My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
hi all Julie, I 'm so sorry to hear of Stephen's passing. Nothing can take away the precious memories of your time together.
Dot, lovley to hear from you, many of us I'm sure often think of you and Roger and your inspiring journeys! i'm sorry to hear about Roger's decline. I know you'll continue to make the absolute most of the time you have. congratulations on your new grandson.
to IdreamofFiji, welcome to the thread. sorry you have found the need to be here, but do stick with us and Like many you'll find support, understanding and friendship. Its quite quiet jsut now, not many people on, and we are feeling sad because some of our number have recently lost loved ones, but if you stick with us and keep on posting it will help - I found it just helped sometimes to put things into words, there isn't always an answer to every question, but if there is someone here will be sure to know it!
Julie - I am so so sorry to hear of your lovely Stephen's passing, his suffering is all over now, wish you so much srength to get thru the coming weeks.
Lesley - Big hugs to you at this time.
Dot - Really nice to hear from you, I am sorry to hear of a decline in Roger.
Diane - Always lovely to read your posts, hope your bearing up as well as can be.
Becca - Not sure if your reading hun, hope you got a bridesmaid dress, we will meet one day I am sure.
Well folks I had a nice time away with my hiubby, he did not win at the bowls but I was very proud of him and especially when he won his first game I felt I could feel Mum with us cheering him on, it was hard as it was our 8th wedding anniversary and the first special date in the year for us since we lost her and with no card it felt so sad, she was always the first to give us a card as our wedding meant so so much to her.
Our trip to the Ayrshire coast was made extra special as Scott and I met the originator of this thread Gayle and her lovely husband Martin and their daughter Martine on Thursday afternoon, we joined them in their caravan home for a few hrs - Thanks Gayle it was lovely to meet you after chatting to you on mac fb etc and being able to sit and chat to you face to face was just so nice, we both hope to see you again soon, please say a big hello to Martin from his new friend Scott! xx
Dottee, DaisyCat, Lors, Ying & Yang: Awww...........so lovely to get your heart-lifting replies! So good to be in touch again.............despite the circumstances.
Camdoc finally sent doctor out 3 hours after my call this evening (someone pressed the wrong button on the control board, i.e. the button ordering a house call was not pressed cos due to a 'slip of the finger' the one for 'patient coming in to clinic' got transmitted. Good job I phoned back when I did as Roger was getting quite agitated that I wouldn't let him go to sleep whilst I was waiting for the doc to come. Anyway, glucose up at 10 which is high but not enough to get him into hospital, thank goodness. Roger's Dex being lowered back down to 8mg over next 3 or 4 days so, hopefully, things will stabilise then.
Can someone tell me the answer to my question: "why does it happen that Roger never gets one event happening at a time................we usually get at least THREE big EVENTS within 3 or 4 days..........often after periods of weeks or months with relative calm???!!!
I'm kn**kered tonight and hope that my weary soul will let me have some proper rest - haven't slept well since Roger had his first 'confusion'.
Can't answer your question - but I thought it was 'normal' for things to happen in threes??? It always seems so in my life!!!!! And always the bad stuff...............never 3 lottery wins in a row!!!!!
Hi Dot-Just a thought maybe you could get yourself a blood glucose monitor(they are quite cheap) and easy to use. Then you could test Roger's blood when you felt the need and put your mind at rest without waiting for a doctor. When my hubby came out of hospital his blood measure was 31 but we were able to get back down with his insulin. The monitor may help while Roger is on high Dex. x
Julie I am so so sorry to read your news. Thinking of you and sending huge hugs. Cannot imagine what you are going through but glad you were with him at the end.
Dot hope you & Roger ok.
Lorraine that's great that you met up with Gayle. Must be nice to finally meet. (Gayle hope you & Martin are having a nice time at the caravan)
I dream of fiji welcome to the thread but sorry you had to find us. This can be a great place to come for support or advice so hope you will find it helpful too. As someone else said just being able to put your thoughts in words can be helpful too.
