Hi to all, is anyone else dealing with the same sort of things as my family.My parterner has had ms for just over 3years but in that time things have gone down hill rapidly.although the physical simptons are really bad the real thing that me and my children are finding hard is how quickly my wife has lost most of her ability to hold a conversation, and how quickly she has become stuck in a memory bubble of 15minutes and obsessed with everything on and around her being safe. We all miss the real her but are of coarse happy that she is still able to have a laugh with me and is still very smiley. It realy hard to express how hard its been, but please dont get me wrong i am not looking for sympathy just,may be hearing someone who has had similar expireancs and understand how we feel
hi hardwaller
itâs me that has cognitive problems in our house.
it used to annoy my family but now they just have a laugh with me about it.
what really bothers me is that mid sentence i forget a key word and just stop talking.
the person iâm in the conversation with says to not worry but it drives me mad!
even worse after iâve been in bed for 10 minutes the missing word pops back into my head.
grrrrrr!
carole x
Thankyou CatwomenCarole, if you dont mind, how long have you been diagnosed. Did the cognitive problems happen after a relapes.With my wife she changed dramatically after a bad relapse. She has never been the same since although i regularly see the old her shineing through. We do all try and make light of the situation. After all me and my wife have always believed in finding the funny side of life.Although i think my daughter finds it hardest to deal with, the other day she said âshe has not really got a mum anymoreâ.i did find this upsetting but she has a bunt way with words sometimes.expecially when she has her teenage face on if you know what i mean.Although we all find it hard (including and most of all my dear wife)my daughter and her brother have been amazing though out. It surprised me how grown up they have both become.i think most my strengh comes from seeing my wife smile and knowing my children are happy, as iam sure its the same for most familys.
hi again
sorry itâs taken so long to reply.
i was diagnosed in 2008.
my cognitive problems have been around for a few years but they are slowly getting worse.
my 2 sons are 28 and 30 yrs old and still live at home.
my youngest makes me smile a lot, bless him.
your doing well, carry on with the smiles.
carole x
I like cat woman can be mid sentence and I canât for the life of me think of the next word this is even worse as I work on the check out of a major hardware store and it happens with customers, also my short term memory is shot the wife gets fed up of me asking the same old questions. At the moment itâs not that big an issue to me but it does worry me how bad it may get.
sometimes i lift my hands out as if asking for patience, smile and then try again.
i think we should all learn sign language, people with ms and people without it.
however my poor old brain really isnât up for more learning.
now what was i talking about???
i was listening to an album by radiohead and a line said âi have no idea what i am talking aboutâ thatâs me!
carole x
the song is âbodysnatchersâ
"i have no idea what i am talking about
iâm trapped in this body and canât get out."
Hi Hardwaller,
Like you I am in a similar situation. My partner was diagnosed 6 years ago, last 2 years her cognitive abilities have decreased significantly to the point where a conversation that lasts more than 3 mins ultimately ends up in a loop of repetition, struggles with words, and for the last 6 months has had issues with her eyes to the point where she can no longer read and struggles to make out peopleâs face in photographs.
Like your wife, my partner doesnât let it bother her (within the family unit/home), according to the Neuro sufferers donât actually realise they have a problem. She does accept that she has a small problem with her memory god bless her. She does find going out quite hard as sheâs afraid people will find her âstupidâ which is very heartbreaking as she used to be fiercely independent. But we muddle by still trying to have a fulfilling life, we also have children (19/14/9) although oldest is off on his own.
I wonder out of interest was your partner ever on Gilenya?
Hi Hardwaller. I donât know how common these symptoms really are but Iâm in a similar situation to you. My partner has had MS for 5 years and for the last 3 years has suffered with the cognitive symptoms that are described on here. For me, these are the most difficult symptoms to deal with. You feel like youâve lost the person and grieve for your loss even though the person is still there, itâs very difficult to describe but iâm sure you know what i mean.
Like coping with any of the symptoms, things do get better as you get used to the changes but it isnât easy. I agree that not enough importance is put on these issues by medical professionals, they seem to assess MS on all the physical symptoms presented.
Try and stay positive, there are people who are in similar situations, there just doesnât seem to be that many!
Folks like to be in control of their own life & it causes all kinds of emotions when things go get out of sync.
A half ball for balance exercise is a good idea. Finding a way to boost some confidence & a gradual way of accepting things can help to start the acceptance process.
Caring issues havenât been a problem as yet for me. That scares the crap out of me personally.
Having MS that disables, needs understanding people around.
And the people who care, need a break too. Especially if itâs loved ones.
What goes on in the mind of someone with MS is confusing. Yet some people try to understand. I thinkâŚ
Get yourselves on a holiday & make some fond memories. It strengthens electrical signals to what actually counts.
Best regards
Terry
Hi Hardwaller,
Major health changes are hard and scary. I really liked Terryâs response. Being in control of our lives is something we all like, and with MS and the different reactions of those around us coping with our MS, emotions can go to extremes. Terryâs idea of taking a holiday sounds wonderful. Unfortunately, those of us with MS also experience a lot of financial stress (especially here in the USA), so finding the money to take a holiday is difficult at best. I find even short day trips to someplace new and pleasant helps. Hope things improve soon. It does take time.
Janet
Hello, thanks for all you responses.It really does help to know that people can understand what we are going through. What Anonymous mentioned about her husband call her evertime she leaves the room is just like what we are experiencing. Its an incredibly difficult thing for me and my kids to deal with. i have been luck enough to have a weekend away with the children while carers looked after my parterner and it did help a lot. Many thank to everyone.
Hello, thanks for all you responses.It really does help to know that people can understand what we are going through. What Anonymous mentioned about her husband call her evertime she leaves the room is just like what we are experiencing. Its an incredibly difficult thing for me and my kids to deal with. i have been luck enough to have a weekend away with the children while carers looked after my parterner and it did help a lot. Many thank to everyone.