FTD/PSP both?

[ScottLoft]

Hello, I am new to the forum. My wife is 52 and was diagnosed with FTD before being diagnosed with PSP about a year ago. She was driving last February and now she exhibits no emotion and barely speaks. She just watches the same sitcom on TV over and over, I can't believe how quickly this is moving, is it uncommon to have a sort of hybrid PSP/FTD? I can't believe she will be able to remain in home a year from now, she will end up in a memory care facility.

[Kevin_1]

Hi Scott

I'm sorry to here your plight. Welcome to the forum.

I have no experience of this, sorry.

It does sound unusual.

Hopefully someone else here might help.

Best

Kevin

[easterncedar]

Oh, how very sad. She's too young for this, and that seems a terribly fast progression. I'm sorry.

I have often thought that the different diagnoses reflect only the locus of the attack, rather than the nature of the disease. Everyone is affected individually, and a complicated diagnosis is perhaps an expression of the far end of a spectrum -- much help this speculation is for you.

A while ago I asked folks to share something of their life stories outside of PSP. I had some wonderful responses. I'd be glad to know you and your wife better, if you'd be comfortable sharing your stories, too.

Best wishes, ec

[daddyt]

Hi Scott,

Welcome to this site, sorry it had to be under these circumstances.To answer your question... no. Not all PSP patients suffer cognitive decline but there are many who do... everyone is different. Early on, I was diagnosed with early onset dementia... FTD. I had experienced significant cognitive decline and was referred to a prominent neurologist. During my early visits with this doctor something peaked his interest and he referred me to a neuropthamologist and movement disorders specialist who confirmed a diagnosis of PSP as well as FTD. As you may already know, PSP can progress very quickly or in my case... slow and steady. Make as many wonderful memories as you can now. There may come a time when she will not know you and that's okay, because you know who she is and that will not change.

[Marie_14]

My husband was told he had PSP with signs of MSA. That was in December 2015. In January 2016 he was told the same. Then I realised we hadn't been given another appointment. I rang to find out when the next one would be. I was told not until December! He was going downhill rapidly and I told the Secretary that. They did nothing! So he waited and by then had to go to see the Neurologist on a stretcher. He looked shocked when he saw him and said he thought it was MSA. Saw another Neurologist in January he said he agreed with his colleague and it was probably MSA. He died the following month. That was in February this year.

The truth is they make best guesses? My husband never had a brain scan for this until November 2015 and nothing showed. I had actually totally forgotten about that scan until I was typing. It was the only one he had.

So yes it can progress very fast. As for lack of interest in things that too is a sign of PSP. I actually think the first diagnosis was correct and he had both. Sorry but I don't know enough about FTD but Daddyt gave you some information. He has been on this site a long time before I joined. A good man who has written about the life of a patient with this awful condition.

You need to grasp at whatever moments you have left. Sadly she is locked in her body. If you can talk to her and show her photographs of her past with you? She is so young too. I am so shocked at how many people get this in their 50's or even before.

There appears to be a link between MSA and a head injury when a person is younger. I don't think this is proven but certainly it appears a lot of people have had a head injury when younger. Wonder if this applies to PSP too?

Take care of her as she needs you. Tell her you love her even if you get no response.

Marie

[rriddle]

Scott,

Sorry about your wife. No such thing as PSP/FTD at least from a pathology perspective HOWEVER PSP is considered a movement subtype of FTD. My father's PSP (confirmed through brain donation) also had many FTD-like aspects. The only real difference in treatment is that FTDers should not take Alzheimer's meds whereas these meds don't have much benefit in PSP.

Hang in there,

Robin