All ok here. My Dad hadn't been eating for a while but his appetite seems to have returned. We recently helped him to buy a tv as he was getting pretty bored stuck inside on his own so hope it gives him something to do when he doesn't have visitors.
Dianne I have just watched the programme, firstly what a very pretty girl Hannah is, she is just lovely.
I really hope it makes people more aware and I will certainly be sending a donation to help get more research into this horrible illness. You all came across perfectly and it made me cry especially the bit at the end. Love to you all and give her a big hug from me xxxxx
Ying Yang: thanks for advice re monitor - I already have one, thanks, BUT I'm ashamed to tell you that, even in Roger's confused state, he has the 'hang' of it still, better than I do!! He's 'educated' me in one of his 'wakeful' moments today on 'Dummy's Guide to Blood Testing for Glucose' and I think I can now, proficiently, at least open the box!!! LOL. Seriously, though, the glucose level has dropped (and I even checked the blood monitor reading was not 'cranky' by doing a urine 'dip stick'). I'm sure with the lowering of the Dex things will be stable again. Thank youoooo.xx
Dottee: How lovely to have met another 'Dot'. Thank you so much for staying in touch. xx
Green Tea: Thanks for lovely wishes. I am thinking of you also.
Today we've had a visit from our dear neighbour, Laino, and Roger's daughter. Everyone on the 'same page' I think about the good year we've had. None of us are particularly optimistic - not helped by Roger's confusion and exhaustion but................you just never know, do you??
Diane, Me and my mum just watched the programme on BBC1....what a caring, intelligent girl Hannah is....and gorgeous to boot! As Julie says, you all came over so well (nice to put your face to your name now)..hopefully this is the start of well-needed awareness towards a cure. I bought christmas cards from the SDBTT and will continue to do so, well forever..every small bit counts doesnt it. Long may Hannah continue to do well. x
Julie, hope your bearing up as well as can be and are surrounded by people who can help look after you now. x
Dot - I remember you from a while back and was amazed at yours and roger's camping aspirations...was just brilliant. Sorry to hear he is not so good just now, hope its just another "blip" and he comes through yet again. x
Gayle - Hope your all enjoying the caravan - how fantastic you and lorraine got to meet...hope i can be there sometime in the future!
Sorry to all the new people who find themselves here....if there's any place to help you along this journey, beleive me, this is the place to be. I unfortunatley am now on a different journey but I have made some great friends on here, and the people are the most kind, caring and genuine people around. It seriously is one of the main things that helped me through this last year. x
Well my dad's funeral went so well on Friday...the sun came out and shone for his last journey. We couldnt have asked for a better send off. I think I was on complete autopilot and actually held it together better than I have done on any given day over the last 11 months. We raised £950 for St Columba's Hospice, the place where he spent his last 12 days, looked after by people i can only describe as "angels". I have woke up today with an immense sadness that I'll never see my dad again and the reality hit home a bit more. The only small comfort I have is that he isnt waking up to face another day in the shape both mentally and physically, that he was in for the last few months. I think the void that he is not here will alway be with us though, no matter what we do.
I would like to thank Gayle for starting this fantastic thread....cheers my friend. I will obviously not be on here as often after this but I will always pop on to see how everyone is doing - Im also on facebook as some of you know and will always keep in contact that way...I have made some really good friends on here that I havent even met! I just know that we met through this unwanted journey and shared a common bond that I doubt will ever go.
Wishing you all (Gayle, Joan, Diane, Becca, Eileen, Rona, Lorraine, Sue, Dot, Julie, christie, Diane, Debbie, Ca) and so many other people that I cant remember all the names right now, but to each and every one, thanks for being there all this time with advice and friendship and to those fighting on, never ever give up, there has to be a cure out there and I hope you all find it real soon.
I was so sorry to learn about the loss of your dear Dad. What an amazing man...........and how lucky that you were his daughter. My heart and thoughts with you, brave girl. xxxx
