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No rhyme or reason to this disease...


Registered User
Sep 16, 2005
You give them medicine that is supposed to slow the disease's progression but you can't tell if it works because you daren't take them off it but if you did you still wouldn't know because who's to say what speed their individual case of dementia is supposed to progress at?
The doctors said initially that it was alzheimers, but then there was no forgetting, just loss of words and ability to behave like they used to and loss of mobility. The doctors then change their diagnosis to a vague 'well he's got a dementia of some sort'...maybe its fronto temporal damage maybe thats why he's not forgetful....basically they don't know, all they know is they don't know how to fix it and that it seems to be getting worse so they assume it will be terminal...I wish they would just say that instead of pretending that they know whats going on. I feel like saying, its ok, I know you're a doctor and you are supposed to know everything, but I get it, this one has you stumped...
Hows this for the latest weird thing, Dad gets taken out of the home that he was living in for the past few years and now he is at home again (his own home), he's started to walk again, the other day he picked up a biscuit off the table and put it straight to his mouth (something he hasn't done for years) and the big surprise, he's started saying words again. He said Ireland (where he comes from and where him and Mum travelled to whenever they went overseas) when a family member was talking about their overseas travel. He said his carers full name (a two syllables for each name) when he saw her arrive... and he said home when out walking with my mum and promptly turned toward home. This is from a man who hasn't said proper words just made noises for the last year or more.
Its somewhat frustrating as it appears there is still an ability to heal within him, but the doctors just can't help. He's done such a fine job of fighting this disease for so long dammit he deserves for someone to find the answer but its not going to happen in time I know.
Dad your the best damn fighter I've ever known, you make me proud to be your daughter, I wish I could help, instead I will make sure that I like you never ever give up, no matter how bad things seem, because its people like you who make the world a better place, people like you make the world change. They may not find the answer in time for you, but you've made them look again, made them realise there is more to this disease, made them see you as a person, not just an illness.
I know he's just one person, but I believe that every change in this world begins with individuals who refuse to give in despite the lack of hope.
(I know this post doesn't make much sense, I was running from one tangent to another, but thats the joy of posts you can just speak your thoughts eh? ;))

Grannie G

Volunteer Moderator
Apr 3, 2006
Hello Nat.

When I worked with children with language disorders, there was always a hope that other areas of the brain would compensate for the damaged or non-functioning areas.

The belief was to catch them while they were young, to have the best opportunity.

Who knows! Perhaps there are areas of your father`s brain doing the work of the damaged areas.

Whatever it is, I hope it continues.


Registered User
Mar 7, 2004
Hi Nat, good to hear from you.

Nothing now will turn back the clock, and I know how hard you fought for your dear dad to be recognised as 'himself' during the time that he was in care.

Has a wrong diagnosis been made, has the medication helped or not, are things you will never answer, because maybe there is no 'definitive' answer.

Rejoice in the small things (as I am sure you do) that dad now manages, and it would seem that bringing him back home was a positive step for him. Glad that mum is still coping in that respect.

I am so pleased for you, to regain even a little of that special man.......your dad. Such a fighter.

Take care now,


Registered User
Apr 17, 2008
southampton hants
well done you

hello Nat,

No rhyme or reason to this disease, your absolutely right. Like you see in your dad his own abilty to right things, I think my mum will do that. It's early days (I think) with this illness, but already I'm getting to think that the doctors don't really know what's going on here. i do believe though , like your dad, mum will sort things out on her own to a great extent.. I hope this is true for her and I hope it continues to be true for your dad.

Best wishes ,