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

heldel00 · 02-08-2018 10:24pm

You have really given me the kick up the arse i needed.
I'm was in Beaumont again today with Dr Mullins (what an absolute gent) and was feeling deperate sorry for myself all evening.
Long story short i got a virus after birth of baby that attacked auxillary(sp?) nerve and has left my shoulder temporarily paralysed. I repeat, temporarily. I've been going around for months complaining because i can't lift baby properly, give her a bath or reach up to the press for a cup.
I will recover from this and reading back over this AMA has left me fúcking ashamed of myself.
Your positivity is inspirational. All the best to you and your family x

I've Motor Neuron Disease, AMA · 03-08-2018 11:10am

Damien360 wrote: »

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.

Hi i'd be afraid someone would damage the car.

Can the gardai enforce in a private carpark?

I've Motor Neuron Disease, AMA · 03-08-2018 11:27am

orthsquel wrote: »

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?

In the first 2 years i went to Beaumount quite often for check ups and research. I don't go anymore as it takes a whole day and we've young kids, i have a local care team also. The only problem i would having out is if i have a fall i do not have the strength to get up on my feet so i can't be left alone unless in a wheelchair.

Some people don't know what to say but i'm still me, because i'm disabled doesn't change that.

I've Motor Neuron Disease, AMA · 03-08-2018 11:36am

byhookorbycrook wrote: »

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

Hi how is MS treating you?

I'd love to but would worry about damage to my car.

I've Motor Neuron Disease, AMA · 03-08-2018 11:52am

heldel00 wrote: »

You have really given me the kick up the arse i needed.
I'm was in Beaumont again today with Dr Mullins (what an absolute gent) and was feeling deperate sorry for myself all evening.
Long story short i got a virus after birth of baby that attacked auxillary(sp?) nerve and has left my shoulder temporarily paralysed. I repeat, temporarily. I've been going around for months complaining because i can't lift baby properly, give her a bath or reach up to the press for a cup.
I will recover from this and reading back over this AMA has left me fúcking ashamed of myself.
Your positivity is inspirational. All the best to you and your family x

Congratulations on your baby. I do understand, its horrible being restricted and not being able to do things like i can't lift my arms high enough to wash my hair. Its so frustrating. But i'm delighted you will recover for it. Your health truly is your wealth

MAJJ · 03-08-2018 1:02pm

Thank you for sharing and helping me learn and understand. I wish you and your family all the very best.

flatty · 03-08-2018 3:40pm

I have a couple of further questions which may be insensitive, I don't know, but here goes
1. How do ye make ends meet? Is money a worry?
2. This is the possibly insensitive one, but is Ireland a good country to have a serious long term illness in, and does/would this depend upon private insurance?

Liamario · 03-08-2018 4:39pm

Are you/were you angry about it? Has it changed your worldview?

antodeco · 03-08-2018 9:11pm

My father in law (early 60s) died 2 years ago from MND after only 6 months after being diagnosed with it. He had lived with us for the previous 15 years. We saw him going from quite active to a very thin very quickly. It's something i would never wish upon anyone, and it's great to see you here answering questions.

Myestion for you is, separate to the lack of muscle / cramping, what would be the no 1 thing that has affected you the most and how have you handled it?

Spr1ngsteen · 03-08-2018 9:44pm

Thanks for doing this. My father died from this horrible illness when he was 40. I was 11 when he passed away.

Since I've grown up (I'm not far off 40 myself now) I've often wished for a moment where I could talk to him once more and commend him for fighting this disease as hard as he did, and for being so brave in the face of what he knew was to come. I don't know where someone finds the strength to carry on with positivity as he did and as you appear to be doing. I have nothing but admiration for you. I wish you all the very best

I've Motor Neuron Disease, AMA · 03-08-2018 10:45pm

MAJJ wrote: »

Thank you for sharing and helping me learn and understand. I wish you and your family all the very best.

Thank you, i am still learning myself.

I've Motor Neuron Disease, AMA · 03-08-2018 11:06pm

flatty wrote: »

I have a couple of further questions which may be insensitive, I don't know, but here goes
1. How do ye make ends meet? Is money a worry?
2. This is the possibly insensitive one, but is Ireland a good country to have a serious long term illness in, and does/would this depend upon private insurance?

