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AP1978
19th August 2013, 05:26
My lovely courageous mum has been living with bulbar MND since Dec 2010. She's going through a really tough time at the minute, been really poorly with a chest infection since last Tuesday. Her breathing has deteriorated and has needed to use her bipap machine in the daytime as well as the night. Shes also been prescribed Diazepam to calm her breathing. I really am looking for advice re: Tracheostomy and if anybody knows if its something that is given for MND sufferers?? I asked respritary team a while back about this and they seemed to brush me off the idea. Just want any advice please, my family are all doing the caring for mum and its so tough for us to watch right now. X

john
19th August 2013, 06:05
Hi AP,

Welcome to the forum and as ever sorry you need to be here. In the U S and Japan tracheotomy is fairly common for mnd sufferers but not here. In the US there are people who live on for years after the procedure but it is a fairly restricted lifestyle and possibly not something everyone could accept. I visit a website (alstdi) where a young(in his thirties) lawyer with a months old daughter has decided to go for it as he wishes to see her grow up. I do not know how you go about exercising rights if your Mum decided she would want the procedure. I would suggest you have a chat with the people at mnda connect and take their advice. Your first port of call logically would be Mum's GP but I do not know if they are obliged to if you make a request. You probably also need to have a long talk with your Mum to get her views on the subject. We all want our loved ones around us for ever naturally but if that means they have no quality of life is that then fair on them?

Sorry I haven't really answered your question but it is pretty massive.

John

AP1978
19th August 2013, 08:12
Thank you John for the reply. Any reply is a help. We will look into this. Had a bad night with her last night. So distressed x

Andrew
19th August 2013, 09:04
Thank you John for the reply. Any reply is a help. We will look into this. Had a bad night with her last night. So distressed x

Hi AP,

Welcome to the forum. You may already know this, but the Association has a helpline which is a good contact for support and information about MND. You can call our MND Connect Team on 08457 626262 or e-mail mndconnect@mndassociation.org.

Connect is available 9am to 5pm and 7pm to 10.30pm Mondays to Fridays. Calls charged at local rate.

I hope this helps.

Best wishes,

Andrew

ccinjersey
19th August 2013, 13:11
H AP

Having worked in the hospital for 15 years. Have seen many patients with Traches, and the care required of them to avoid complications. It is an invasive procedure, I would recommend doing your research before putting your Mom thru it. There are other less invasive options like a venti mask that might help her. Also I would make sure the risks don’t outweigh the benefits. Personally, not one I would jump to unless absolutely necessary with no other options available.

Good luck
CC

AP1978
19th August 2013, 14:35
Thank you Andrew, yes I am aware of MND Connect. Will contact for advice.

AP1978
19th August 2013, 14:38
Thank you cc, I appreciate any thoughts on this so will take everything into consideration, decisions are so difficult aren't they in this situation x

magic
19th August 2013, 16:06
Hi, Peter spends about 16 hours in 24 on the Nippy machine. He was having a dreadful time coughing and choking and had the PEG procedure about six weeks ago. Since then he had a chest infection and drastically reduced food taken orally. The change has been remarkable. So little coughing and no choking.. He was diagnosed a year after your Mum. It was suggested, before the PEG procedure, that he may have difficulty coming around from the anaesthetic and could need a tracheotomy.i had not heard of it being a life lengthening condition. It turned out he did not need the tracheotomy to recover from the operation. D not know if this is of any help.

Magic

pete
19th August 2013, 16:30
Hi AP1978,

Just read your post and very sorry to hear your Mums having a bad time with the chest infection ,that in itself can be very weakening I speak from experience as I too suffer from Bulbar MND and have done for a few years,what i can say is no team will undertake any action unless it is absolutley vital and no surgery comes without other risks so you can rest assured that this is one decision you wont have to make it will be largely Mums choice and that of the various care specialists who will only agree to any procedure if there is both a good chance of improving her situation and that there really is no other choice, as the other guys have already said it is in no way a routine action and has never come up in any conversation we have had with Respiritory specialists or Neurologists. So I wish your Mum all the very best and hope she manages to overcome the infection quickly ,it can be very scary to watch and to be honest no fun to be the one who is suffering it ! ,fingers crossed for you all .

Regards
pete

AP1978
19th August 2013, 21:07
Thanks guys, its a big help reading your comments. Mum had the rig last September, I was nearly due to give birth, it was not fun sleeping in the recliner! Mum couldn't have general when it was fitted so had it done under a local, she was so brave.
Pete, I never realised how much someone could suffer with a chest infection! You are right when you say it takes it out of you. Im just praying she'll get through it x

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