Hi to all you carers out there, so pleased to have found this forum and found so many posts and supporters for many of the issues that I had experienced…I wish I had known about it then as it can be a long and lonely battle at times to get your voice and opinions taken seriously. Personally I believe that carers know far more at times and are far better placed to know when something is just not right.
Just for background I met my partner in 2004, he had MS dx in 2000 although tracked back to 93. He had worked, travelled and lectured worldwide for many years post dx but then had some bad relapses that left him unable to work with severe memory and cognitive problems and now confirmed secondary progressive. We married in 2010. Will hope to get to know some of you better and share hugs and sobs as we try to make sense of the impossible!
You sound like an amazing supportive loving lady. If you have any questions or just want to vent here is he place. He is very lucky to have you. Take care. X
Thanks Poll and Anita, glad to meet you both …and will hope to get to know you all better and share your stories…nice Poll to hear you have 3 lady helpers too…I am looking into Crossroads Carers (now Princess Trust) for some occassional respite care but meanwhile I have booked a wonderful friend (ex neighbour) who will come and stay for 2 days so I can go and see my daughter for a few days which will be lovely.
Take care, and Im always happy to have a natter with anyone! x Kate
Welcome to the site. I’m glad you found the site as like you say, it can be a lonely battle so it’s always good to find supporters and who better than to chat to than carers and MSers.
I’m not a carer, I have MS and I suppose my partner is a carer although I’m doing ok at the moment.
I hope all is well in your household and if you have any questions or just want to gibber I’m always happy to.
Thanks Makky…Im pleased to hear you are doing ok and will hope to get to know many of you carers and carees and share our good days and help each other through the bad ones
Hi Kate - I am not exactly a carer but more a partner of someone who has been diagnosed. As I am new to this whole world I don’t have much to offer in practical advice but I would so love to hear from other partners. I did post on the ‘newly diagnosed’ forum but didn’t get any replies so thought I’d try over here. The following is what I posted:
My husband has just been diagnosed with RRMS (or small possibility of PPMS) at the age of 57 - so I know that is late onset. He is about to start on DMT - interferon I think. The problem is that he is terrified and his way of dealing with this is that he doesn’t want to know anything about the condition beyond what the neurolgist says. I have been checking things on the internet on his behalf and passing on stuff I think he can deal with. The neurogist has (I think) picked up on this and is I fear giving us an overly optimistic prognosis. He says that DMTs have changed everything, that it is entirely reasonable to assume my husband will live a pretty normal life, that he may never have another exacerbation etc etc. I just don’t know whether I believe him or not. I am the kind of person who wants to know the truth - however bleak - and I can’t bear this uncertainty. I have read that late onset is generally worse and MS in males also worse. I really don’t know where to turn. I can’t be frank with the neurologist as I am always there with my husband. I feel very isolated with this. Sorry to burden anyone but I would so appreciate some thoughts on this. Best wishes to you all, Caro
As I said, I don’t have anything practical to offer at this stage - but would genuinely love to hook up with others and to share support and thoughts. Have any of you experienced a partner’s wish to not know what might happen? Is this common? Best wishes, Caro
I think that you may have hit the nail on the head about carers knowledge - in terms of our quantitative assessments. We have an accumulated knowledge of things, quirks and facts that give us an insight into things. Between us we have a repository of knowledge that can help in a number of areas of practicality.
When you have a specific issue that is troubling you I would hope that we can offer some insights into ways forwards that will be of use.
Hallo Caro…glad you have found your way over here as I hadnt spotted your previous post…Im sure you will find lots of emotional support here. Sounds as if your husband is in denial at the moment and it might take him a while to come to terms with it particularly at this later stage of his life. As I am sure many others will tell you , MS is unpredictable and symptoms and course vary greatly from person to person. As you have found there is a wealth of info on the web, some good, some bad.
Personally I have found that taking one day at a time and dealing with things as they happen is preferable to worrying about what might happen, however I too did do a great deal of research on the web just to be as well informed as I could be…like your husband, mine has never wanted to know what could happen. I will be more than happy to be a friend, please do ask about anything that is worrying you
Hi Kate - thanks for your post. Actually, since I last wrote, my husband has decided we can tell people which is for me a relief. So we don’t have to be secretive about drs’ appointments anymore. I guess I am finding the range of possibilities quite over-whelming - that it could turn out to be relatively mild or its opposite. But, in time, maybe that uncertainty becomes normal? Best wishes, Caro
And there are a few of us ex-carers here too! Been there, done most things! And with 2 primary age kids in tow!
My husband was in complete denial about his illness for a long time - he had a “probable” diagnosis late 2003, and it took him over 2 years to face up to that and go for his lumbar puncture for a “definite”. He then went the opposite and would spend days trawling the internet for information, treatments etc… the only thing he had no time for was face to face support groups/internet support groups (perhaps he thought if he wasn’t sociallising with MS folks, he didn’t really have it!)
its a strange thing really, i have MS do not have anyone caring for me but i am a carer for my huband who has COPD
why is it that although i have only been diagnosed at 50years of age 18 months ago and have a few bad symptoms of ms i cant get anyone to help me . is it because i am a carer myself even though i am struggling???
i know by some strange illnesses i have had in the past at least 16 years that no one could put a name to i have defo had MS a long time
its a strange thing really, i have MS do not have anyone caring for me but i am a carer for my huband who has COPD
why is it that although i have only been diagnosed at 50years of age 18 months ago and have a few bad symptoms of ms i cant get anyone to help me . is it because i am a carer myself even though i am struggling???
i know by some strange illnesses i have had in the past at least 16 years that no one could put a name to i have defo had MS a long time
but i am a carer for my huband who has COPD