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 guys, hope you are all having a good day or is that a silly question??
Rob's not good today, was extremely agitated last night, didn't sleep well, very shaky and tired this morning and had a partial seizure this afternoon, he's now sleeping so got some time to myself. Can't complain though he's been good (or as good as it gets) for the past 3 days just hope this isn't a starter for 6!
Diane I haven't even managed to get him into the "yellow marigolds" yet but I'm sure if he could he would have cleaned your fish tank for you, we used to keep Oscars, big daft fish but quite tame and he did all the housekeeping, I know it's hard work, we eventually had to sell off the whole kit and caboudle as he just couldn't cope. Anyway hope your hubby is doing ok, can't imagine how he is coping with the lose of his sight and also you must make life even more difficult for you both. We live in West lothian, Blackburn, just outside of Livingston (glasgow end). My 2 sons are 33 & 36 with the oldest having a boy (jason) 5yrs and a girl (katie) who is 2yrs our beloved grandkids, they help keep Rob going as he puts on a brave face when they are around. You take care, xx
Lesley Rob attends the Western, was under Dr Peoples (&Shanne McNamara), Prof Whittle done the op. They are amazing people but after the treatment finished it kind of felt like we had been abandoned, all though Shanne is only a phone call/e-mail away, it wasn't the same as going in everyday, but I have to say the MacMillan nurses at the St John's clinic have been absolute stars and Rob goes every week now, they even encouraged him to take up painting watercolors and he's getting quite good. Perhaps your Dad would enjoy something like that, must be better than him watching Corrie and Emerdale?? Hope you get your kitchen sorted out soon and have time to enjoy it. xx
Rona glad to hear you got home safely to NZ. Tiredness seems to be the biggest problem for Rob too, it's gradually got worse over the last few months, was bad during treatment then for 3 months life was good he was even back at work but then it got worse until now he can only walk short distances before he has to rest and spends most of his time sleeping, gets maybe 2 - 3 hrs each day when he is clear headed and able to carry a conversation. Rob's a lot further down the line than your Dad, 12mths up in May (1st landmark) and he is getting a bit better now that they have adjusted the Dex and Keppra. Sounds llike your Dad had same GBM as Rob, right temporal lobe? Hair grows back tell him so he'll still have his good looks. Try not to worry too much (I know it's a stupid thing to say) but there is always someone around to help out & also the alarm that they can get is a great thing, Rob has one and it gives me peace of mind when I have to shop, so get your Dad to ask the District Nurse or MacMillan Nurse & they will organise it. thoughts are with you xx
Carrie & Emma, 2 of the most amazing women I have ever had the priviledge to know. you are both in my thoughts every day and I pray that you both have the strength to get you and your families through this final hurdle. There is light at the end of the tunnel it just takes a bit of time getting to it. Love and big hugs to you both xx
Gayle hope Martin is feeling a bit better and that Martine is not coming down with the same!! and thank you for requesting me as a friend, I was truly touched (I am a bit anyway?). I still can't believe that you managed to get Martin to Spain, we had to cancel our holiday as Rob just hasn't the strength anymore to travel, I think I'll set up a parasol & lounger in the back garden (when the sun comes out) and serve up some Sangria, we can always pretend eh. Keep smiling, love to you all xx
Well guys, the novel has to come to an end, they get longer everyday. To all of you using this site I send love and hugs you are all truly special.
I've taken the afternoon off today as things are quieter than usual at work and I thought Paul might like to have some company. We had to go shopping to get him a new suit as we are going to a wedding on Saturday and his good suit won't go anywhere near him now he has put so much weight on. Now we are back home and as usual he is on the sofa watching TV and hardly speaking a word to me so I've been getting on with a few jobs in the house.
I've made an appointment for him to see the GP next week as I am getting rather worried about his mobility getting worse and on Monday night his speech was a bit slurred although that seems to have improved again now. The GP he usually sees is off this week and the first appointment I could get was Friday next week. I've actually made 2 appointments, one for me aIone and a later one for Paul. I want a private word with the GP so that I can let him know how Paul really is. Paul, of course, will just say that he's fine when the Doc asks him how he feels. The only reason he has agreed to see the Doc at all is that since he is now pretty well off the Dex the psiorasis he always used to have on his elbows has come back and he also now keeps getting dry, scaly patches on his forehead and nose. I'm puzzled as to why he now has the psoriasis worse than before. Just one more thing to worry about, I guess.
Well I'd better get the washing it before the showers start. Bye for now.
Rona, it must be so hard being far away. My hubby’s parents are in the far east and are too elderly to travel over, its really hard for them. Like you said, there is so much uncertainty it is difficult to plan ahead.
