Motor Neurone Disease

[Bikernereid]

I was wondering if anyone has had any experience of motor neurone disease and if they could give me a little more information. I know what it is but have no experience of anyone I know having it until now and would really like to get some clue as to just what it is like for the person that has it. Thanks

[Finn]

I don't think there are any doctors in the house so perhaps Google is your friend...

[Nasty]

I have had three family members pass away from the disease ... I can only tell you what we have expereinced ... and everyones experience is different. Relying on google can help, but don't trust it above what doctors say - remembering it picks up shit as well as treasure.

[ManDownUnder]

Suggested starting place

http://en.wikipedia.org/wiki/Motor_Neurone_Disease

... good luck.

[007XX]

Errrr...guys! I think our lovely Nymph was asking for any recounts from people's personal experiences with the disease, so as to know how it affects people, what the impact emotionally and maybe physically are...

As much as Google and the likes can offer some feedback, it never really explains the "human impact" better than someone's recollection of the events.

Lily, bear in mind this will be a sensitive subject for some people, and they may not feel like sharing. Hope you get to cope with it ok chick, be it for yourself or the person you know who has it.

[skelstar]

Heres NZ Motor Neuron Disease Assoc (http://www.mndanz.org.nz/) webpage. Didn't read the whole thing but maybe that is a support group.

[Badjelly]

Do be aware that there are various different causes for MND (some genetic, some not known to be) and that not all people with the disease progress the same way.

[Mikkel]

Hmmm, I've only heard of it as amyotrophic lateral sclerosis(ALS). If it is indeed the same disease I guess that the phrasing that describes it the best would be:

"ALS - the disease of which no doctors die." :eek:

[Bikernereid]

I have an understanding of the disease but I would like to hear from anyone that has witnessed what it is like to live with the disease. I know this maybe a sensitive subject for some people but I have today found out that my uncle has the disease and we have no experience of it previously in my family.

I want to be able to support my aunt and uncle as much as possible but need to understand what lies ahead for him.

[Edbear]

I have a friend who is suffering from it right now and has maybe a couple of months left. My father had MS and the effects are similar. Think of it as MS in overdrive and no brakes.

Most of these illnesses have similar apparent symptoms and it can be difficult for Doctors to diagnose whether it be MS, CMT, ALS or another. MN is rare but can usually be readily diagnosed. All are cruel diseases.

I hesitated to answer this, as I don't know your reasons for asking.

[Edbear]

Oh! We obviously posted about the same time. My sympathies and thoughts are with your family. I'm sure the Doctors will be giving your Uncle the best care and I hope he has a good prognosis.

[Bikernereid]

He is going private as the good old NHS which has paid into all his life has had him waiting for over 6 months now to see someone.

Hopefully he will know shortly which type of MND he hs and we will have a beeter idea of what to expect.

Thanks for your posts. x


Oh! We obviously posted about the same time. My sympathies and thoughts are with your family. I'm sure the Doctors will be giving your Uncle the best care and I hope he has a good prognosis.

[RiderInBlack]

One of the many jobs I've had included providing 24hr care for a lady with MND. It effects everyone differently depending on the muscle groups effect. It can progress fast or go dormant.
Jill had been diagnosed with MND for 9years before I start looking after her. She die of complications due to the damage MND had done to her body years before around 20yrs after diagnoses.
One really important thing I learned from her (and others I meet with MND), that it is a "use it or loose it" disease. If you don't use the weakened muscle group ya can loose the ability ta use it altogether. It's a bloody hard one ta deal with because loosing the ability to do things easily is very depressing. But if ya sulk in ya depression and not work that muscle group ya loose even more ability, which increases ya depression.... and so it goes on. Most people don't get past 2years with MND after diagnoses. Most die because of their swallowing ability is effected. Many loose their ability to speak easily and often loose that altogether making communication very hard. By the way their ability to think is unaffected.
Jill, despite the damage done by MND, lived a very full life (more than most of use). She traveled, had a ride on the back of a bike, and did a tandem sky dive (among many things she did) while affected by MND. Her husband had left her for one of her caregivers just before I started as her caregiver, and she found someone else 5yrs later and married. He stayed with her to the end.
She loved live and lived it to the fullest. If only we could all say the same.

Could say much more here. Wish ya Uncle all the best. It's a harsh Disease. All I can recommend to him is fight it all the way. "Never give up. Never surrender" (Galaxy Quest). Don't wait. Do as much as ya can while ya can.

[Conquiztador]

The loss of independence is the part that is hardest to take. Someone used to be active and independent suddenly not being able to carry out basic tasks can be very embarrasing and demoralising.

Look at a local support group.

All the best

[Bikernereid]

It is the depression that may result from the wasting of the muscle etc that worries me the most. My uncle has always been such an active person and I think that being reliant on others and not being able to do what he usually can do will really knock him for six.

Hopefully if we can get him the right physion support etc this might help to stave off some of the feelings of helplessness etc.




The loss of independence is the part that is hardest to take. Someone used to be active and independent suddenly not being able to carry out basic tasks can be very embarrasing and demoralising.

Look at a local support group.

All the best

[RiderInBlack]

Hopefully if we can get him the right physion support etc this might help to stave off some of the feelings of helplessness etc.Right mental support is really important too. Don't "Mother" him too much. Remind him that his mind is an asset. His life experience is irreplaceable knowledge. Jill used ta call herself In-valid (her play on invalid). Had ta remind her how important she was to those around her. If she didn't fight her ex to ensure her two kids had they share of the farm, they wouldn't have had the backing in life that they have had. She also put a lot of time helping the MNS soc. get started. She owned and run 11 Commercial Rentals. Most of this was done via the special PC she had set-up for her. She also made sure ta get out and about. She was a key person in her area. Definitely not in-valid.

[Soul.Trader]

The only knowledge I had of this disease is that one of my most admired individuals has it - Steven Hawking. He has lived WELL past his prognosis, and has achieved immeasurable accomplishments for science.

[Bikernereid]

Believe me with the amount of tragedy that our family has gone through we are not the mothering or pandering type of family. We are very grounded and are more practical than most regarding illnesses. That is not to say that we don't care we just have a very pragmatic approach. Luckily we are a very close family and we will always be there for each other.

I will pass on this information to my uncle, aunt and cousins as I am sure they would really like to hear about such a positive person and what she has achieved. It sounds as if she really has had a positive influence on you and that you have a great deal of respect for her.

Thanks again for this I really do appreciate you taking the time to tell me more about this lady and how she dealt eith her illness.



Right mental support is really important too. Don't "Mother" him too much. Remind him that his mind is an asset. His life experience is irreplaceable knowledge. Jill used ta call herself In-valid (her play on invalid). How ta remind her how important she was to those around her. If she didn't fight her ex to ensure her two kids had they share of the farm, they wouldn't have had the backing in life that they have had. She also put a lot of time helping the MNS soc. get started. She owned and run 11 Commercial Rentals. Most of this was done via the special PC she had set-up for her. She also made sure ta get out and about. She was a key person in her area. Definitely not in-valid.

[Bikernereid]

Can who ever sent the red rep re: I too have this tragedy how we deal with it is diacritic please PM me as I have no idea what you are on about.