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witsend
29th August 2011, 22:43
Has anyone experience of caring for someone with FTD/MND.

I am currently considering the possibility that my husband who has MND has also the symptoms of FTD

Jeannie
30th August 2011, 11:01
To my knowledge it is rare for someone to have Frontotemporal dementia Motor neurone disease. What makes you think your husband has FTD? I would personally seek medical advice.

Chris
30th August 2011, 11:28
A lady in our support group has been through this, her husband had it, she told me it did make things very difficult.

Nuwar
3rd November 2011, 14:17
My dad also has FTD as well as PBP MND, life is difficult and we are looking to make contact with anyone who has experience or knows about the care side of this combined condition.

so any and all offers gladly looked into.

MattJ
3rd November 2011, 20:48
No experience of FTD but this recent article might be of use:

http://alsn.mda.org/article/when-thinking-parts-brain-go-awry-als

Seems it might be more common than I thought.

Nuwar
4th November 2011, 08:36
In the Grimsby area I know of my dad with FTD MND and one other person who has MND with Alz. that 2 out of 11 in our area.

Thanks for the link MattJ and interesting article. Printing it off atm so Mum can read it.

computatec
4th November 2011, 18:38
Hi Matt,

I have noticed changes in myself, mostly to do with problem solving and processing complex information.

Clive

SR8
28th June 2018, 13:56
Has anyone experience of caring for someone with FTD/MND.

I am currently considering the possibility that my husband who has MND has also the symptoms of FTD

My husband has recently been diagnosed with FTD MND. It came as a massive shock to us even though we were noticing changes in him: physically: gradually he has lost the use of both legs and is completely bedridden, cannot sit up let alone walk. We noticed changes in his problem solving abilities, planning, processing information, spatial awareness and attention span. It feels like we have been hit by a brick. It is especially difficult for my husband as he was a highly intelligent, articulate, professional man and is now reduced to asking our kids for help when using the internet on his mobile phone for instance. He is now finding it difficult to hold the mobile phone so we are waiting for the Speech and Language Therapist to visit us to advise us about various aids to help him. His hands are getting weaker by the day so I bought some disposable lightweight plates for him - the sort with raised sides as normal plates were too heavy. He uses lightweight beakers for water/juice at the moment as again, normal tumblers are too heavy for him. We have just received a Non invasive ventillation machine a Nippy 3+ to help him breathe well at night and get a good night's sleep as he had all the symptoms of too much carbon dioxide in his system, as his lungs were not expelling it properly. At the moment he is going to use it at night and then he can use it in the daytime too should he need to. My husband is scared of what is to come - he has good days and not so good days: days when he is philosophical about it all and accepts that he has the disease and days when he is frightened more about the intellectual problems associated with the disease than the physical problems. Not being able to speak would be horrendous for him. Life is not easy but all we can do is to make the best of the time he has with us. I am fortunate in that my kids are very supportive even though they were devastated when they were told the diagnosis. We have always been a very close family and it is not easy seeing a loved one deteriorating in front of your eyes and not being able to stop it - a very cruel disease indeed.

Jaxx
28th June 2018, 23:23
I totally agree with your last paragraph, watching this disease unfold in a young woman (my daughter) who had months before given birth to her second child and cannor carry, or cuddle him without someone putting him on her knee and cannot look after him without someone else being there, her 8year old is in a daze, and we all cry all the time.

SR8
3rd July 2018, 20:04
So sorry to hear this. All we can do is be there for them. I cannot even begin to imagine how your daughter must feel not being able to care for her children. I totally understand what you must be going through: watching your daughter going down and not being able to help her. I feel helpless too watching my husband going downhill. I find myself suddenly getting teary in the supermarket, or while driving or while cooking. I cry, but not in front of him. This is such a cruel disease and it is impossible to not be affected seeing our loved one suffering. My kids are very supportive but I know how very upset they are and I broke down when my daughter said to me the other day "I cannot imagine a world without dad". My husband is a wonderful husband and father - we are finding his diagnosis very difficult to cope with but we put a brave face in front of him and others. I do notice that people we thought were friends and who know about his diagnosis, have not called to see him or even phoned: I guess they don't know what to say.

broken_nails
21st September 2018, 22:01
Well if you read about the mnd that goes inappropriate laughing and crying, psychosis, personality change (FTD) motor symptoms. Then you have read a textbook of how my Mum is she's waiting on mnd dianosis but over the years it went likely cva, elderly onset schizophrenic type illness, likely FTD.

Namay
21st September 2018, 22:59
Your experience sounds so similar to ours! My husband is also extremely intelligent, articulate etc. His biggest fear is also loss of speech and cognitive ability. Our children are similarly devastated, as am I. The crying is quite annoying isnít it?! No control over it, it just overtakes sometimes.
For us I think itís the speed of this thing. In 3 short months he has become almost entirely wheelchair bound. We were/are so unprepared for it, itís overwhelming. Tonight he is sleeping on the sofa as he can no longer get up the stairs. Tomorrow my job will be to try and make a bedroom for on the ground floor. But our house is so old and quirky, space is a problem.
But as you say, the worst thing is watching him struggle to do things heís always done so easily and readily.
My very best wishes to you.
Jen xx

Terry
22nd September 2018, 00:41
Well if you read about the mnd that goes inappropriate laughing and crying, psychosis, personality change (FTD) motor symptoms. Then you have read a textbook of how my Mum is she's waiting on mnd dianosis but over the years it went likely cva, elderly onset schizophrenic type illness, likely FTD.

