New to forum FTD/MND

[LillyC]

Hi, I have summoned up my nerve to post !
I am a full time carer for my husband who was diagnosed with FTD/ MND 3 years ago. I have not come across anyone with the same diagnosis and wondered if anyone has had a connection to this rarer form . He has ALS form of MND and has recently lost the use of his hands. It is has been very difficult and upsetting but I know how supportive the forum is. Many thanks for reading!

[matthew55]

Hello Lilly, well done for joining us. There are so many people here who will help with good advice and humour. Stay Strong 👍x

[Ellie]

Welcome Lilly - sorry you've had to join us though but glad that you took the leap and posted 😃

Yes, unfortunately FTD can sometimes go hand in hand with ALS, to varying degrees.

Physically, is it 'only' his hands which are affected at this stage?

I hope you both have good support from your MND Clinic and/or Community Services.

There are some people here whose partners have FTD along with ALS/MND but they may not be online for a while. Feel free to ask any questions, have a rant or a weep with us.

Look after yourself too.

Love Ellie.

[Barry52]

Hello Lilly,

Welcome to the forum and I sympathise with your situation. I had a friend I met through the local MNDA branch and he had FTD MND and he would make us laugh at our meetings. His husband would recount the tales of holidays and one story I remember is when his wheelchair got caught up in a ladies skirt. I don’t wish to make light of your situation but we do need to find humour when coping with this disease.

Best wishes to you and your husband
Barry

[LillyC]

Thank you all for your responses.
Unfortunately Ellie he has half a paralysed diaphragm and uses a NIV every night and has started to use it a-lot more during the day. I think the cooler weather affects his breathing.
He is usually very happy and as Barry noted ,he can be hilarious at times but the FTD can cause a lot of trouble as he has no filter and says exactly what he sees or what he thinks.
lack of empathy and being unable to discuss his feelings or planning anything together does not happen anymore.
I just wondered if other FTD/ MND sufferers struggle to convey if they are in pain ?
sorry for the long text I must learn to shorten them !
Lilly

[Ellie]

I just wondered if other FTD/ MND sufferers struggle to convey if they are in pain ?

I know from previous people on the Forum that, yes, this can really be an issue unfortunately. Sometimes partners and carers learn the cues, some affected people can use picture cards as communication aids, and others played the guessing game.

Does your husband have regular assessments by the Neuropsychologist in the MND Clinic and/or a Speech and Language Therapist? You really should have support, albeit in-person Clinic visits are somewhat curtailed during these Covid times, video appointments are valuable too.

I'm sorry you're both going through this.

Love Ellie.

[DeeH]

Hi LillyC

So sorry to hear of your issues, my husbands onset is his arms and has some brain fog.

My parents have dementia, there is support and information about FTD which can affect people much younger. There are online support groups and getting information and advice from a dementia side of things may help. I rant a bit on some Closed dementia Facebook Groups. Dementia may make the person appear self centred but the person only has the brain power to focus on themselves. Dementia of whatever type is very hard to cope with as a carer, as you can no longer be a team with the person you love. My parent's can be quite emotionally absent at times, where as before they were supportive. I am grateful everyday that husband and I can communicate. My heart sank a little when I read about the potential of FTD.

Dementia caused sight and sensory issues with my mum so I got help and advise from Austism groups and the Scottish War Blind. Do not feel you only need to get help through MND but think of the FTD as a co illness. Connected by the affects of the brain but needing seperate support.

If you need more information, you could message me as there are a variety of support (I hope in the time of COVID), don't expect many people to know about MND in the dementia world, FTD is not as common as Alzheimers or Vascular but not too rare. I have had over 6 relatives over the years with variety of dementia's but only know my husband with MND.

I hope you get the support you need. You can get carer support for the dementia side of things.

Take care

[matthew55]

I have to say that when my mother, who had Altzimers, didn't know who I was it was the worst day of my life, ever. 😞x

[Lynne K]

Hi LillyC. Sorry for all that you and your husband is going through. It’s smashing that you built up the courage to post on here and I hope that you will find it helpful, love Lynne

[Secondhand]

This is first time for me my husband died on 11th September this year he was diagnosed with mnd two years ago. We went through all the things posted about mnd but it was a journey we had to take. We did it together I promised he could stay home and that we would do things ourselves he was very embarrassed about other people seeing his weaknesses. We did it together the last couple of weeks were difficult. I’m alone now but still feel he is around and have wonderful memories of the last 50 years

[Ellie]

Welcome to the Forum, Secondhand, sorry to hear of the death of your husband.

50 years, wow, amazing! Yes, you must have so many good memories to draw upon and give you comfort and feel his love.

Thank you for posting.

Love Ellie.

[bromleycross]

Following numerous tests I have just been diagnosed with MND , suppose I had an idea this was coming but feel numb it’s such a lot to take in .
I have been prescribed Riluzole 50mg twice daily ( subject to satisfactory blood results) has anyone taken this with good effect?

[Ellie]

Hi Bromley and a warm welcome to the Forum.

Regarding Riluzole, the first thing to hope for is to have no side effects and for your liver to tolerate it.

The reality is that no one can say if it extends their survival, but the real world experience says that people taking Riluzole tend to survive longer than those who don't.

If you do find yourself wiped out in the first few weeks, many people reduce the dose to one 50mg tab per day for a short while, then increase back to two tabs with fewer side effects - if that's your experience, ask your doctor before changing dose.

Love Ellie.

[bromleycross]

Thanks Ellie for the advice - finding this all very difficult at the moment 😢

[matthew55]

It is what it is I'm afraid. Stay Strong 👍x