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Pupkin55

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    #16
    Hi Pupkin,
    Great news about the hospital appointment!!
    I too have a important appointment on Tuesday with consultant etc to see what else is going on with me?? Also, get to meet a Doctor of MND too.
    Just another thought,maybe see about getting an automatic car, so you stay mobile...
    Keep us informed!!!
    Take care
    Chebsx

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      #17
      Hi anyone,
      I'm feeling so alone, husband great and family, but went to my meeting expecting results of all the tests, instead was broken, crying and very upset...feel like a fraud...
      Having firstly told by one neurology consuItant I have Dementia(FTLD) then told by another not sure it's that type. Also, was told likely PLS form of MND,Now told possible MND, maybe something else!! 4 years!!! I can't take much more, I know it could be better outcome though the pains,crasps, stiffness,balance,drooling and fatigue, then on top short term memory.
      I went to a coffee morning today, didnt want to go, but was quite informative, they have advised me to go for a second opinion??
      Sorry, but all I hear is Cancer!!! what about us!! MND (maybe suffers)
      I'm fed up of keep telling my medical history, feel like I should carry a plaquard with details round my neck ( not practical at mo, too painful) Oh well, maybe this rant will help, but tired and numb from it all today, just want to stay home and let the world go by.
      Regards from
      " A deflated Chebs" x

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        #18
        Hi pumpkin
        I hope and pray that you have this horrible disease and you need to go through all the test, get the results first then you will know what you are dealing with and can act accordingly, I have my fingers crossed and will pray that the results come back as something simple like trapped nerves, but with the symptoms you describe it could be anything. Get the results and then hopefully that will free your mind of worry
        Thinking about you
        Tim

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          #19
          Hi Chebs;

          Tiredness and bad news days do make us deflated.

          Since christmas my Mnd seams to have progressed quite a lot probably due to two bad coughs and a virus, plus two quite bad backs for a week each.

          Still I have been getting my spirits up until about a week ago my tooth had a great pain and a few days after that I had my toe nail cutting into my toe. Still went to dentist yesterday and he cured the problem, well until half way through my dinner that night.

          Been to doctors this morning and he gave us some cream and has forwarded my towards two different specialists.

          So a bad year so far, still we have to live and keep going with a smile, I guess.

          I know I'm not anywhere as low as you Chebs.

          Hugs Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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            #20
            Hi Chebs,
            You have your rants, believe me I've had a few since the wife was diagnosed with mind In october of last year , as I'm sure everybody on here at one time or another has, to be told you have any form of mind is a hard knock to take, it's a cruel, horrible disease, and there are people on her who will listen and try to help if they can, me included even though I'm really still learning myself, you get to much information to process it all, this site helps there too.
            Have all the rants you want, it sort of relieves a little of the release of the mixture of emotions you are going through and hubby is probably suffering as much as you are at the moment.
            Take care and visit here when you need a rant or advise always someone who can help
            Tim

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              #21
              Hi Terry,
              Oh toothache, not nice.. hopefully your sorted now and carry on enjoying your dinners.
              Its nice to have this forum to rant and to know we can support each other. I know this is a long process just hard to keep repeating myself especially when I have trouble with my speech, then when I leave appointment I remember something else thats been happening.
              Anyway, nice to talk again
              Chebs xx

              Comment


                #22
                Hi Tim,
                so sorry to hear it's your wife that is suffering. As you say my husband is trying to deal with me and also his emotions. This is not easy but at least we have each other and we can support each other..
                It was about the same time as yourselves that we were told I had Dementia, and told to do my bucket list!! Then early this year possible form of MND as well... still ongoing prods and pokes, it is draining...
                Anyway, thank you for answering my blog and hopefully we can support each other
                Regards to you both
                Chebs x

                Comment


                  #23
                  Hi Chebs;

                  I always list or write the things that I want to ask people, it takes the pressure off of talking etc. One thing is, if you give a A4 sheet to most people to read, they scan it and don't answer most of your important points, so I fold the sheet up and stick to one point before I let them see the next or print several sheets with separate points on them.

                  It would be probably good for you to take a recording device in with you to record everything. You will have to say to them why etc.

                  Love Terry

                  PS:- Dentist appointment 21st May unless I can't eat or it is painful
                  TB once said that "The forum is still the best source for friendship and information."

