Denise was last seen in the Plymouth area. If you see her let her know we love and miss her. π€πππxx
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Hi guys
OK here I am.Sorry I'm sort of getting myself organised. Lots of telephone calls, meeting people and really trying to figure things out. So many people after having nothing at all. Even online supermarket shopping is strange to me.
Telephone stuff, banking 11 years away and it's all rather odd. I'm also trying to get myself a car. not easy when you haven't got a car.
Being told you need to move again and not wanting to.
I kept thinking I'd come back on here but I've honestly been so busy and so many more things added to what I already do.
I will come back I do think about you all and miss you.
Hospital today in Devonport. Not sure what time hospital transport will turn up. But the sun is out and things look better already. Young seagull watches me. I give him food my cats have finished with. I've called him joey. Xxxxx
Love and hugs to all of you. ππ₯°ππwhen i can think of something profound i will update this.
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Hi Denise, good to hear from you. Lots to do eh and good luck with all of that. I hope that your hospital trip goes well today despite waiting around for hospital transport. Love Lynne xALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
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So lovely to hear from you DeniseI've been thinking about you both and wondering how you are. We've missed you. π₯°π€π€
You have such alot to sort out so best of luck and I hope you can take it relatively slowly. I also hope it goes well at the hospital today.
Thanks Matthew for starting the thread and to Phil for the reassurance π
Take care Denise,
Love and hugs
Debbie x
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denise Thanks for popping by, my lovely. We'll have tea, a crate of chocolate digestives and a box of tissues (on standby) for you whenever you're ready. π€π€π€π€ πβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Lovely to hear from you Denise, I have been wondering how you are. With relocating in another country and suddenly getting all the uk help I can quite imagine to be so much to deal with. All the best with it all xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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They cancelled the hospital appointment. Rushing round got him washed and dressed. Just waiting for transport. Then the phone call. Looks like an administrative error we had no need to go his chest is fine there's absolutely no need for an appointment. I went from oh **** to ok fine its a lovely day why spend it at the hospital.
Then a call from gastroenterology (I think that's who?)
Can we speak to Stephen.
No he doesn't talk on the phone but you can speak to me.
Why won't he come to the phone?
trouble speaking and communicating, trouble hearing
Well we'll have to book a face to face
No we won't if you can't talk to me on the phone we're not travelling all the way to the hospital just to have a conversation that could be carried out on the phone.
Well you will need to go back to your GP's surgery for referral
he wasn't referred from GP's surgery but from one of the dieticians because his peg needs replacing and it should be done just a day trip to the hospital.
I left it at that but got intouch with support staff and asked them to intervene. They go on about wasted hospital appointments and wasted use of hospital transport.
my daughter phoned with an offer of dinner and a sit in the garden. I was so tired out and annoyed I fell asleep. πwhen i can think of something profound i will update this.
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Originally posted by denise View PostThis is why I haven't been about. The strain of it all.
βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
β
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