Mnd and ftd

[denise]

I am looking for a forum that covers either mnd and ftd or just ftd. No idea if parting one from the other will make a difference? I have been in contact with the rare dementia association and local dementia hospital support. What annoyed me is after fighting for a ftd diagnosis they left off the fact my husband has mnd.

a lot of forums are from the USA and a few UK but seem to be a few years old.

I'd appreciate some suggestions. Most of the information I am receiving is zoomy based. I was even told I'd be better off living in a big city closer to London to attend lectures - thought Plymouth was big enough and when have I got time to attend lectures??

So any help please.
Denise 😐

[LindaB]

denise you could contact the Alzheimer's Society and they may be able to sign post you to other specific groups👍🏻😘

[denise]

I've just read and downloaded help sheets from their site. Its mainly meds and that phrase 'varies in different people' looks like Stephen had ftd and then mnd. Not that this helps much. Also there are ftd variations.

Funny I never had use for algebra and suddenly I've found a use. So far I haven't worked out the answer and have the strangest feeling I never will.

🤔

[denise]

letter received today from the dementia advisor service, plymouth

this service's aim is to provide you and those that support you with information and guidance concerning your diagnosis of a dementia. those sessions are postponed but we will contact you when the virtual or the face to face sessions will restart. there will also be indiviidual contact with your dementia advisor in 4 months but in the meantime you can contact the service for advice and information.

ive waited how many years for this diagnosis and another 6 months to get a final diagnosis and now another 4 months. honestly i give up.

[Piglet]

denise Hi Denise. I think my husband has cognitive problems too. I’ve read that 50% of people with MND will not have any cognitive changes. 35% will have cognitive changes and 15% go on to get Frontotemperol dementia.
My husband presents with lack of awareness into his condition. He knows he has MND and when initially he was diagnosed became quite withdrawn. However after approx six months he became quite over friendly with people he didn’t know and appeared then not too be bothered about MND. He has remained very cheerful and friendly. There is apathy, he would sit all day watching t v if allowed. He is not retaining what he is watching on t v when I ask him what the programme is about he has no idea. He still enjoys watching it. His memory is spot on. He can at times be little outspoken and says it as it is. I’m glad he lacks awareness into his condition as he dos,nt get upset about it but he has no idea how his condition affects me. He is in his fifth year now and is deteriorating physically quite quickly now. The MND nurse is aware of cognitive changes but there is little they can do for this. Those that go on to get FTD may display aggressive behaviour, so treatment to help with difficult behaviour like small dose of Lorazepam or the likes but no other actual treatment. Not sure if the above helps but thinking of you anyhow. Take care, I know it’s hard!! Xx

[Johnny5]

Of interest on ALS-FTD

[MNDConnect]

Hi Denise,

Thank you for your forum post. Apologies for the delay in our response time, we are experiencing a busy period currently.

Please see the links below that you may find useful:

FTD forum : https://www.ftdementia.co.uk/blog_live.htm

Dementia Talking Point via the Alzheimer’s Society https://www.alzheimers.org.uk/get-su...-talking-point

Rare Dementia Support https://www.raredementiasupport.org/meetings/

Admiral Nurse Dementia Helpline via Dementia UK- Although this isn’t a forum, you can speak to a dementia specialist Admiral Nurse via their freephone number. https://www.dementiauk.org/get-suppo...mers-helpline/

I do hope this is helpful.

With kindest regards,
Prachi
MND Connect Adviser

[Banned]

Oh Denise,

You have major problems and you get fobbed off so many times.

I know exactly what you are going through.

Do you have any 'muscle', maybe your son? Your social worker and GP really must get their finger out and unfortunately the 'Riot Act' has to be read at times like this.

Love and cuddles xxxx

[Shaun wheadon]

Hi all
my wife Tracy starting showing some “different” behaviour.
I read a lot about FTD and all of the symptoms shown in the Alzheimer’s website, she was showing 95% of them.
Our neurologist got her an appointment to see a professor at King’s hospital (video call )
He done some physical and mental tests and agreed she needed more tests, we have now been for neuropsychology tests. This was hard to watch as she didn’t do very well on most of the tests.
Just another one of the challenges of this disease.
as I’m writing this Tracy is in hospital with a lung infection.
it we didn’t have bad luck, we would have no luck at all !!

[Ellie]

Oh Shaun, I'm awfully sorry to hear of this development.

... as I’m writing this Tracy is in hospital with a lung infection

Hopefully Tracy will respond well to the antibiotics.

Love and best wishes to you both. xx

[Shaun wheadon]

Hi Ellie
antibiotics seem to be working, she was booked to have PEG at 9.30this morning, that’s now cancelled

[denise]

Yes its been hell. I've pushed and pushed for a diagnosis then when I get one 4 months before an assessment can be carried out so I'm basically getting on with it. I've looked at all the above but there is nothing like this forum. I've been in touch by phone and email and basically all services are not functioning due to covid. Its just hopeless. To be honest things are getting worse. Even the telephone support calls are cancelled even the online support isnt up and running. Community nurse is back on the ward. I'm just winging it. Everyone says you are doing a good job. You're amazing. Well yeah but how many times have I picked up my car keys. I saw the doctor due to a multitude of things but they cant push me out quick enough. Then I get phone calls from doctors saying how sorry they are that I'm not coping and what can they do? Fine but they should know what they can do. Funny that I have no medical training. I just see things they dont even have time to investigate. Sorry for the rant but honestly I'm dealing with people who do not know mnd and do not know ftd and sure as hell dont know that the 2 can go together. I'm sharing my knowledge with them not the other way round. This is not going to end well. 🙁

[DeeH]

denise

So sorry you are going through this.

I can't believe the run around you are getting. Both my parent have dementia and it took 8 months to get dad alocated a social worker.

There is literally no bodies on the ground. They will supply me with expensive equipment but still waiting to alocate a social worker for Thomas.

Both parents have dementia of more than 10 years. I am a trained nurse and honestly it doesn't help much, I am still a paniced mess.

All my parents day centre stuff and gym etc have been cancelled due to COVID and not starting back anytime soon.

All on my lonesome with Thomas too.


I found forums difficult for dementia as both parents diagnosed before the age of 60 and physically fit so not as common a experience.
I found the information about FTD in the MND literature with a sinking heart because the thought of 3 of my loved ones with dementia at the same time.
Bloody Hell

So I am shocked at the lack of knowledge.

Rant away, I pop on here nearly daily and look forward to hearing about the meeting with the MP.
I generally rant away on private groups on Facebook as I don't want to depress folks on here, you have all been so great in the last 18 months.

Best wishes

Donna

Carer for husband diagnosed MND of Fail Arm type in July 2020

[denise]

Donna 😘

[Ellie]

antibiotics seem to be working, she was booked to have PEG at 9.30this morning, that’s now cancelled

Understandable that the PEG procedure was cancelled or postponed, let the antibiotics do their best for Tracy first. xx