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 Old Introduction 
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Joined: Wed Nov 19, 2008 5:57 pm
Posts: 14
Location: UK
Post Old Introduction
I posted this introduction 3 years ago and wanted to do a follow-up so here it us again for those who don’t know me.

“Reg is now 87 years old and was officially diagnosed about 3 years ago, though he had lots of symptoms before that which nobody seemed to know what they were. It€™s very difficult to know when the onset was, for about 20 years he has suffered with loss of balance, sense of smell and taste, together with weird dreams and disturbed sleep. Around 1996 he developed tinitus which made him extremely agitated and he would try to escape the house at night to throw himself in the river. My mum found a suicide note in his dressing-gown pocket which really alarmed us. The doctor put him on anti-depressants but he was still acting strangely. He was making a lot of saliva and was constantly barging passed people to go urgently to the toilet. In 2001 he started to get lost whilst driving and seemingly having blank€ moments. On one occasion he reversed up the drive and across the lawn, demolishing a wall. On another, he shot across the road and drove head long into oncoming traffic, injurying several people. Afterwards he had no recall of any of this. At this stage the police took his licence away and a lengthy court case ensued. His shuffling gait prompted the doctor to diagnose Parkinsons Disease in 2005 but he had a bad reaction to the drug prescribed. Eventually, in 2006 he was diagnosed with LBD by the neurology consultant at Wexham Park Hospital, Slough, UK. A few months later we noticed his breathing become erratic and his body seemed bloated. He was taken into hospital and when they drained off the fluid he had a mild heart attack. He was then diagnosed with left ventrical heart failure. On his return home he had a fall and broke his hip. Back in Wexham Park Hospital they refused to operate so soon after a heart attack as he could suffer another one under anasthetic and die. Reg was so distressed and screaming to have something done. We persuaded the medical team to go ahead with pinning it using an epidural but they scared the life out of us by saying he would only have a 20% chance of survival. It was the best day of our lives when he came through it, but in his head he had been to a morgue! That was followed by 6 weeks in a dreary nursing home for rehabilitation. Since then his condition has gradually got worse though he is bearing up well. He is on various drugs for his heart condition, as well as Aricept and Seroquel. Up until April this year we were taking him out and about in a wheelchair but he recently had a fall indoors and has taken to his bed where he seems quite content, except during the night when he has the most awful hallucinations. The physio is working on him to get up and make a few steps to the commode - what a help that will be! He is still eating, though has lost about 30lbs during the last year. My mum is being so strong and wants to look after him at home until the end. With my help and the excellent help from social services, I‘€™m hoping it will be possible. Reg has retained his sense of humour and in the moments when he is ‘with us’€ he smiles and jokes and tells us he loves us. What a crazy, heartbreaking roller coaster of a journey we are all going through.”


Its been a long time since I did my introduction so I thought I would give you an update. We have managed to keep dad at home but since last Christmas his downturn has been spiralling. He can no longer get out of bed and only speaks in a whisper. He recently had shingles which got infected and now has to wear a dressing permanently on his back. However, we are keeping him comfortable. Dad recently celebrated his 90th birthday and I wanted to share this picture of my parents on their Diamond Wedding Day last week. Amazingly they received a card from the Queen!

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Thu Jul 26, 2012 10:52 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Old Introduction
How wonderful!!! Thank you so much for the update! The pictures are beautiful! :P

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jul 26, 2012 12:21 pm
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Joined: Fri Mar 30, 2012 7:29 pm
Posts: 10
Post Re: Old Introduction
Calabona,

Thanks so much for updating the community. You and your family have been through a difficult journey to be sure. It sounds as though Reg is quite the "fighter" and has been strong through his ordeal. You and your family are to be commended on the strength you have shown as well. It sounds as though the "royal" treatment was definitely given on the anniversary and how exciting to get a card from the Queen!

We are thinking about you and wish Reg, you and your family peace and comfort each day. Keep us posted, and we will send positive thoughts your way.

