Dad With Picks Disease

EmmaThrace

Account Closed
Apr 17, 2013
10
0
London
Hi all,

I have never thought to post on here but seeing everyone's inspiring threads I thought I would share my story.
I am 21 years old and my father is 48 and has a rare form of dementia...pretty far gone now and was diagnosed around five years ago.
I still find it hard to deal with some days but somehow, I'm sure you can all understand, we find a way to carry on.

Please read my blog if you have the time..I originally wrote it to raise awareness of the rare form.

Thanks again guys! My hearts go out to you all.

Emma
xxxxxxx
 

Sue J

Registered User
Dec 9, 2009
8,032
0
Hi Emma

Sorry to read about your Dad's illness. What an amazing young daughter he has.
Can you put the link to your blog?

Best wishes
Sue
 

jersey93

Registered User
May 30, 2013
1
0
London/ Bristol
Dad with Pick's disease

Hi Emma,

My Dad was diagnosed with Pick's disease last February, after years of his "symptoms" worsening. He was also tragically diagnosed with bowel cancer in December and passed away March this year.

I am 19 and currently finishing my second year of vet school, if I somehow manage to pass my upcoming exams! I liked what you said: "we find a way to carry on" - I feel exactly the same. Sometimes it's unbearably tough, Pick's is such a heart breaking disease but you keep going despite everything's that happened and is happening. What other choice is there?

If you could point me in the direction of your blog I would really like to read it. I was just wondering about how your Dad was diagnosed five years ago as there is not much awareness of this condition. It was not picked by any of the GPs in our local practice and he was thought to have depression/ going through a mid life crisis rather than anything more. Knowing his behaviour was down to an illness earlier on would have saved my family much anguish and upset.

Wishing you strength and lots of love,

Hannah
xxxxxx
 

EmmaThrace

Account Closed
Apr 17, 2013
10
0
London
blog website

Hi Emma

Sorry to read about your Dad's illness. What an amazing young daughter he has.
Can you put the link to your blog?

Best wishes
Sue

Sorry about the late reply...
my blog is
blessed-are-the-forgetful.blogspot.co.uk
thankyou for your kind words
xxx
 

Somerset1963

Registered User
Mar 30, 2013
9
0
Somerset
Hi Emma an Hannah.
Welcome, and thank you for sharing your blog. I will have a good look at it. I have two children of 19 and 21 who like you also are loosing their Dad to Picks disease.
We have for the past three to four years seen him deteriorate from a normal able father/husband to now needing full time care.
Sadly like we for a long time were made to believe it was due to depression and midlife crisis. I have had GP raise his eyebrows when I asked if my husband could be seen by a psychiatrist who specializes in all dementia. Also due to confidentiality my concern for my husband was very hard to get recognised. Not to mention the idea of marriage guidance and divorse.
As you say if only a diagnosis could be made sooner and we wouldn't have to suffer quite the same due to lack understanding. I know there is no cure but at least now we are able to look back and recognise the typical symptoms.
We need to make people aware how this illness can effect young teenagers when they slowly loose their Mum or Dad and have to take over many adult responsibilities at a very young age.
Best wishes to you both. Xx

I am so pleased to see you having found this forum and make use of it.
 

Maggie42

Registered User
Mar 7, 2011
120
0
East Midlands
Hi,
I can only echo what has been said but wanted to offer my sympathy as well. My husband has many symptoms of frontal dementia although this hasn't shown up on scans. He is now in a nursing home and our 21 yr old son has witnessed a rapid deterioration over his years at university. It must be dreadful when you go back not knowing whether you will be recognised on your return and also he helped care for his dad when at home.
I am glad you have found support on TP I and will give him the link to the blog mentioned so he too can see he is not alone.
Best wishes
maggie
I
 

EmmaThrace

Account Closed
Apr 17, 2013
10
0
London
Hi Emma an Hannah.
Welcome, and thank you for sharing your blog. I will have a good look at it. I have two children of 19 and 21 who like you also are loosing their Dad to Picks disease.
We have for the past three to four years seen him deteriorate from a normal able father/husband to now needing full time care.
Sadly like we for a long time were made to believe it was due to depression and midlife crisis. I have had GP raise his eyebrows when I asked if my husband could be seen by a psychiatrist who specializes in all dementia. Also due to confidentiality my concern for my husband was very hard to get recognised. Not to mention the idea of marriage guidance and divorse.
As you say if only a diagnosis could be made sooner and we wouldn't have to suffer quite the same due to lack understanding. I know there is no cure but at least now we are able to look back and recognise the typical symptoms.
We need to make people aware how this illness can effect young teenagers when they slowly loose their Mum or Dad and have to take over many adult responsibilities at a very young age.
Best wishes to you both. Xx

I am so pleased to see you having found this forum and make use of it.

