm

Fieldog wrote: »

I would like to wish you the best of luck on your journey, hopefully some kind of cure comes along...

Have you considered cannabis to try and treat it?

I know it can work wonder for people with Parkinson's disease...

I know MND is different than Parkinson's but I saw this video a while ago and it had me wondering could it be used?

https://www.youtube.com/watch?v=zNT8Zo_sfwo

Hi I believe I can give a rudimentary answer on that.

Medical marijuana works well with Parkinson's because it inhibits the sporadic and uncontrolled firing of messages from the brain to nerve receptors, basically relaxing. However, with MND the brain is actually losing its ability to effectively communicate with nerve receptors in the body and no amount of 'relaxation' will be able to help revive unresponsive nerves. If anyone can correct me or confirm this as well that would be grand.

Medical marijuana is great for plenty of disorders but a degenerative disorder like this one needs to be stopped before it can wreak havoc on the nervous system. Maybe there is research on whether it can delay it.

Malayalam · 01-08-2018 4:48pm

Campogna wrote: »

Hi I believe I can give a rudimentary answer on that.

Medical marijuana works well with Parkinson's because it inhibits the sporadic and uncontrolled firing of messages from the brain to nerve receptors, basically relaxing. However, with MND the brain is actually losing its ability to effectively communicate with nerve receptors in the body and no amount of 'relaxation' will be able to help revive unresponsive nerves. If anyone can correct me or confirm this as well that would be grand.

Medical marijuana is great for plenty of disorders but a degenerative disorder like this one needs to be stopped before it can wreak havoc on the nervous system. Maybe there is research on whether it can delay it.

I am not going to advise the OP on what he should try in such a difficult condition but there is definitely research out there regarding neuroprotective properties of cannabis. One thing I regretted was not getting my Dad on it. Ditto psilocybin.

Now Ye're Talking - to someone with Motor Neuron Disease

Comments