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

Riesen_Meal · 01-08-2018 4:56pm

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.

Thank you for the detailed explanation of it, makes a lot of sense actually....

Ave Sodalis · 01-08-2018 4:58pm

What is your physio routine, if you don't mind me asking?

I've often wondered how something like MND would be managed from a physio perspective. I also just wanted to say thank you for doing this and I really wish you every bit of luck.

I've Motor Neuron Disease, AMA · 01-08-2018 5:10pm

Ave Sodalis wrote: »

What is your physio routine, if you don't mind me asking?

I've often wondered how something like MND would be managed from a physio perspective. I also just wanted to say thank you for doing this and I really wish you every bit of luck.

Hi. I do a lot of stretching exercises. My physio helps me hold on to the uses of grip, reach, etc.

She supplies me with different aids to keep me as mobile as possible. For example I use a splint on my hands. It is similar to a cast which keeps my fingers straight as they tend to curl.

Bicycle · 01-08-2018 5:30pm

Sending you a big hug.

My Dad died from MND just over 25 years ago. He was in his 70s. Its a horrible illness.

Well done for educating us all on it.

Thank you.

Damien360 · 01-08-2018 5:35pm

To my shame, I knew of MND by name but not the symthons or the agressive speed at which it progresses. Thanks for educating me in this thread so far and best of luck to you and your family.

Campogna · 01-08-2018 5:43pm

I wish all the best for you and your loved ones.

My question is not so much about the disease. Do you find yourself cherishing things you may not be able to do in the future? For example, do you love going outside more and the like or do you still find yourself focused on different aspects of your life?

jockeyboard · 01-08-2018 5:51pm

Thank you for answering questions.
Just wondered if you are in pain? Or just loss of movement/strength.
Have you read the book found my tribe written by a wife of man like yourself, I am only half way through but was surprised they decided to have more children after his diagnosis and when he was quiet immobile etc. Hope that's not rude. I only ment they had (I think) 3 kids and then she got pregnant again with twins. Just thought they had alot going on and I can barely manage mine own kids without myself or husband having something like mnd.
Again, really hope that dosnt come across rude or insensitive, just wondering kinda how much does your mnd play on day to day planning and future planning?

Teacher0101 · 01-08-2018 6:39pm

Hi,

My own father had MND and died from it some years ago. Is it familial or sporadic form that you have?
Do you have a list of things you want to do - or a go-fund me page for some of them?

I've Motor Neuron Disease, AMA · 01-08-2018 6:48pm

Bicycle wrote: »

Sending you a big hug.

My Dad died from MND just over 25 years ago. He was in his 70s. Its a horrible illness.

Well done for educating us all on it.

Thank you.

Thank you, i am still learning myself.

I've Motor Neuron Disease, AMA · 01-08-2018 6:52pm

Damien360 wrote: »

To my shame, I knew of MND by name but not the symthons or the agressive speed at which it progresses. Thanks for educating me in this thread so far and best of luck to you and your family.

Thanks. Progression rates vary wildly, some people pass away waiting on a diagnosis while others have it years. I know a man who has it 42 years.

I've Motor Neuron Disease, AMA · 01-08-2018 7:00pm

Campogna wrote: »

I wish all the best for you and your loved ones.

My question is not so much about the disease. Do you find yourself cherishing things you may not be able to do in the future? For example, do you love going outside more and the like or do you still find yourself focused on different aspects of your life?

Yes i really enjoy just sitting in the garden. I worked a lot of nights so didn't do much during the day.

I spend loads of time with family, go to the 3 arena and Aviva quite often, stuff i didn't do before as my priorities were wrong.

I've Motor Neuron Disease, AMA · 01-08-2018 7:16pm

jockeyboard wrote: »

Thank you for answering questions.
Just wondered if you are in pain? Or just loss of movement/strength.
Have you read the book found my tribe written by a wife of man like yourself, I am only half way through but was surprised they decided to have more children after his diagnosis and when he was quiet immobile etc. Hope that's not rude. I only ment they had (I think) 3 kids and then she got pregnant again with twins. Just thought they had alot going on and I can barely manage mine own kids without myself or husband having something like mnd.
Again, really hope that dosnt come across rude or insensitive, just wondering kinda how much does your mnd play on day to day planning and future planning?

I'm thankful that i am not in any pain.

I know of that man, Simon Fitzmaurice. I'd highly recommend you read and watch "Its Not Yet Dark" about his life. I have not read Ruth's book. I'm not sure about the pregnancy, maybe it was unexpected.

