Re: Life expectancy

[Guest guest]

Sally and All,

My name is Debbie Curtis from Iowa, a long timer here, and I have to agree

with you on the longevity of LBD. We too have been living with this decease for

a very long time. With us the LBD had taken sooo much from my dad at an early

stage of LBD, that it seems like an eternity of living with LBD. There is no

time line with this decease. My Dad retired at the age of 64. As we look back

at his behavior before retirement we now see that LBD entered his life long

before. How long? Who knows. He would talk to my Mom via phone as he was a truck

driver and would express his fears of getting lost in finding locations he

delivered cars to for years. Small things started like this and progressed at a

rapid speed. Like your father, my dad had surgery and came out of it a changed

man. He is now 72 has been in a nursing home 4 years this July. He has been

wheel chair bound for those 4 years unable to feed himself and still has all the

symptoms as folks who are just now being diagnosed with LBD. He has been up

and down sooo many times through out this decease that I like to refer it to

the new comers that you can compare it to the WORLDS LARGEST, LONGEST, Fast then

Slowest rollercoaster man ever made. Some days or hours you can be making the

longest up hill trip to a gusher of a ride back down. Then a big turn to the

right and a small incline back up only to go way back down again. Two weeks

ago my dad was down to 92 lb. and has started back up to 94 lb. He is here some

times but less and less as time progresses. The good minutes he gets are few

and far between. So when folks tell you to enjoy the good times, cherish it.

Debbie Curtis (Iowa)

[Guest guest]

Debbie,

I understand your situation and give you big hugs!! This rollercoaster has a

stopping point and as it draws near all our fears grow. I will pray for you

to have the strength and the fortitude that you will need.

M

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>To: LBDcaregivers

>Subject: Re: Life expectancy

>Date: Fri, 14 May 2004 10:03:17 EDT

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>

>Sally and All,

>

>My name is Debbie Curtis from Iowa, a long timer here, and I have to agree

>with you on the longevity of LBD. We too have been living with this decease

>for

>a very long time. With us the LBD had taken sooo much from my dad at an

>early

>stage of LBD, that it seems like an eternity of living with LBD. There is

>no

>time line with this decease. My Dad retired at the age of 64. As we look

>back

>at his behavior before retirement we now see that LBD entered his life long

>before. How long? Who knows. He would talk to my Mom via phone as he was a

>truck

>driver and would express his fears of getting lost in finding locations he

>delivered cars to for years. Small things started like this and progressed

>at a

>rapid speed. Like your father, my dad had surgery and came out of it a

>changed

>man. He is now 72 has been in a nursing home 4 years this July. He has been

>wheel chair bound for those 4 years unable to feed himself and still has

>all the

>symptoms as folks who are just now being diagnosed with LBD. He has been up

>and down sooo many times through out this decease that I like to refer it

>to

>the new comers that you can compare it to the WORLDS LARGEST, LONGEST, Fast

>then

>Slowest rollercoaster man ever made. Some days or hours you can be making

>the

>longest up hill trip to a gusher of a ride back down. Then a big turn to

>the

>right and a small incline back up only to go way back down again. Two weeks

>ago my dad was down to 92 lb. and has started back up to 94 lb. He is here

>some

>times but less and less as time progresses. The good minutes he gets are

>few

>and far between. So when folks tell you to enjoy the good times, cherish

>it.

>

>Debbie Curtis (Iowa)

>

>

>

[Guest guest]

My mothers doctor said 5-7 years also. We had almost 2 and we are sure that

her sypmtoms started about 6 years before that. So the estimates were right.

It is just that so many times the sypmtoms are so sutle that we just chalk

them up to their aging. I think this disease has opened my eyes and I hope

that I can guide others so that they adn their love ones will have better

life.

M

>

>Reply-To: LBDcaregivers

>To: <LBDcaregivers >

>Subject: Life expectancy

>Date: Fri, 14 May 2004 10:27:17 +0100

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>

>Hi all

>So far as I know and from all I have read I consider the life expectancy to

>be between 5-7 years. BUT ... with Lewy there are always several buts! It

>depends on other factors too.

>Some folks have had Parkinson's for several years before Lewy Body is

>diagnosed as running parallel - so it feels as if the illness has gone on

>for decades!

>My dad was misdiagnosed with Parkinson's at first so it wasn't until late

>on that we got a diagnosis of LBD. As a family we have all tried to think

>back and evaluate when this ghastly disease started and I think we all

>agree that we collectively 'missed' or 'misinterpreted' the symptoms for at

>least 3 years - so in total I think LBD was stalking us for around 10

>years!

>It started slowly and was sinister in disguise. We put it down to age,

>grumpiness due to a painful back problem, physical damage due to overwork

>down in the coal mines. He was forgetful, got irritated and unreasonable,

>complained of pains in head, neck and left leg. Left leg muscle wasting

>away. Stumbling and tripping over a lot. Forgetting words and loosing

>thread of conversation mid-sentence. He also had a very slight 'twitch' or

>'tremor' in his neck. This was thought to be connected to major back

>surgery. His overall condition fluctuated - some times he was much better.

>He also had huge problems with sleep disturbance - he thrashed about all

>night and had bouts of chronic fatigue. He was only in his late 50's but he

>had worked so hard all his life, he was aging fast.

>THEN he had more major back surgery. He reacted very badly to the

>anaesthetic BUT AT THAT TIME WE NEVER THOUGHT IT COULD BE DAMAGING HIM AND

>MAKING LBD WORSE! We were still years off an LBD diagnosis.

>The decline speeded up. The tremor got worse. The irrational, confused,

>agitated mood swings got worse as did his spatial awareness. His sleep

>pattern got more erratic. The pains in his head, neck and leg became

>severe.

>Eventually he was assessed for PD. He didn't meet the criteria in full.

>He had some 'PD TYPE' symptoms but not full blown PD.

>Eventually LBD was suggested - but only after we'd lived with the

>increasingly worsening symptoms for at least 5 years.

>The final pointer that convinced the 'experts' we had LBD was the sudden

>onset of terrifying, realistic and recurring hallucinations.

>All this took time .... and so quantifying life expectancy becomes quite

>impossible. I think 5-7 years is a good guide but only an outside guide.

>LBD will do what it wants, how it wants. It's the 'ultimate bastard' in my

>opinion!

>Just take one day as it comes. Keep a journal, a note book, a diary of

>observations to help you remember what happens when - this is a godsend

>when you have medic meetings.

>Make the most of the 'good' days!

>Love to all

>Sally x

>

>

>