Hi Broken nails,

Mnd can have their frontal lobe area of the brain affected but it does very quiet a bit.

I had mine affected quite early on but it has not changed much over the seven years or so.

Love Terry

Terry
22nd September 2018, 00:42
Hi Jen,

I do feel for you and your situation.

Hugs Terry

broken_nails
22nd September 2018, 00:44
Best wishes to you too Mum has lost a good
60% muscle mass since Feb more recently her entire face has changed and her voice has lost all animation. I think the FTD part has made her less aware of what is happening she thinks fasciculations are trembling in her legs or abdomen. The tears have been going on for 15yrs or more now so kind of used to them it's the fluctuating attention the railrode thought processes for some things while distracted to hell and back while doing things that have to be done in timely manner and complete inability to prioritise alond with self neglect that cause us distress to see it's like mum was replaced by an alien sometimes

Lynne K
22nd September 2018, 09:42
So sorry that your husband has had to sleep on the couch. Have you got a downstairs bathroom, else how are you both going to manage in that department. I have a similarly querky house but I can just about get up and down stairs because of the extra banister rail provided by our local council. I'm looking forward to having a much easier bungalow in the near future. Is that a possibility for you? How are you doing today? Lynne

Lynne K
22nd September 2018, 12:06
Deleted duplicate

Namay
22nd September 2018, 13:17
:rolleyes:Thanks Terry and Lynne. I paint a bleak picture, but we try to stay positive! We have a downstairs bathroom, which is helpful in part. In the last few days heís been unable to get into the shower (over bath).
Lynne he said he had the best nights sleep for ages last night! Itís a leather sofa, which makes it easier to turn over, and his feet were elevated so were more comfortable. (The cat also enjoyed having a lovely duvet to snuggle into!)
All the difficulties can be dealt with over time, we just seem to get no time to deal with one problem and the next one presents itself! As I keep saying, the speed of it is startling!
Ultimately we will, of course, have to move. Our home is simply not practical for him. But first we have to get rid of stuff! Lots of stuff!
Thanks for your kind thoughts. It does help to know weíre not alone.
Take care everyone...Iím sorry to have high jacked the original post :eek:

Lynne K
22nd September 2018, 13:38
We have to get rid of loads too Namay. It's hard isn't it. I'm glad that your husband had a good night's sleep. I use headphones in my mobile and listen to www.sleepradio.co.nz every night that helps me to relax. There is a free app for all devices and info on the site about how it got started. Lynne

Ellie
22nd September 2018, 15:21
Hi Jen,



His biggest fear is also loss of speech and cognitive ability.


Losing the ability to speak and/or cognitive function is not inevitable. Notwithstanding the emotional and psychological effects of losing one's speech, there are efficient and effective ways of communicating - albeit no real match for a lively chat. It just requires patience and understanding from the other party.


The crying is quite annoying isnít it?! No control over it, it just overtakes sometimes.

That sounds like your husband has Emotional Lability (aka Pseudobulbar Affect or PBA) A significant proportion of us with ALS have it to some degree and it's neurological in nature, not psychological.

Emotional Lability causes people to cry or laugh uncontrollably, often suddenly and frequently, for no apparent reason. It can also lead to exaggerated emotions.

Some people find taking an antidepressant eases their EL/PBA - thought it is not depression (psychological in nature) - maybe your husband would benefit from taking them too?

Best wishes,

Love Ellie.

Namay
22nd September 2018, 21:40
Hi Ellie
I think he knows it’s not inevitable, it’s just the thing he would find hardest if it happens. There’s no sign yet, thank goodness!
As for the crying....that’s me!! I’m the emotional one. I cry at adverts on tv, so I’m hopeless in this situation! It’s just that it does seem to catch me out at most inconvenient moments currently. But again, this is all still so new for us, I’m sure it will get easier to cope with (I’m also an optimist!) or at least the MND will become the norm so we’ll learn to live with it. Thankyou for the information though. I really appreciate you taking the time to explain.
Take care
Jen xx

Twinkle
16th October 2018, 00:07
The worst thing about my husband's MND for him is loss of speech. We always used to say he can talk a glass eye to sleep with his talking lol
He misses it so much.

teynhambees
25th November 2018, 21:46
I went for an MRI this morning as I've had recent psychological tests that were repeated in August this year and it has shown a slight deterioration in my Cognitive impairment. I have left the entire house unlocked, left car keys on a car overnight, left the oven glove trapped in the oven door and constantly swap my dog to a cat, fumble for words and word retrieval. I've NOT been diagnosed with FTD but that will be reviewed if there are any changes in Feb 19 when I see my Neurologist. It's worth mentioning that I have Kennedys yet I have several features unique that have previously unreported and since had journals written about my symptoms, which include Urological dysfunction. It does feel scary forgetting names within seconds of someone new telling you their name and I no longer play an active role in financial matters as I swap numbers and miss things. Maybe, the answer is to seek Psychological tests to see how the Cognition is and then go from there? I think I read that 5% of MND patients can develop FTD, which seems quite a small figure. Good luck and hope you get somewhere.

Ellie
26th November 2018, 16:01
Sorry to hear of this.

Did you get the MRI results yet? I imagine they were looking for changes to the brain.

Testing for FTD is done by a Neuropsychologist.

Unfortunately you can add a zero to the 5% of those with an MND have some degree of FTD involvement and a recent paper had a figure of up to 80% affected by end stage ALS.

I am quite shocked and scared by these figures, but some cognitive changes are subtle.

Love Ellie.

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