Sallye, we have just got a hospital bed, and it dose make the tasks of washing and dressing much easier for ourselves and the carers. It is very comfortable to and makes changing position easier. I don’t think we could have managed without it since my husbands mobility deteriorated. I think one would be recommended if your mum’s mobility became such that she had difficulty moving around the bed herself, or those caring for her needed to do lots of moving for her, or there was a risk of pressure sores – in those circumstances I’d say a hospital bed was essential. My hubby is no longer able to have a shower as he is too tired and unable to balance without support, most domestic bathrooms are not suitable for all the aids that would be needed to safely shower an immobile patient – ours wasn’t – they talked of taking out the bath and putting in a walk in shower that could accommodate a chair but things have gone beyond that now.
Hi Carrie, you have such a lot to cope with, I am full of admiration for how strong you are sounding. Its not selfish at all, there will be time enough later to come back on and catch up with us here. Just post whenever you can – we are all still thinking of you. I agree it must be good to have the reminders of B’s illness removed, your happy memories are so much more important. Sending you lots of love and strength to keep on keeping on. xxxx
Emma, also still thinking of you, you will do Matthew proud. I’m sure the love you shared so deeply will see you through these hard times xxxx
Lesley, hope the kitchen is ready by the time you get back to work. bet you are not looking forward to that!
Hi Eileen, I like the idea of the parasol in sunny Blackburn, get a sand pit and paddling pool and hey presto!
Hi Susan, hope you enjoy the wedding. My hubby still says he is fine when a doctor asks him, or gives his standard answer “I should be alright”! In his current circumstances I don’t know how he can say that, but he does, and of course complains to me the minute they are gone about how ill he feels!
A million thank yous to you all for the lovely messages you have been leaving. it is still not real at all to me - I have been so so busy making calls and sorting out arrangements - it has consumed me for the last few days.
2 amazing ladies Gayle & Julie - wow how the hell you got my address (guessing mates off FB!) but the flowers are beautiful and your words made me cry - we have never met one another but that meant so so much to me I cant thank you both enough - so special what more can i say.
I promise I will keep posting and any questions people have then I will try to help others as matthew would want me to - I am eternally grateful to you on here what an amazing bunch of people you all are.
Matthews funeral is next friday 17th April we are estimating over 400 people so far - a tribute to a tuly special man who touched so many peoples lives.
My heartfelt thanks to you all - they may only seem words typed out as a posting but mean the world to me & I am so glad through my postings you all got to realise the wonderful stong man that he was
Emma, (((((((((bighugs)))))))))))) to you, wish I could do so much more for you after everything you have done for us, you must be hurting so much just now hun, love to you and the girls,may peace be with you all, was speaking to Becky on monday, she is lovely too. Please keep posting hun when you can xxx
Carrie,((((((bighugs)))))), love to you and the family, may peace be with you too, please keep posting when you feel up to it. xxx
Eileen, Blackburn thats not too far away from us we are in Galston, Ayrshire, tho you are much closer too Lesley. xxx
Lesley, love to you and the family have sent you a pm. xxx
Lorraine, good to hear from you tonight. xxx
everyone else sending you all love and hugs.
Spoke to Dot today, for those of you who know her, Rodger and her are doing very well, renewing their marriage vows later this month, and off on holiday too. Martin is feeling much better tonight, hopefully anti-biotics have kicked in now, and Martine is very well too after last nights feeling unwell.
just getting up and took a look and who do I see ?? you poor thing! hope you went to sleep soon after that and had a good night ...Insomnia's a horrible old thing, i know - circular thoughts etc - you're a sensitive lady and probably doing the thinking for everyone in the house... Are you having your milky drink last thing?? Hope you're all ok today - glad that Martin and Martine are better and good to hear about Dot - often wonder what's happening with her and Roger - but remember take care of you as well !!!!! love Joan xxx
- Thinking of you both so much and sending much love - your posts are so moving and mean so much to those of us somewhere behind you on this journey ..
Wishing you all the strength and peace of mind that can be mustered - those lovely men of yours have truly made themselves part of all our memories - thanks for sharing how things are xxxx
love to all you ladies - wishing you and yours a good day today xxxxxxxx
Joan, managed to get to sleep at about 3ish better than the night before's 6am, it spoiled my whole day yesterday, I was so bloody tired. Martin sat up with me last night we listened to the radio and had a long chat about the good old days that was really nice, hope both you and David are well, sending you both a big hug. xxxx
Emma and Carrie sending you both love and a big hug, you are both constantely on my mind. xxx