Kathleen

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Kathleen B.
LBDA Forum - Welcome Moderator Volunteer
http://www.lbda.org


Thu Jul 26, 2012 12:26 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 187
Location: Portland, Or
Post Re: Old Introduction
Thanks so much for the update and for sharing your wonderful pictures and story with us!!
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Jul 26, 2012 3:10 pm
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Joined: Wed Nov 19, 2008 5:57 pm
Posts: 14
Location: UK
Post Re: Old Introduction
Thank you so much for your replies. I wanted to post something positive and in turn you have uplifted me. Dad certainly is a fighter, a war veteran stationed in Pensacola, Florida, then Picton, Ontario during the second world war. He has been the best dad and husband despite having this awful disease inflicted on him for a very long time. His quality of life is awful and the medical team have stopped his medication (except a low dose of Seroquel) but my lovely dad keeps on going.

It’s good to know you will be there guiding me and my family through the last stages of the journey. Thank you x


Thu Jul 26, 2012 3:20 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Old Introduction
Thanks for the update and for the wonderful pictures ! That cake looked so yummy !!

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Irene Selak


Thu Jul 26, 2012 4:54 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Old Introduction
thats a beautiful photo, he looks like such a sweet man, and I'm sure he's proud of all you have done for him,
thanks for sharing,
Ger x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Jul 27, 2012 9:32 am
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 88
Location: California
Post Re: Old Introduction
Dear Calabona ~ Your father's progression sounds so much like my husband's. His mother recently passed 20 days before her 90th birthday. I believe she had LBD although dementia was her only diagnosis.
Many blessings to you and your family.
Roxanne

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My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease...


Sat Sep 08, 2012 3:07 pm
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Joined: Wed Nov 19, 2008 5:57 pm
Posts: 14
Location: UK
Post Re: Old Introduction
Dear Roxanne, I am so sorry your poor husband has this hateful disease but hopefully you will have many more years with him. When I look back I believe my dad had been ill all my life and I think it might have stemmed from a car accident he had in his twenties, where he was in hospital for a long time with concussion. I am only guessing, we all ask ourselves why anyone gets LBD. If only we knew! Sadly my dad passed away 27 July and it is very difficult coming to terms with it, mainly because of the change of our circumstances after years of care-giving. We take satisfaction in the fact he was always with the people who really loved him and got the best possible care anyone could have. He became so sweet in the last few months and said some lovely things to me which I will hold and treasure all my life. I miss him terribly and will cry forever that he suffered so much; it is a consolation that he is at peace now.

I wish you strength in your journey with your husband and to all the other people on this site looking after their love ones. God Bless you all.


Fri Sep 14, 2012 8:52 am
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 88
Location: California
Post Re: Old Introduction
Dear Calabona ~ I placed my husband in a board and care home two weeks ago. I was just not able to provide the care he needed... It is such a strange dementia. His body was becoming more and more frozen [the Parkinsonian symptom]. I was exhausted from having caregivers in and out of the house every morning and every night. His decline has been going for about 15 years now, and it took several false starts and a long time to get the correct diagnosis. I have turned myself inside out trying to help him and find answers... Although there are definite cognitive impairments, most of his memory and language are still good...

As you know, it is heart-wrenching for everyone, but I am finally learning that I must LET GO and Let God.

_________________
My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease...


Last edited by FiatLux on Tue Oct 16, 2012 10:16 am, edited 1 time in total.



Mon Oct 15, 2012 5:31 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Old Introduction
Dear Calabona, Thank you so very much for sharing your story and the loving pictures. I sit here weeping for all of you and the price you all had to pay for this dreaded disease. That being said I hope you do take comfort in the way you and your mother showed such love and care for your father. My husband was diagnosed in April 2012 but it probably started many years before. Right now he is doing somewhat better with Seroquel, Sinement and Exelon. Of course we all know how quickly their condition can change. You have touched my heart and I will be thinking of you in the days ahead. You and your mother give me strength.

Susieg


Mon Oct 15, 2012 7:32 pm
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