At the beginning everything was MND, it was all i ever thought about. As time passes i realise its only a part of my life. I don't let it get in the way of the things i enjoy.

andreoilin · 01-08-2018 8:08pm

Hi there, thank you for sharing your story with us. Incredibly brave. How do you stay positive in the face of such a life-changing disease?

I've Motor Neuron Disease, AMA · 01-08-2018 9:09pm

Teacher0101 wrote: »

Hi,

My own father had MND and died from it some years ago. Is it familial or sporadic form that you have?
Do you have a list of things you want to do - or a go-fund me page for some of them?

Hi sorry to hear about your dad. My MND is sporadic as i was told around 90% is.

I have done some fundraising for the IMNDA and we have done a few personal ones. We got to do some family stuff together, my highlight has been bringing the kids to Lapland, it was just magical.

Teacher0101 · 01-08-2018 9:14pm

You could look into doing a go fund me to go somewhere else with the kids.

I know some people aren't mad on the idea of 'Go Fund me' (as in they might think it's going cap in hand), but great memories would be made. I was 19 when my father passed and 16 when he got it and fairly rapidly went downhill, so I know you're young and the three year time they give to older people doesn't apply to you. But you know this yourself, make as many memories as you can.

Just wondering, do you think you've come to terms with it and do you take any anti-depressants?

It sounds like you've a great support base which is essential.

I've Motor Neuron Disease, AMA · 01-08-2018 9:26pm

andreoilin wrote: »

Hi there, thank you for sharing your story with us. Incredibly brave. How do you stay positive in the face of such a life-changing disease?

Hi.

Don't get me wrong not everyday is great. When i was diagnosed i was crushed. The day i received that news i had a 2yr old and a new baby and for a while i wasn't a nice person to be around. But we find good in every day even if its something as small as going out for a pizza.

forgodssake · 01-08-2018 9:40pm

I don't have any proper questions really ,just you come across so positive and I was wondering if there is anything you have started doing ,since you found out you had this disease , that you find takes your mind off of it for however long it may be ? I also have an illness(nothing related to MND ) and since finding out I've been struggling to enjoy everyday things . Also I would like to thank you for sharing your story and wish you all the best in the future .

I've Motor Neuron Disease, AMA · 01-08-2018 10:02pm

Teacher0101 wrote: »

You could look into doing a go fund me to go somewhere else with the kids.

I know some people aren't mad on the idea of 'Go Fund me' (as in they might think it's going cap in hand), but great memories would be made. I was 19 when my father passed and 16 when he got it and fairly rapidly went downhill, so I know you're young and the three year time they give to older people doesn't apply to you. But you know this yourself, make as many memories as you can.

Just wondering, do you think you've come to terms with it and do you take any anti-depressants?

It sounds like you've a great support base which is essential.

Yes we have a few trips planned.

I don't think i'll ever accept it but i've learn to live with it better. I don't take any medication.

The support is great and getting better everyday.

fishy_fishy · 02-08-2018 12:37am

Thanks for taking the time to do this. You're very kind to take the time to do this and educate us all a bit more. I hope my questions are okay.

I suppose people are normally older when diagnosed and the people around them have more experience dealing with bad news, but you were very young being diagnosed and I can't imagine your friends had a lot of experience to draw from.
Did people surprise you? What did you find was the best & worst way for people to take the news and behave afterwards? Like, was it worse for people to get upset or to bury their heads in the sand and pretend nothing happened?

You've alluded to having had your priorities wrong before the diagnosis. I suppose in theory we all know the concept that we don't spend enough quality time with our loved ones. But real life comes into play and bills have to be paid and that sort of thing. Do you think there are little changes that people could make a difference?

I've Motor Neuron Disease, AMA · 02-08-2018 11:31am

forgodssake wrote: »

I don't have any proper questions really ,just you come across so positive and I was wondering if there is anything you have started doing ,since you found out you had this disease , that you find takes your mind off of it for however long it may be ? I also have an illness(nothing related to MND ) and since finding out I've been struggling to enjoy everyday things . Also I would like to thank you for sharing your story and wish you all the best in the future .

Hi before i was diagnosed all i had on my mind was work and bills, worrying about stuff. I believe a lot of conditions are stress related.

Now I tend not to worry about things, if a bill gets paid on time then it gets paid and if it is a day late then that is life. I have enjoyed little things like having lunch out, sitting in the garden and having time to watch some Netflix since i retired and what will be will be. You cannot buy time so i'm going to enjoy my time.

I've Motor Neuron Disease, AMA · 02-08-2018 1:58pm

fishy_fishy wrote: »

Thanks for taking the time to do this. You're very kind to take the time to do this and educate us all a bit more. I hope my questions are okay.