I cannot tell you what a relief it is to know that there are other people out there and we are not alone in the struggle. Obviously, I would never wish this upon anyone but until now, have never spoken to anyone who can mirror our situation. Thankyou!
 

EmmaThrace

Account Closed
Apr 17, 2013
10
0
London
Hi,
I can only echo what has been said but wanted to offer my sympathy as well. My husband has many symptoms of frontal dementia although this hasn't shown up on scans. He is now in a nursing home and our 21 yr old son has witnessed a rapid deterioration over his years at university. It must be dreadful when you go back not knowing whether you will be recognised on your return and also he helped care for his dad when at home.
I am glad you have found support on TP I and will give him the link to the blog mentioned so he too can see he is not alone.
Best wishes
maggie
I

My heart goes out to anyone dealing with this. Thankyou for sharing my blog and if your son or anyone would like to get in contact with me to talk, I am more than happy to!
 

matts

Registered User
Jun 17, 2013
17
0
The world Needs more people like U

Hi Emma Im so Sorry 4 your Loss X Im sure your Dad would have been very Proud To have Such an Exceptional daughter. I two have Daughters that are very young and wiv Everything that will happn in the Future will be Extremly tuff for them. I will Remember your Story aswell as your Inspirational Example Of Courage Hope to keep in touch God bless n take Care
 

matts

Registered User
Jun 17, 2013
17
0
Sorry

Sorry i mean Hannah im so Sorry 4 your Loss n Emma your Example of how you are coping is Inspirational as a lot of family member dont n wont except the Diagnoses until the Symptons severe. Plz accept my apologys I cant Even complete a paragraph without Forgetn Names etc or Making Huge Mistakes No how hard I try. Take care n god bless u Both.
 

nikky

Registered User
Dec 5, 2008
15
0
canada
Hi Somerset, i can totally relate to your post, my husband was diagnosed with picks in May this year. He is in the very early stages but my world just fell apart he is 57.(i'm 45) We too were told to get marriage counselling etc but his mum had it and i nursed her too so i stood my ground and demanded he see someone. His behaviour was eratic, aggressive and very sexual not my man at all. I have a daughter that lived with us (19)and it became a very difficult situation....Now that she knows he is ill and has moved into her own place she is rebuilding the close relationship she once had with him.

It is such a rare form of dementia finding out what to expect is very difficult never mind talking to people that have experienced it. So i would appreciate any advice or knowledge you could share. I am trying to keep our farm running and at the moment oh seems to be coping with supervision. he is incapable of managing finances and was giving money away to complete strangers, luckily i found out before he got in that deep we were in trouble, Then in other ways he's perfectly 'normal'. He is now on some medication just to curb some of his behaviours, which seems to have helped and he says he does feel less worried now he is taking them. His boys are still in the uk, not sure how this will affect him later as he does not want to return to the uk now. has anyone got any idea about the time frame i may be looking at before he will have to stop working??? I need to make some sort of plan to keep a roof over our heads and don't know where to start! What am i looking for?? He does tell fibs now and can be a bit secretive and had become quite tactless.

Thanks just for letting me have somewhere to off load xxxx





OTE=Somerset1963;763046]Hi Emma an Hannah.
Welcome, and thank you for sharing your blog. I will have a good look at it. I have two children of 19 and 21 who like you also are loosing their Dad to Picks disease.
We have for the past three to four years seen him deteriorate from a normal able father/husband to now needing full time care.
Sadly like we for a long time were made to believe it was due to depression and midlife crisis. I have had GP raise his eyebrows when I asked if my husband could be seen by a psychiatrist who specializes in all dementia. Also due to confidentiality my concern for my husband was very hard to get recognised. Not to mention the idea of marriage guidance and divorse.
As you say if only a diagnosis could be made sooner and we wouldn't have to suffer quite the same due to lack understanding. I know there is no cure but at least now we are able to look back and recognise the typical symptoms.
We need to make people aware how this illness can effect young teenagers when they slowly loose their Mum or Dad and have to take over many adult responsibilities at a very young age.
Best wishes to you both. Xx