                  It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                  Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                  Comment


                    #24
                    Hi Chebs,
                    Having each other, especially now is so important, are you suffering from emotional liability too ?, Only ask because the wife suffered badly, crying at the least little thing and was given citalopalm which has worked wonders for her .
                    I hated doing Mary's bucket list, it seemed to make everything become real instead of just a bad nightmare that you wake up from, for me personally it was when she said she didn't want to be resuscitated that this nightmare of a disease really hit home . Have you had a peg or rig fitted yet ? Whenever I'm here will always listen or chat and try to help as much as I can. Be strong and do all you can together while you are still able to function
                    Best wishes and support
                    Tim

                    Comment


                      #25
                      Hi Terry
                      You certainly are going through a bad time , but we know this disease is no picnic ! One thing after another it is relentless and I am only about a year into it .
                      You seem to have a great attitude and are very positive outlook, and help everyone on this forum .
                      I wish you all the best and hope the latest things soon get resolved.
                      Keep smiling and take care
                      Love Chris

                      Comment


                        #26
                        Thanks Chris;

                        There are so many things that Mnd affects, most directly but some indirectly.

                        I could not control the speed and pressure of my bit reaction and sometimes they would just snap shut and damage the teeth.

                        I have been sliding my feet along for years and I can't stop my right foot angling out and the big toe sticks down a little. All this and the fact that I tend to bear a lot of pressure on it when balancing and that I've lost the toes size etc means that problems are likely.

                        Just two of many things that I have that would seem unrelated.

                        Still toe feels better but I have not used it, shoes soon and then gym. Fingers crossed, well that's another thing with hand cramps, my fingers would rearrange themselves into shapes that normal people could never do.

                        Love Terry
                        TB once said that "The forum is still the best source for friendship and information."

                        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                        Comment


                          #27
                          Hi Terry,
                          I think I might try your idea... as I do seem to suffer with short term memory...
                          Sorry to hear about your teething problems, I hate dentists!! so I will be thinking of you on the 21st though I must admit to some tooth ache myself..husband gave me some chocolate and I had some pain in back molar!!! (his fault) not rushing to the dentist yet!!!!!!
                          Well take care and talk soon, at the moment just having contact with people here as feeling delicate at moment..
                          Regards Chebs xx

                          Comment


                            #28
                            Hi Tim and Mary,
                            I think I'm suffering with my emotions at the moment, look in the mirror and don't know that person staring back, I seem older and fatter, husband Alan says I'm still beautiful and the same woman he married.
                            I know at the moment its all "up in the air" with more dignosis, so Ive decided to take a day at a time, Yesterdays gone and tomorrow's promised to no one, so live for today....
                            I too mentioned resuscitation to my doctor in front of Alan, he felt the same, realisation of this disease. I had my neurology nurse mention peg feeds?? which she said, we could talk about in a few months I must admit it came as a shock to me.
                            apparently better to do when your well, than waiting for problem with swallowing..
                            Give Mary my love and tell her to stay positive, sometimes being the patient can be very difficult, I know I hate asking!! for help, been independant up till now
                            Like you Tim, always here for rant, chat or to listen
                            Take care of each other
                            Chebs xx

                            Comment


                              #29
                              Hi , just been reading your posts, I'm so sorry you feel so low , I think you are a very brave lady and you have taken the time to message me even when you have got so much to deal with yourself, I didn't get any answers at my appointment I haven't replied as just having a think about where I go from here as still have all the symptoms , they may give me a mri scan but it's unlikely , I wonder if I didn't explain myself very well because i have a body that's not the same as it was last year n I feel quite sad that I'm seem to be the only one who can tell , driving is still useless , I hate doctors n hospitals I'm not an attention seeker so I think why do they think I enjoy going to the doctors so much , Thank you all for your thoughts I wish you all the very best and love , I think I prob came out the hospital disappointed really .

                              Comment


                                #30
                                Hi Chebs and Alan.
                                It's best to have the peg fitted while the body can still take the operation, I have to clean it, twist it and flush it every day even though she not being fed through it as yet, being able to swallow liquids, she was diagnosed in October last year and the peg was fitted this January, about 4 months after diagnosis.
                                I think I know what your saying about looking in the mirror, Mary was the same and had started pushing me away when I went to give her a hug or a kiss, and cry over the slightest thing, but she has changed a lot since taking the citalopram, accepting hugs and kisses, I tell her everyday I love her and together we will fight this terrible disease, even if there's not really anything I can do to help except give her all my love and attention.
                                She took a fall on Sunday and had to have 5 stitches above her right eye, I must confess this scared both of us, Mary because she finally realised that she's not 100 % steady on her legs now, although she still has mobility, needing frequent rests, but she refuses to give in and me because of the amount of blood and her uncontrollable shaking.
                                Mary and myself have, like yourselves, have never asked for help, maybe just the odd tenner until payday, we soon found out you have to ask because nobody is free with the information required, I found out on this forum what to ask and who to ask, which after the initial embarrassment asking gradually become easier, mainly through necessity.
                                At the moment we have a wonderful support team looking after Mary ( and myself ) from the cns, dietitian ect to the carewatch team, even the council have said they will do all they can to help ( not holding my breath on that one though
                                listen to Alan when he tells you that you are still beautiful, he is telling the truth, take care and all our best wishes
                                Tim and Mary

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