Hi we make do with what we have. I'm on a state pension and my wife is my carer. Our income is nowhere near what it was but we manage.

A lot give out about the health system and some have good reason to but from my point of view....i have a medical card which allows me to see a GP if needed,
a physio and occupational therapist on my care team for vital support and equipment. I got a grant to help towards adapting my home and i have the IMNDA for support also.

I'd say i'm blessed to have this in my time of need.

I've Motor Neuron Disease, AMA · 03-08-2018 11:09pm

Liamario wrote: »

Are you/were you angry about it? Has it changed your worldview?

Hi i was very bitter at the start but i've learned to live with it.

I'm more easy going now.

I've Motor Neuron Disease, AMA · 04-08-2018 12:23am

antodeco wrote: »

My father in law (early 60s) died 2 years ago from MND after only 6 months after being diagnosed with it. He had lived with us for the previous 15 years. We saw him going from quite active to a very thin very quickly. It's something i would never wish upon anyone, and it's great to see you here answering questions.

Myestion for you is, separate to the lack of muscle / cramping, what would be the no 1 thing that has affected you the most and how have you handled it?

Hi sorry to hear about your FIL, that was a fast progression.

I can get by with most things with a little help. I have a 3yr old and a 5yr old and the hardest thing for me so far is explaining to them what is wrong with me. They don't understand why i can't push them on a swing or chase them and look confused when i fall.

I've Motor Neuron Disease, AMA · 04-08-2018 12:26am

Spr1ngsteen wrote: »

Thanks for doing this. My father died from this horrible illness when he was 40. I was 11 when he passed away.

Since I've grown up (I'm not far off 40 myself now) I've often wished for a moment where I could talk to him once more and commend him for fighting this disease as hard as he did, and for being so brave in the face of what he knew was to come. I don't know where someone finds the strength to carry on with positivity as he did and as you appear to be doing. I have nothing but admiration for you. I wish you all the very best

Thanks and i'm sorry to hear about your father.

Moocifer · 04-08-2018 7:12pm

Hi I have no questions I just want to thank you for doing this AMA. I've had relatives with the BP form of MND as well as ALS so unfortunately I know more about this disease that I ever wished to.

I also have to thank the IMDA they do such fantastic work.

I've Motor Neuron Disease, AMA · 05-08-2018 12:20pm

Moocifer wrote: »

Hi I have no questions I just want to thank you for doing this AMA. I've had relatives with the BP form of MND as well as ALS so unfortunately I know more about this disease that I ever wished to.

I also have to thank the IMDA they do such fantastic work.

Hi thanks, i don't have great knowledge of BP but i know it progresses fast. I'm thankful it has not attacked my bulbar area yet.

The IMNDA are amazing and did you know around 84% of their annual funds comes directly from public fundraising

Moocifer · 05-08-2018 8:14pm

I still do some fund raising for the IMNDA I can never do enough for them after all the help they gave us.

Jeff2 · 06-08-2018 2:50am

Why am I redirected to here.?

Jeff2 · 06-08-2018 2:53am

The top of the page is green and pictures show up.
No.,its not me yet.

dave3 · 06-08-2018 8:12pm

Hi

Sorry to hear about your illness. I'm curious about a couple of things and have a few questions. Feel free to ignore any that are inappropriate.

Do you have any regular contact with other people with mnd. What do the nurses with the charity do with you. Do they visit you at home or is it just a phone call every few weeks. Do you have to go to the GP on a regular basis or do you visit a consultant in your local hospital. Do you go to respite care of any sort. Do you have any contact with other charities like the wheelchair association.
How do your friends and family treat you. Do they act the same as before or do you find some of them avoiding you because they don't know what to say or how to act around you. Do members of the public help like holding doors open and all or do they treat you like an idiot.

Thanks for sharing your time with us.

Dave.

flatty · 06-08-2018 11:16pm

May I ask one more set of questions? I find your stoicism and outlook absolutely inspiring.
Are you afraid, and if so, of what?
Has the degree and/or nature of fear changed for you?
I/we are all afraid of relatively meaningless crap, I wonder how the diagnosis has affected you in this way. Please don't answer if you don't want to.