I am so pleased to see you having found this forum and make use of it.[/QUOTE]
 

EmmaThrace

Account Closed
Apr 17, 2013
10
0
London
Hi Somerset, i can totally relate to your post, my husband was diagnosed with picks in May this year. He is in the very early stages but my world just fell apart he is 57.(i'm 45) We too were told to get marriage counselling etc but his mum had it and i nursed her too so i stood my ground and demanded he see someone. His behaviour was eratic, aggressive and very sexual not my man at all. I have a daughter that lived with us (19)and it became a very difficult situation....Now that she knows he is ill and has moved into her own place she is rebuilding the close relationship she once had with him.

It is such a rare form of dementia finding out what to expect is very difficult never mind talking to people that have experienced it. So i would appreciate any advice or knowledge you could share. I am trying to keep our farm running and at the moment oh seems to be coping with supervision. he is incapable of managing finances and was giving money away to complete strangers, luckily i found out before he got in that deep we were in trouble, Then in other ways he's perfectly 'normal'. He is now on some medication just to curb some of his behaviours, which seems to have helped and he says he does feel less worried now he is taking them. His boys are still in the uk, not sure how this will affect him later as he does not want to return to the uk now. has anyone got any idea about the time frame i may be looking at before he will have to stop working??? I need to make some sort of plan to keep a roof over our heads and don't know where to start! What am i looking for?? He does tell fibs now and can be a bit secretive and had become quite tactless.

Thanks just for letting me have somewhere to off load xxxx





OTE=Somerset1963;763046]Hi Emma an Hannah.
Welcome, and thank you for sharing your blog. I will have a good look at it. I have two children of 19 and 21 who like you also are loosing their Dad to Picks disease.
We have for the past three to four years seen him deteriorate from a normal able father/husband to now needing full time care.
Sadly like we for a long time were made to believe it was due to depression and midlife crisis. I have had GP raise his eyebrows when I asked if my husband could be seen by a psychiatrist who specializes in all dementia. Also due to confidentiality my concern for my husband was very hard to get recognised. Not to mention the idea of marriage guidance and divorse.
As you say if only a diagnosis could be made sooner and we wouldn't have to suffer quite the same due to lack understanding. I know there is no cure but at least now we are able to look back and recognise the typical symptoms.
We need to make people aware how this illness can effect young teenagers when they slowly loose their Mum or Dad and have to take over many adult responsibilities at a very young age.
Best wishes to you both. Xx

I am so pleased to see you having found this forum and make use of it.


Hi there thankyou for sharing!

My heart goes out to you.xx
 
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sweetmole

Registered User
Sep 8, 2012
165
0
Dear All
This thread really touched my heart. And though the disease is very sad I'm glad to read the stories if others. Makes me feel less alone.

My mum has this disease and in some respects I feel as if I have lost 10 years of my life to this disease as well. I didn't know what was wrong with her and now that I do I feel some relief.

But she had a fall recently and the pain sets off screaming episodes. Have gone to GP and hospital. Pain killers don't work. But I will soldier on.

Hugs

Me
 

EmmaThrace

Account Closed
Apr 17, 2013
10
0
London
The blog

Hi guys, it's been a while since I posted on here...I have some new blog entries that might interest you.
 
Last edited by a moderator:

argon1

Registered User
Nov 29, 2013
5
0
Hi guys, it's been a while since I posted on here...I have some new blog entries that might interest you.

Hi Emma,

I am 24 and my dad has dementia. I too am in university (I am in grad school now). I have read many of your posts including your most recent ones. Your wisdom and insight and your ability to articulate your thoughts are pretty amazing. I think your blog is fantastic and I too believe a great deal if effort needs to be made to raise awareness of dementia, especially the early onset ones.

I wish your family well, through this especially tough time, your dad is lucky to have such a loving and advicating family. You are an inspiration!

Chris
 
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lovely.trouble

Registered User
Dec 8, 2013
2
0
Hi Emma, I have never posted before. my husband has frontal lobe dementia, hes 45. my daughter is 14. its blown her world apart. I have suggested she joins TP having read your post. I hope that she will get some support to deal with the journey we now have to take. stay strong, and thank you xx