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Thread: My wife has been diagnosed with MND-ALS + FTD

  1. #1
    Dave K

    My wife has been diagnosed with MND-ALS + FTD

    Good afternoon.

    This is my first post here, will keep it short and to the point.

    My name is Dave (52)

    December 23 2014 my wife (68) was diagnosed with Frontotemporal Dementia and Motor Neurone Disease (ALS). Devastating News.

    I have been a full time carer from the start as I were self employed working from home. Sadly I can no longer do both so I gave up work on the 12 Dec 2014 to be able to dedicate my life to my wife 24/7.

    Although on the FTD side was expected which played a prevalent part in our lives for approximately 6 years the MND-ALS was a bit of a shocker.

    Now, I am pretty clued up on both diseases as I have done a lot of research on FTD for years but only a month for the MND-ALS.

    I do realise that FTD + MND-ALS is very rare (2 in 100,000). BOTH are terminal and there is no cure

    The reason I have come to this forum is that I would like to hear and share thoughts, Ideas, information with similar people that are caring the same types of illnesses my lovely wife has as I am finding support from similar carers nigh on impossible as I simply cannot find any.

    Thank you (in advance)

    Last edited by Dave K; 20th January 2015 at 14:17.

  2. #2
    You have come to the right place Dave, welcome to the forum. You may have done this already, but have a look at the many excellent publications which the MNDA produce.

  3. #3
    Dave K
    Thanks Trevor

    I have, well I think I have read every publication on the website over the past month, today I read the complete works of "End of Life Care' pretty sobering.

    Thank you

  4. #4
    We have that one as well, but sadly it has to be faced. I am writing this from a hospital bed in Papworth where they are looking at my breathing. You will get a lot of help and support from the forum, just wait and see.

  5. #5
    Hello Dave K, And welcome to this forum although sorry you have to be here with us.
    My husband has had FTD for 6 years although only diagnosed as Dementia 2014 and then actually full diagnosis of FTD with MND in September 2014.
    This is a wonderful site, with wonderful, caring, informative people on here.
    My husband is 75 yrs and first developed a slight change in personality when he was 67/68, but only I could see it, as to friends and family he seemed OK. It was only as time went on that it became apparent to others. I am 61 yrs, so luckily am quite energetic and competent to cope with Jims needs as time passes.
    I totally agree with you Dave, the FTD is hard enough to come to terms with, but when they told us he has MND we were just left reeling. Of course now we accept the diagnosis (by we I mean my family and myself) but Jim is in total denial he has anything wrong with him, which is probably a good thing as he is happy in his bubble. We are receiving a good deal of help and support from many people, who may I add the guys and gals on here pointed me to. We also have good support from the MND team at Liverpool and our GP and Hospice. I think you will find this site invaluable as time goes on. Also the MNDA connect are excellent if you have any problems.
    Springtime x
    Last edited by Springtime; 20th January 2015 at 16:35.

  6. #6
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Dave;

    Very sorry to hear of your wife's situation but you're very welcome here. There are people in a similar situation to you.

    Best wishes, Terry

  7. #7
    Forum Member Jan's Avatar
    Join Date
    Jun 2014
    Ashford Kent
    Really sorry to welcome you here Dave but you have certainly come to the right place for help and support

  8. #8
    Hi Dave I only joined the forum a couple of weeks ago but was diagnosed july2013. You will get loads of support here as I have found.
    Best wishes

  9. #9
    Dave K
    Firstly, I do apologise for not replying sooner. I have had a lot to sort out.

    Secondly, I would like to thank you folk for taking the time to reply to my initial post a couple of weeks ago (see statement above)

    I am not too sure where to start to be honest as I am new to this forum and am pretty clued up on the FTLD and now am very clued up on the MND-ALS. I am also very clued up on both FTLD with MND combined.

    I have researched (extensively) both diseases on their own and together, for what it's worth, what I do not know about the combination is really not going to be needed. I do not want to come across as a 'know it all' as I do not, I am just letting you lovely folk know that I have had time (6 months) researching FTLD plus (6 weeks) researching MND-ALS with FTLD. I have spent hundreds of hours researching, observing my wife and countless trips to the Barnsley Memory Clinic, Hospitals, Social Services and everything else that goes into caring, understanding my Wife's illnesses.

    I gave up work at the beginning of December 2014 to care for my wife and although my wife had being showing FTLD symptoms for around 6-8 years I did not suspect the MND-ALS, shocker that one, but when I study both of them together the findings are not very similar to my wife's illnesses, they are an EXACT carbon copy of how she is and has been showing for the past 12 months.

    I do not need help with the financial side of things as I have successfully claimed, for my wife: Guaranteed Pension Credits, Attendance Allowance, Housing Benefit and Council Tax (My wife is in receipt of all of these entitlements). I am awaiting on my Carers Allowance still which could not be claimed until my wife was granted Attendance Allowance) - So I have sorted the financial side of things out relatively easily (online forms and submissions)

    The reason that I am registered to this forum was to find other similar folk (carers / family members) that are going down the same road as My wife and I am.

    I am finding it very hard finding folk that have FTLD + MNS-ALS (combined), other forums are mainly Dementia based, no one on these forums can offer advice and support for BOTH which I find very frustration, although similar to begin with (hence the reason it took 12 months for the MND diagnosis) to which I can completely understand, 2 devastating illnesses which BOTH are terminal.

    So the prognosis is not good. My wife has lost so much independence that she is very frustrated mainly as she is complete denial even though her memory is basically to the end of a sentence (short term only, long term is fantastic, better than mine even)

    I am 52, my wife is 68, we have been married for 26 years. (Just to give an idea on the both of us)

    I do have a lot to offer, be it advice, health, finances etc. as I have gone solo from the beginning as I wanted to know what it was I were dealing with, how it all works. finding all relevant information, discarding information not needed.

    What I am missing is being able to communicate with folk in the same boat as I find myself in. It is very hard to understand the symptoms, problems and differences from FTLD or MND if you have BOTH.

    Thirdly, I apologise for the length of this post. When I get thinking I find it hard to stop my brain and fingers from going overboard.

  10. #10
    Hi Dave,

    Nice to hear from you again. When you have done I think its 2 more posts you will be able to send and receive private messages, I think I am correct with this information but if I am wrong I am sure somebody will soon come along and rectify the mistake.

    As I said in my previous post to you, it looks as if we are in a very similar boat. My Jim is also in complete denial that he has anything wrong with him. His short term memory fluctuates, but long term is as you say better than mine. He is never aggresive and is very happy and contented, but he always has been that way.

    I try to look upon the denial of MND as a blessing for Jim, as I don't think he would cope well otherwise and cetainly wouldn't be as happy as he is now. Of course its hard as a Carer, because we have to make decisions about their needs, and try to legislate for their needs in the future, so it can seem a lonely road at times. I was speaking with a gentleman yesterday at the MNDA meeting for Cheshire, who had lost his wife 5 years ago. She also had FTD/MND and as we spoke there were some FTD symtoms the same and others were so different, indeed just like MND is different in everyone.

    You have obviously done much research and so I think like all of us it is just accepting how different every patient is. I think we would probably all like to be told a little more in the way in which, we can expect this road on our journey to take, but everybodys road seems so different.

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