Hi, we are ok, still in Bolton, settling in the bungalow. Laurence hasn't been back to hospital - where does it say so? We are going for a check up for niv soon. Take care, D
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Hi, he is still adjusting, but has not been sick since that episode. Did you do the oxymetry? Glad no FTD symptoms. Dani
Mick and Ang,
Thanks a ton for the birthday message! I passed along the wishes to my PALS Jim (when I set up our forum info I thought I was suppose to list his birthdate--oops!). My birthday is Oct. 16, 1962 so I changed that on my profile. How are you? Spring is almost here!! Big Hugs, Marie
Hi. How did the clinic go? D
Cheers. Glad you saw the programme. We had a lot of interest today from various TV channels, press, both national and international, but all that is time consuming and Laurence is saying 'no' to most of further publicity. We did our bit, I think, with Inisde Out. There was an article in Sunday Times yesterday, Telegraph, Mail, Mirror...and also BBC breakfast and BBC News channel featured the story.
X Dani
Hi,
so sorry to hear about Mick's horrible experience in Bolton Hospital. I gave birth to Stanley there, it was OK, but then that took only 2 hours and I was out of there the following day. It sounds to me that he is putting off the inevitable, which is understandable as it is scary to accept one is deteriorating. I don't know about involuntary breaths, but that does not sound right. Definitely something to address. Have they ever measured levels of O2 or CO2 in Hope? (I think they do this once the FVC is lower or a patient has breathing issues). Those tests reveal a lot, CO2 build up can results in headaches, sleepiness, lack of concentration etc. It can creep up on one, and kill. Bipap help flush it out of the system. Has Mick got bulbar issues? They say it is harder for bulbar patients to use/adjust/benefit from bipap. Hope he holds out till your next appt, and that he gets appropriate attention. D
HOw is Mick? Laurence maybe coming home today with Bipap. I had a tough weekend, going back and forth to Wythenshawe with Stan. Emotionally draining too. Being alone with the baby, imagining what life would be like without Laurence...pretty awful.
Hope you can convince him to have his breathing checked, gasping for air is not fun. Broken sleep, headaches, lack of energy, poor concentration etc. are all subtle signs of respiratory insufficiency. I understand him though, not wanting to know...it's a big shift once the breathing becomes involved. D
Hi there,
yes L is better (chest issue) but FVC going down so referred to a respiratory clinic. X Dani
Ang, I'm not sorry at all that I stopped by, but I'm not the best person to ask about EL. Upper Neuron stuff is what I hardly have at all, and I say that in gratitude. Katie C is an expert on EL, and CJ is bombarded with it. I know others also suffer either as the CALS or the PALS. My insane laughter is just my normal state of silly nincompoopery. Ang, you have your hands full. Come to think of it, do a search on dementia here in the search up in the blue bar. It's FTD. I did just read that lack of empathy is an early sign of FTD (Frontaltemporal Dementia). Gosh, I hate to tell you that. The thread that CJ started is where the lack of empathy was mentioned, I believe. Check the CALS forum for that, first. Yikes, Ang, now you'll be sorry you asked me.
Big hug,
Ann xo
Just stopped by to say Hi, Mick and Ang. Hope you're both doing well... and no "cat sneezes"! It does sound pretty funny, though.
Ann xothans for the nod mick and ange..am good..and sure hope micks doing good to...and you ange..carers get the toughest end of the stick at times...old Nat Lofthouse has gone..left some great memories didnt he? how you managed in that cold hole bolton this winter a dont know...its warmer down here but blimey i still felt every draft..spings on its way..stay strong...loves johnny
Hi,
sorry to hear that (about the fall). We too are struggling to get out but we have both been going to work/driving, plus taking Stanley to the nursery. I wish they would clear the roads! Manchester city centre is not bad, pavements are clear, but everywhere else is a real pain.
I know what you mean about being isolated, with the holidays looming over us all services seem to pack up. We are in the process of getting a care package, but it has taken a long time and now holidays.
Take care, D.
hi,hope you enjoy the festive holidays.
dont eat and drink too much...........well, just a little lol.
take good care (((hugs))) caroline -
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