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Smudge
31st July 2012, 10:44
John as an appointment with the Neuro Surgeon today to confirm the diagnosis of MND. We already know that he is going to say this because John received a copy of the letter that the Neuro sent to the GP confirming it, but not saying which type. The letter literally had the GP's name & address crossed through & John's name scribbled on. I think that's a pretty poor way of communicating such a huge thing, but as with everything, John has just accepted it & moved on.

So although we sort of know what he's going to say, I am still dreading hearing it. The GP has already contacted the care team & they have started making appoinments with John, the speech therapist is coming next week. He's still waiting for his work to contact him to pension him off & the GP has signed him off work for 6 months & told him that realistically, he won't work again. But my innocent mind tells me that having the diagnosis confirmed means that we can start to move forward and plan the future a bit better as we have something to work from, starting with our wedding and honeymoon in a couple of weeks.

I've had long chats with John to explain the things that I have found out both on the forum & main site & he has said that he would like to go to local meetings if there are any nearby to meet other people, so if any of you are in the Hants/Dorset area then you may be getting a couple of new members soon.

Wendy

Mich
31st July 2012, 19:55
Wendy, I hope you are doing okay with your husband's diagnosis today. Receiving a copy of the letter as you did is an awful way to find out that he had the disease. Did you manage to find out which type your husband has?

My dad was diagnosed two years ago, he has ALS.

Terry
31st July 2012, 20:32
Hi Wendy;
Sorry that you have heard, and in that way but as you say you can move forward. It is though, good to hear that John wants to meet other people with Mnd. I think that is an excellent thing to do. Obviously you probably have heard of Mnda branch meetings in the Counties around you. Other places that you might meet people are the Hospice, Hospital and other places where disabled people go. Also we meet other people by going to Mnda charity events or collecting money at supermarkets Our local hospice has run a get together for people affected by Mnd and it is possible that the hospital would do the same. You might find someone near you by asking around and by asking here.
Best wishes Terry

Smudge
31st July 2012, 21:49
Thanks guys, he has ALS, which in a wierd way is a relief because I had convinced myself that he had a different type & although having ALS can never be considered great, at least there are extra support groups etc which will help.

The Neuro was great, he explained everything really well, he also runs an MND clinic with a specialist & their next one is in October, so he has asked us both to go. He has also contacted the Pallative Care Team (in addition to the GP) & is arranging for John to get a splint for his right hand in the next couple of weeks. He's started on Rizuole (I haven't learnt how to spell it properly - yet) today & is also booked in to see a physio. I explained that I had already got him doing some passive motion exercises that I found out about on here (thanks Jeannie) & he said he was really impressed with the research & work we had already done since our first meeting & that John is approaching it with a good attitude.
So all in all, not the best day of our lives, but it could have been worse, and no doubt will be in the future.

So now to look forward to the wedding & honeymoon in two weeks time, then to tackle it all head on as we need to. If I have learnt one thing from the people on here, it's that life with MND is a different one to what we hoped for, but it doesn't mean it has to be a sad one.

roy
31st July 2012, 22:11
Hi Wendy and John,
Just wanted to wish you every happiness for your wedding.

Roy

magic
1st August 2012, 04:40
Just want to wish you both all the best with the wedding and honeymoon. You sound very grounded and proactive and that is such a strength.

Magic

pete
1st August 2012, 09:15
Hi Wendy & John,

Just wanted to add our best wishes to you both for up coming wedding , hope all goes well and keep up the positive actions , there isnt any other way , all the very best to you both.

Pete & Lynne

Smudge
1st August 2012, 16:38
Thanks everyone!

To be honest, when MND was first mentioned a few months ago, I completely fell apart, but it's kind of what I had to do so that I could get it out of the way & be srong for John. He has been totally amazing and strong throughout, but I know that it's going to start getting more difficult for him & I am determined to be there for him through it all.

You lot have really helped us without even knowing it because I read about your experiences & how open & honest you are about some of the most personal & private things & I feel very lucky to have found you all at the beginning of our journey because knowing that you are not alone is such a comfort.

Onwards & upwards all the way.

Gloria
2nd August 2012, 13:10
Hi Wendy and John

Best wishes for your wedding it will be a wonderful time for you both.

Gloria and Dave

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