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Rachelg
16th January 2012, 21:10
Hi

I'm Rachel.

I am married to Mark who has MND, bulbar onset, Mark was diagnosed May 2009.

We are doing ok and have learnt a fair bit of stuff along the way and are still learning so thought we maybe able to share.

Some may know me from BUILD.

****

I just want to add that Mark is one of the "few" that had an elective tracheostomy in May 2010 to manage choking/secretions/mucus and to make ventilation easy.

RACH

MattJ
16th January 2012, 21:13
Hi Rachel,

Welcome! I still lurk around the Build Forum but haven't posted on there for a long time.

Let us know if someone has heard from Jeannie. It has also been a while since she has posted on here.

Rachelg
16th January 2012, 21:16
Thx Matt - will let you know about Jeannie

MattJ
16th January 2012, 21:17
I forgot to add my mum also has the Bulbar type and was diagnosed September 2010.

jadedjohn
16th January 2012, 21:38
Hi rachel. Welcome here where in Somerset re you?

John

Rachelg
16th January 2012, 21:42
Hey John - Yeovil. I thinks we've crossed paths on Build. How you doing? Did you get your wheelchiar from Exeter?

jadedjohn
16th January 2012, 21:46
Hi Rachel yes I think we did, I've not been on there for a bit, I'm ok only walk a few steps, but my extension project is keeping me going., yes wheelchair did come from Exeter!

John

Rachelg
16th January 2012, 21:56
Hope the extension going well John - not too stressful I hope. I joined this forum because on our journey so far, we have learned so much and hoped it might help others - especially those caring for PALS. Our wet room extension made the world of difference to Mark though I found the building of it, hardwork. Dust drove me nuts!!!! Glad you got your wheelchair but enjoy those few steps you can still take, however hard they may seem.

G60dubber
16th January 2012, 22:07
Still catch Jeannie on facebook, quite active on there.

Jeannie
17th January 2012, 08:39
Hi Rach & Mark (((hugs)))

Welcome to the forum ;-)

Thank you for asking about me, about time some did lol only kidding. I hope your good self and Mark are well?

Thanks too, Matt, I hope you and mum are well ;-)

xx

Batty
17th January 2012, 11:16
Hi Rach,
Nice to see you posting on here, BUILD seems to be very quiet lately.
Regards Mark

miranda
17th January 2012, 11:46
Jeannie - tried to send you a pm but you have apparently reached your quota and need to empty your mailbox? It must be all of us asking about you!

Jeannie
17th January 2012, 12:39
Sorry, Chris, all emptied now ;-)

harold
8th May 2016, 23:05
HI Rachel, I would like to PM you but can't see how to.

MY wife has just had a trache for secretion clearance following a mucus plug.

I know your husband did so for the same reason.

I would very much like your advice if possible.

I have read all your posts on the Build Forum and here and found them very illuminating.

So if you see this I'd be very grateful for a response.

Terry
9th May 2016, 00:19
Hi Harald,

PM's are not always possible until you have made five or so posts, then you click on the person 's name and you will be given a few options.

Rachel has not been on this forum for about two years so it is unlikely that she will see it.

Love Terry

harold
9th May 2016, 13:14
Thanks Terry.

I've now been able to PM Rachelg.

As you say, it's long shot, given her absence.

I'm just trying to get what advice I can.

Yours

Harold

Ellie
9th May 2016, 14:09
Hi Harold,

It’s rare here for those with ALS/MND to have a trach & vent, you will find much more info on the U.S. forum, where they’re much more commonplace.

See http://www.alsforums.com/forum/ You should be able to find relevant posts.

Ellie.
PS. I’m not trying to get rid of you!!

harold
16th May 2016, 11:03
Dear Ellie,

,
Thanks for your reply. I'm sure you're not trying to get rid of me!

To clarify, my wife has had a trache for secretion management. She is not on full vent. She breathes independently throughout the day,and goes on the Nippy at night for six hours.

So she is similar to Rachelg's late husband Mark, which is why I thought Rachelg might be an appropriate person to contact.

My particular query was related to NHS Continuing Care and management of trache patients at home. We will get funding but have been told at the meeting that she will either have to have two registered nurses in the house at all times day or night, or will have to go into a care home. And we have also been told (a) that the funding is very likely only to be for the latter option and (b) even if coming home was funded it would be very difficult to get nurses to do the job.

But I know that RAchelg's husband and other people posting on this forum and the Build Forum with trache's, with or without full vent, who are in the UK went home, not into care homes. So I wanted some information about that.

My wife is still in hospital. A few days after the trache she plugged off, but the plug was successfully suctioned. I don't know whether the trache caused the plug or whether this would have happened anyway given the infection she had, but without the trache they would not have been able to get at the mucus. So I guess its swings and roundabouts.

harold

Terry
16th May 2016, 11:29
Hi Harold;

I am pretty sure that at least one another person here that had Trache. Sadly, I don't believe he still posts. I believe that he used it to breath and had one special nurse over night.

It might be worthwhile to ask Mnda connect.

It seems wrong that they have advised have a Trache and are then forcing your wife into a care home. VERY WRONG.

Love Terry

Ellie
16th May 2016, 13:02
Harold,

Yes, I know of a fully ventilated man who had ALS/MND who was cared for at home after an elective trache. He had full time care provided but there is a HUGE difference in not being fully ventilated.

See this thread: http://forum.mndassociation.org/showthread.php?5009-home-after-tracheostomy-fitting

The trach itself, being a foreign body, can increase secretions :(

Taking it from a different angle; given that your wife breathes room air and NIV for night can be delivered via mask, the trach could be removed if mucus was managed effectively with meds, unless she wants to have the option of full ventilation.

Ellie.

harold
16th May 2016, 21:33
Dear terry and Ellie,

Thanks for your replies.

Terry: They didn't exactly recommend a Trache, they argued strenuously against it but we insisted. A main concern they had was that the operation would not be technically possible in my wife's case, because she has had a torticollis from childhood, made worse by weak neck muscles consequent on the MND. But to give them credit, they went the extra mile, found an ENT surgeon willing to do the difficult operation and gave us the choice, emphasing how high risk it it was.
I think they didn't really think about options afterwards at this stage. AT the Continuing Care Meeting I think they were influenced by the fact that my wife had had a mucus plug and by the opinions of the critical care nurses (the meeting was held in the hospital) that she need the same level of care as in HDU. They were I think very concerned for my wife, and scared for her.
I think also they had little or no experience of an MND patient with a trache and didn't know what to do.

We will have to see. If she has to go into a care home, I will move to be as close as possible and spend as much time as possible with her.
But I think I will follow your advice and contact MND Connect.

Ellie: the reason we wanted the trache so much is that research shows that with vent it can increase life expectancy. So having got it we will keep it. What we did not expect was a mucus plug. We knew that secretions initially increase after a trache, but we don't know how significant that was, or whether she was headed that way anyway. She has only recently started to have signicant secretions and this is the first infection since the MND was diagnosed, after a long delay, nine months ago ( we think she must have had it for at least three years looking back).

Both of you, thanks again for your advice.

Harold

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