panguinjen

Just checking in with you. Just got back from a small trip to the hill country but very tired. I tried to relieve Jim from the lifting and extra walking by doing it myself. He gets tired so easlily now. I hope things are well with you and Rog. Take care and know that I was thinking of you. Now back at work and making plans to retire next year.

Thanks for the pm Jen, I'm plotting my escape as I type...it's doing it that's the hard bit.
Hope you guys are keeping okay..
Mair x

Hello Jen,
Thanks for your message, it's much appreciated that Cals and Pals from afar care enough to message me. Clive is fighting everything that could help him, he has HAD to wear his neck brace now cos he couldn't breathe out properly (posture changes). That was scary. Got Resp Clinic on Nov 1st, hoping sort Bipap etc. Got pre-op assessment with consultant radiologist (for RIG) on Nov 7th and if Clive is still a-willing, I guess we get a date after that...but he is wavering and getting weaker.. and stuff is going down the wrong way...it's hard.
Did you find equilibrium yet? I understand what you mean I think, it's getting used to the new norms, yes? What does a compression vest do?
Oh and we got a proper MND clinic to attend now on Nov 12 with a neuro who specialises in MND.
Just my luck we be in the Hosp for my 50th...I wanted to go away..LOL
Hope you guys are having a good week this week.. I'm going to be a Granny (number four)
Mair x

So sorry you had a hard week, Jen. They re-ordered the missing part on Fri and will ring to give us another installation date. It makes me wonder y'know...we need a new front door with no threshold for his pwc, did the ramp...great...brought the new door and guess what..too narrow despite being measured up before ordering..AAARRRGGHH...something all the time.
No BiPap yet. Does Rog use one? What about a cough-assist? Suction? Clive definitely needs some help now I think. I just want to help him be more comfortable but he is so difficult to help with the attitude he has. I admire the way you and Rog travel about a bit, you are strong Jen, to organize things and make it happen. Clive won't go anywhere now, he doesn't want to be seen as he is now..
I hope you have better days this week, sending you hugs from across the pond, Mair x

Sending you a hug Jen. Sorry to see that you've been having a rough week. Go Cardinals!

Hi Jen, it is a worry..I've been escorting Clive for a few months..
I'm ok, just in limbo from day to day waiting for the next bit to cope with.
Clive complained about his breathing today, first time ever, said it hard to breathe out. Got resp clinic 1st Nov, hope he ok til then. Tube won't be for couple more weeks yet, got pow-wow with drs first, see if he sure! He just 8st now, it dropping off him, having big problems swallowing. I hate this...
Hope you are taking care of you too, it's so hard to keep going sometimes.
Love to you both, Mair x

Rog ok Jen? See he had a tumble

Hi Jen,
Team of three coming tomorrow to teach me about care and feeding etc to shorten his stay in hospital.
District nurse coming to try and get blood for pre-op assessment and swabs. Once consultants got his bloods, it could be as quick as couple of days maybe. Hospital stay of two nights as hospice have worked with gp and d.nurses to do so much of it at home for him. I can stay with him too. Fingers crossed, he can go through it. He needs it, got antibiotics for his chest again.
Hugs back at ya!
Mair x

Hi Jen, thanks for the support, it means a lot. How was your trip?
Clive had a heart attack 2010, needed stents. He fought that all the way too so I am in familiar territories on that front. What makes this so much worse is his weakened state and frame of mind this time. He gets infection so easily, I am scared for him. Just hoping this goes as well as it can, and he feels some benefits..
Hope you are both keeping okay.
Mair x

Kim, they (Rog and daughter) are excited!! We despaired, but it's not over til it's over!

Jen

My husband gave up on the Cardinals last night (Friday) then turned the tv back on to see them win. Way to go Cardinals! Bet Roger is excited.

Hello Jen.
That's good news, but do take care.. I'm just realising as hubby gets stiffer, and less mobile, I will have to give in and ask for help.
His weight is dropping off, unable to take much at all..waiting a tube date, he has relented. Assessed for a hospital bed yesterday.
I'm ok, gp gave me happy pills! )
Mair x

Hope all went well today at the dr. Will be (and have been) thinking of you.

I'll be thinking of you...x

HI Jen, well done on completing your ALS walk... we have a firemen calendar on sale here,
topless hunky firemen raising funds for mnda. Got mine lol!
Hoping all is well with you, and your own health (saw you have something coming up on the 9th)
and hoping that Rog is doing okay. What news on his k-stone job?
Love and peace from across the pond, Mair x