Agony of non-diagnosis...

Pb46

Registered User
Mar 9, 2016
24
0
Ulverston, Cumbria
I hope you dont mind me answering the question directed at feeb, but I suspect that the reason that they are thinking about Huntingtons is because the symptoms of Huntingtons are the same as FTD with ALS - just caused by a different thing. A genetic test would easily confirm/rule out Huntingtons. I hope you get some answers soon.

Thanks Canary, never thought about that, gives me much more food for thought. I agree with Feeb, although outcomes are pretty much the same a clear diagnosis can help give you some idea of what symptoms/ behaviours to expect. I know clear diagnosis is difficult at times but having your diagnosis queried ( like in our case, and Feebs) does add stress to the situation greatly!!!!
 

feeb

Registered User
Sep 4, 2016
17
0
North East
Update

I wanted to post an update re my husband's diagnosis. We still have tests results outstanding (Prions and Huntingtons) but I had a long talk with the neurologist on the 'phone yesterday and her conclusion is that OH "very probably" has FTD. This hasnt come as a shock - I think I accepted the idea that he has developed dementia a few months ago. After reading about FTD and posts of this forum I am not surprised by this opinion. My step-son is living with us at the moment and I feel bad for him. He is a (sometimes surprising) source of support. I also get a lot of support from my husband's brother and his wife, both of whom have nursing backgrounds and a lot of professional insight.

This is a new (year old) marriage although I have known my husband for decades and we have been together about 4 years. I am still feeling somewhat shocked and cheated, and am keeping myself together by reaching out and trying to get a network together and by trying to make practical plans (actually I feel as though half my time is spent trying to get legal/financial stuff in some sort of order). It does feel a bit better to have a firmer idea of where we are; hopefully we can now move on a bit, e.g. looking at early retirement.

I bought (an ebay) jacket the other day and came downstairs in it. My husband said, "Darling, you look lovely in that cake." Isnt that lovely?
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hello pheeb. Im glad you have got a (probable) diagnosis now.
Yes, the time after diagnosis is often taken up with sorting legal/financial stuff in place. I do hope you have managed to sort out wills, POA, PiP (and if he gets that you can claim for carers allowance) and council tax disregard (but thats only worth it if there are only 2 adults in the house). Retirement can work well. My OH took medical retirement and I took early retirement. Fortunately the house has no mortgage now.
 

feeb

Registered User
Sep 4, 2016
17
0
North East
Many thanks

Hello pheeb. Im glad you have got a (probable) diagnosis now.
Yes, the time after diagnosis is often taken up with sorting legal/financial stuff in place. I do hope you have managed to sort out wills, POA, PiP (and if he gets that you can claim for carers allowance) and council tax disregard (but thats only worth it if there are only 2 adults in the house). Retirement can work well. My OH took medical retirement and I took early retirement. Fortunately the house has no mortgage now.

Hi Canary

Many thanks for your advice. I am part-way into wills and POA. I havent done anything about PiP - I'll add it to the to do list. My next job is going to be seeing the GP by myself to discuss how to manage the next few months and to see what onward referral the GP can make. I am also getting on to early retirement. I'd be very grateful for any advice re support for FTD; you mentioned a specialist forum in an earlier post? I hope you are enjoying your weekend.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Im glad you are getting on with wills and POA - they caused my OH so much anxiety with muttering, pacing and explosive anger I breathed a sigh of relief when he signed.
I would recommend that you get CAB or Age UK to give you a hand in filling in the PiP forms when you start as FTD is quite unusual and many people do not understand it, but CAB/Age UI know the "buzz words" to use and the way of describing things.

The specialist forum that I use is this one http://www.ftdsupportforum.com/ It is based in USA, but has members from all over the world including quite a few from UK. I dont tend to talk much on here about my OH as it might get back to him, but that is a closed site that you have to be a member of before you can see anything.
 

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