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Alan Norman
9th January 2011, 18:26
Hi people. Just joined this site as thought it might be useful as my Dad has this terrible condition and thought it would be helpful to hear other peoples views.

My Dad was diagnosed about 3 years ago with the ALS type and his brother died last year of a more aggressive type. My Dad is only 61 and it's a bitter pill to swallow.

His condition is that he is permanently wheel chair bound, has no use of his legs, his neck is starting to go a bit funny too in the way that his shirt collars no longer fit him (is this a 'normal' thing?!?) Use of his hands is very limited and life is becoming very difficult, especially for my mum who is his full time carer. It all kind of hit home today when we took him out for the first time since October last year and the logistics of getting him in the car, out of the car etc..........was a nightmare.

The scariest thing is when he was eating he came very close to choking on his food and we really thought he was going to die, it was only after what seemed like an age that he managed to regain his breath. He said his food just 'went down the wrong hole'. I have no real knowledge of this condition so basically is this normal for the breathing problems? (he does have a machine he has been using at nights for over a year) Also how progressed is the disease when it at the stage where he has trouble breathing, his body is virtually useless and also he just seems so distant?

For me it would be nice to hear from other people with the problem and see what you have to say, rather than doctors who can be so clinical at times.

Many thanks and apologies for any ignorance that might have come across.

Alan.

Jenni
9th January 2011, 19:37
Hi Alan,
Thanks for posting. MND is different for everyone, so please don't worry about sounding like a stuck record (which you don't by the way), we're all here because we've had experience in one way or another.
I'm sorry to hear about your dad and your uncle, it must be terrible to have two people you care about be diagnosed with MND. Various people on here have stories of difficulties with all aspects of the disease, physical and emotional. We're all here to support one another, so I hope you feel welcome here.

Jenni

Countyboy
9th January 2011, 20:57
Hi Jenni, If your dad is having trouble eating, then it is time to arrange for him to have a peg tube fitted. This is normally quite a simple process done with the patient fully awake. When I had mine fitted it took less that half an hour to be taken from the ward, have the tube fitted, and return to the ward. Your father can then be fed liquid feeds via a pump, it sounds worse than it is. He will need to have a few tests first, one of which will be a scan on his lungs and stomach but, this is only to ensure his lungs and stomach are aligned properly. If they are not then a second option will be offered. After saying that I have in 13 years of living with this disease known one person who has failed, all others have their peg tubes fitted.

I hope this will be of use to you.

CB.

Hillwalker
10th January 2011, 22:08
Hello Alan, As Countyboy says it might be time to consider having a PEG fitted. The process is relatively benign. My wife had one fitted in the summer and feeding through the peg is a straitforward process and gives a high level of nurtrients vitamins and essential minerals. It is better to have it fitted before it is needed. It might be wise to start the discussion with your GP/neurologist now. By the way it might also be worth you looking at the following forum which has been going for many years now populated by some very experienced people mnd sufferers and carers some of whom are on this site as well. There is search facility allowing you to go back over years of posts, many of which will give you an insight into this cruel disease. http://www.magimedia.co.uk/buildforum Good luck

Hillwalker

Countyboy
10th January 2011, 22:25
Hi Alan, Please accept my sincere apologies for mixing you up with Jenni. It must be age related.

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