I've Motor Neuron Disease, AMA · 07-08-2018 12:19am

Moocifer wrote: »

I still do some fund raising for the IMNDA I can never do enough for them after all the help they gave us.

Do you mind me asking a bit more about your experiences? I learn as i go also.

I've Motor Neuron Disease, AMA · 07-08-2018 12:21am

Jeff2 wrote: »

Why am I redirected to here.?

Hi i am not sure why thats happening.

Jeff2 · 07-08-2018 12:40am

I've Motor Neuron Disease, AMA wrote: »

Hi i am not sure why thats happening.

Sorry.
It just redirected me here a few times and likely something I touched on touch screen on my phone.

I deleted cookies and cache and sorted.
Sorry again but it was very confusing to me.

I've Motor Neuron Disease, AMA · 07-08-2018 12:41am

dave3 wrote: »

Hi

Sorry to hear about your illness. I'm curious about a couple of things and have a few questions. Feel free to ignore any that are inappropriate.

Do you have any regular contact with other people with mnd. What do the nurses with the charity do with you. Do they visit you at home or is it just a phone call every few weeks. Do you have to go to the GP on a regular basis or do you visit a consultant in your local hospital. Do you go to respite care of any sort. Do you have any contact with other charities like the wheelchair association.
How do your friends and family treat you. Do they act the same as before or do you find some of them avoiding you because they don't know what to say or how to act around you. Do members of the public help like holding doors open and all or do they treat you like an idiot.

Thanks for sharing your time with us.

Dave.

Hi yes i have met many people with MND, some i keep in touch with and some who we've lost along the way.

My MND nurse and the IMNDA keep in regular touch for support and equipment. Recently they have supplied me with a V-Amat toilet seat which does a wash / dry to allow me keep some independence.

I don't go to hospital as i have a local care team. I see my GP only when i need to. No respite yet but that may change.

Family and friends were odd at the start but are around me long enough now to know i like normality. 90% of the public are fantastic, my biggest worry is being bumped into and knocked over.

I've Motor Neuron Disease, AMA · 07-08-2018 4:46pm

flatty wrote: »

May I ask one more set of questions? I find your stoicism and outlook absolutely inspiring.
Are you afraid, and if so, of what?
Has the degree and/or nature of fear changed for you?
I/we are all afraid of relatively meaningless crap, I wonder how the diagnosis has affected you in this way. Please don't answer if you don't want to.

There's many things i'm worried about.... death, where we go after death. Is death it or is there more?

Will i carry this disease with me to whatever is next? Will i pass this disease to my kids? Will my family be ok after i'm gone.

I do have fears of what is to come but i try to take things a day at a time.

Moocifer · 07-08-2018 8:08pm

In terms of passing it on there is a test that can be done to see if it's genetic. Unfortunately it's that form that runs through my family so I've opted not to be tested.

In terms of the IMNDA they provided equipment, organised a lot of stuff for us, provided a shoulder when ever we needed it and also gave us a grant as we were waiting carers to come through. It was my Dad that had it and unfortunately it was rapid onset ALS so it only took four months for him to loose all use of his upper and lower body.

Good luck to you in dealing with it, I'm hopeful that a cure will be found shortly. The amount of research that has come about because of the ice bucket challenge has been fantastic. There have been more developments since then that there were for years.

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

Moocifer wrote: »

In terms of passing it on there is a test that can be done to see if it's genetic. Unfortunately it's that form that runs through my family so I've opted not to be tested.

In terms of the IMNDA they provided equipment, organised a lot of stuff for us, provided a shoulder when ever we needed it and also gave us a grant as we were waiting carers to come through. It was my Dad that had it and unfortunately it was rapid onset ALS so it only took four months for him to loose all use of his upper and lower body.

Good luck to you in dealing with it, I'm hopeful that a cure will be found shortly. The amount of research that has come about because of the ice bucket challenge has been fantastic. There have been more developments since then that there were for years.

I didn't know there was a test but i understand your reasons for not doing it.

Sorry to hear it was your father.

I've Motor Neuron Disease, AMA · 08-08-2018 10:31pm

Thank you all for your questions and good wishes.

I hope i've raised a little bit of awareness of what is a truly devastating disease.

Who knows maybe we'll cross paths again one day.

Good health to you all. Andy

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

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