I suppose people are normally older when diagnosed and the people around them have more experience dealing with bad news, but you were very young being diagnosed and I can't imagine your friends had a lot of experience to draw from.
Did people surprise you? What did you find was the best & worst way for people to take the news and behave afterwards? Like, was it worse for people to get upset or to bury their heads in the sand and pretend nothing happened?

You've alluded to having had your priorities wrong before the diagnosis. I suppose in theory we all know the concept that we don't spend enough quality time with our loved ones. But real life comes into play and bills have to be paid and that sort of thing. Do you think there are little changes that people could make a difference?

Hi very good questions.

Some of my family and friends swamped me with info, opinions and advice and others stayed away not knowing what to say. Some advised me to get a 2nd opinion which i did.

The worst.... i got a call one day shortly after diagnosis to say my mam was seen walking the roads miles from home. I knew something was wrong so i confronted her and she broke down and told me my dad had looked into my disease and refused to get out of bed. That was tough so i called a family meeting and told them that i can live with MND or die from it. Since then we've had a good 3.5yrs and they know if i go in the morning i've enjoyed my time.

The good.... a mate ringing to say we're going to a match and don't be giving me any of that auld disabled cobblers, you're coming. Its great to have a laugh and not let a disability get in the way of life.

razorblunt · 02-08-2018 2:15pm

I don't have any questions but MND terrifies me. You're incredibly brave facing up to this and I wish you well as you battle it.

mittimitti · 02-08-2018 2:50pm

Do you have a disabled badge for the car
If yes do you get any comments from people when using it

I've Motor Neuron Disease, AMA · 02-08-2018 6:53pm

razorblunt wrote: »

I don't have any questions but MND terrifies me. You're incredibly brave facing up to this and I wish you well as you battle it.

Thanks, it is what it is.

flatty · 02-08-2018 7:01pm

Best wishes. I am speechless otherwise, and humbled.

I've Motor Neuron Disease, AMA · 02-08-2018 7:01pm

mittimitti wrote: »

Do you have a disabled badge for the car
If yes do you get any comments from people when using it

Yes i have one. No comments but a few funny looks at the start, i use a walking stick now and only use a space if i need to.

I was in Tesco earlier, 6 disabled spaces with 3 already taken. ALL 3 cars had no badge. I don't say anything, you can't argue with ignorance. Sometimes i'm ashamed to be Irish. Tesco don't give a toss either.

I've Motor Neuron Disease, AMA · 02-08-2018 7:36pm

flatty wrote: »

Best wishes. I am speechless otherwise, and humbled.

Hi thanks, i suppose i've realised MND is only a small part of my life and makes me appreciate the simple things.

Damien360 · 02-08-2018 8:59pm

I've Motor Neuron Disease, AMA wrote: »

mittimitti wrote: »

Do you have a disabled badge for the car
If yes do you get any comments from people when using it

Yes i have one. No comments but a few funny looks at the start, i use a walking stick now and only use a space if i need to.

I was in Tesco earlier, 6 disabled spaces with 3 already taken. ALL 3 cars had no badge. I don't say anything, you can't argue with ignorance. Sometimes i'm ashamed to be Irish. Tesco don't give a toss either.

I have said this story a few years ago on boards and I think you should do the same.

The same situation occured with parking in Dunnes Newbridge a few years ago in relation to disabled parking. A man I know had a sister (passed away since) with severe mental and physical disabilities. They found spaces taken by cars without badges. They parked across the cars in question (no choice and it wasn't in malice) blocking them in and went to do their shop. Came out to a hullabaloo complete with gardai. Once the owners saw his sister approach, there was silence. Not a single complaint. This was before the gardai could enforce this on private property. I hope it was a lesson learned for all those in question.

orthsquel · 02-08-2018 10:11pm

Thanks very much for doing this AMA.... would you spend a lot of time in hospitals getting tests, or do you have to travel to a specific one, or just see a specialist? If something happened while out on a family day with family, would a local public hospital be suitability medically equipped or have any services that you'd need?

Do people treat you differently since your diagnosis?

How would you like someone to approach you about your illness e.g. maybe someone you don't really know, or an old friend, to talk about it?

byhookorbycrook · 02-08-2018 10:14pm

I've Motor Neuron Disease, AMA wrote: »

Yes i have one. No comments but a few funny looks at the start, i use a walking stick now and only use a space if i need to.

I was in Tesco earlier, 6 disabled spaces with 3 already taken. ALL 3 cars had no badge. I don't say anything, you can't argue with ignorance. Sometimes i'm ashamed to be Irish. Tesco don't give a toss either.

Person with MS here and blue badge holder. Parking behind such b@stards and hobbling off usually gets them to move.

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

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