Fronto Temporal Dementia and Motor Neurone

[grrth1314]

Hi everybody,

I am wondering if anyone has any experience of your partner having both dementia and Motor Neurone disease...seems like its more likely to happen if you have Fronto Temporal Dementia (FTD)...may partner was diagnosed with FTD in October last year, and then last week she was also diagnosed with Motor Neurone (MND)....believe this is very rare, and whilst some of the symptoms are the same (swallowing, speech, etc) it means that her expected life span drops from 6yrs to 2yrs...i know its a long shot, but just wondering if anyone else has been through the same?

Thanks
Gareth

 

[Bunpoots]

Welcome to the forum @grrth1314

I’m not sure if we have anyone else on the forum with exactly the same condition as your wife. There seems to be a wide variety in dementia presentation so I’m sure you’ll find people dealing with the same sort of problems as you and your wife will face. Hopefully we’ll be able to support you through this journey whatever it brings.

 

[canary]

Hello @grrth1314

My husband doesnt have FTD with MMD, but he has symptoms similar enough for the neurologist to think that he might have this, so I may be able to help with practical advice.

 

[grrth1314]

hi @canary sounds like we may be able to help each other as things change...i am due to speak to gp/consultant/social worker etc now we have the diagnosis so i can let you know what they say

 

[canary]

hi @canary sounds like we may be able to help each other as things change...i am due to speak to gp/consultant/social worker etc now we have the diagnosis so i can let you know what they say

👍

 

[grrth1314]

so i've now spoken to my partners consultant and she has now been referred to a MND specialist given that is the more aggressive of the 2 conditions...will also mean that her timeline will be a lot shorter, especially given her MND symptoms first presented themselves with speech and swallowing, rather than her limbs...it will mean a lot more specialists being involved such as respiratory specialists, and im already having to consider Do Not Resuscitate orders and early conversations with pallative care given FTD-MND can be quite aggressive....does also mean she is likely to be considered for continuing healthcare funding...

 

[Snooze1]

so i've now spoken to my partners consultant and she has now been referred to a MND specialist given that is the more aggressive of the 2 conditions...will also mean that her timeline will be a lot shorter, especially given her MND symptoms first presented themselves with speech and swallowing, rather than her limbs...it will mean a lot more specialists being involved such as respiratory specialists, and im already having to consider Do Not Resuscitate orders and early conversations with pallative care given FTD-MND can be quite aggressive....does also mean she is likely to be considered for continuing healthcare funding...

My husband was diagnosed with FTD earlier this year and originally with MND, after many tests they have not totally ruled out MND but the dementia side is winning at the moment. He is now in a care home but his mobility has started to be affected, very shuffly and lots of pain in his joints but still able to feed himself. He was told a year ago he probably had 2 years but that was before he had more tests. TBH he really is unaware what’s going on and his world has become much smaller. This will be my 1st Christmas without him at home. Reflecting back I think his first symptoms started about 2/3 years ago, as he had swallow problems occasionally but it took another year before he had some sort of diagnosis. He started this horrible journey aged 63 and now he’s 66. He qualified for CHC at the moment but he’s review is in February. We had a very proactive social worker who helped me with all the paperwork and was with us during the assessment. Hopefully you have LPOA sorted as it’s essential and make sure you document everything. I have agreed to a DNR after lots of chat with GP. You have a lot ahead of you, take it easy on yourself…..dare I say merry Christmas. I’m not feeling it this year and will be with my husband for Xmas day but nothing else.xxx

 

[canary]

Im so sorry to hear of this progression @grrth1314

It is a shock when people start talking about DNR etc, OH has a DNR, but he will still be treated for other things. Have you had the SALT team involved? they are very good with swallowing problems and can advise about what sort of consistency is required. OH has to have a "soft diet" but doesnt yet need pureed food or his drinks thickened.

 

[grrth1314]

My husband was diagnosed with FTD earlier this year and originally with MND, after many tests they have not totally ruled out MND but the dementia side is winning at the moment. He is now in a care home but his mobility has started to be affected, very shuffly and lots of pain in his joints but still able to feed himself. He was told a year ago he probably had 2 years but that was before he had more tests. TBH he really is unaware what’s going on and his world has become much smaller. This will be my 1st Christmas without him at home. Reflecting back I think his first symptoms started about 2/3 years ago, as he had swallow problems occasionally but it took another year before he had some sort of diagnosis. He started this horrible journey aged 63 and now he’s 66. He qualified for CHC at the moment but he’s review is in February. We had a very proactive social worker who helped me with all the paperwork and was with us during the assessment. Hopefully you have LPOA sorted as it’s essential and make sure you document everything. I have agreed to a DNR after lots of chat with GP. You have a lot ahead of you, take it easy on yourself…..dare I say merry Christmas. I’m not feeling it this year and will be with my husband for Xmas day but nothing else.xxx

my partner sarah is 50yrs old and has had dementia symptoms for at least yrs now...in the 18mths to get a diagnosis i managed to get POAs in place, sort out finances and funding etc...sarah has progressed quite quickly in the last 12mths, moving a food rating of 8 to a 5 within 5mths and even then she struggles with swallowing...given that her first symptoms are showing themselves in her throat, this likely means we have about 6-12mths left together...due to speak to our 12yr old and 21yr old tomorrow to let them know the latest update...CHC funding is getting put in place, plus all the different specialists, although luckily we already have £40k of funding in place from the council....given i have already faced a number of difficult challenges in my life, from suicide, addiction and many other things i feel like i am used to handling these things, and hopefully my counselling training will help with the kids...

 

[grrth1314]

Im so sorry to hear of this progression @grrth1314

It is a shock when people start talking about DNR etc, OH has a DNR, but he will still be treated for other things. Have you had the SALT team involved? they are very good with swallowing problems and can advise about what sort of consistency is required. OH has to have a "soft diet" but doesnt yet need pureed food or his drinks thickened.

hi @canary ...sorry to hear about your partner...sarah is also already on 'mashable' food and drink thickeners...speech therapists have been involved for around a year now, and now there will also be respiratory specialists, occupational therapist, social workers, community nurses, hospices, etc..

 

[canary]

sarah has progressed quite quickly in the last 12mths, moving a food rating of 8 to a 5 within 5mths and even then she struggles with swallowing

Oh wow. I can see that my enquiry about whether you had got the SALT team in place was unnecessary!
Im so sorry it is all happening so fast. Good job you got the POAs, finance etc sorted out early
((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))

 

[Snooze1]

my partner sarah is 50yrs old and has had dementia symptoms for at least yrs now...in the 18mths to get a diagnosis i managed to get POAs in place, sort out finances and funding etc...sarah has progressed quite quickly in the last 12mths, moving a food rating of 8 to a 5 within 5mths and even then she struggles with swallowing...given that her first symptoms are showing themselves in her throat, this likely means we have about 6-12mths left together...due to speak to our 12yr old and 21yr old tomorrow to let them know the latest update...CHC funding is getting put in place, plus all the different specialists, although luckily we already have £40k of funding in place from the council....given i have already faced a number of difficult challenges in my life, from suicide, addiction and many other things i feel like i am used to handling these things, and hopefully my counselling training will help with the kids...

 

[Snooze1]

You really have a difficult road ahead…. sounds like you’ve got the practical side covered and I hope the conversation with your children isn’t too difficult. My youngest is 21 and he has been brilliant and supportive but I’m not sure how I’d have dealt with a 12 year old. Wishing you all the best for the new year and keep yourself healthy x

 

[grrth1314]

yes its not going to be easy...told the boys on saturday and they took it as well as can be expected...lots of good advice out there on how to handle those conversations...