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Ecowarrior

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My husband just recently signed up and asked a few questions he had. My father who is 64 was recently diagnosed with Bulbar Als. This was very devastating to all of us. I am so worried what to expect as time goes on. He seems to be doing okay right now, his speech is his most noticeable symptom. He has admitted that he has been waking up the last six months with tingling and numbness in his arms. The other day he was very dizzy. It is just going to be so hard to watch this disease take over his body. My dad is the rock of our family. My parents are doing a lot of the things they have read in the book Eric is winning. Has anyone been able to slow down the progression of this disease? How fast does this disease progress? Since this disease started with his speech I am concerned my dad will loose his ability to swallow soon.
Another question I am curious about my dad was in a car accident in late September he was alright the truck rolled a few times and he had a small gash on the top of his head. About a month and half later is when we started to notice he was having slurred speech. I recently typed in head trauma to see what I could find about 100 different things appeared under this heading, one thing that caught my eye was Bulbar Palsy. I was confused what I read about Bulbar Palsy. Has anyone heard of this? Is this the same as Bulbar ALs? I am just so curious if the accident he was in could have brought this on.
I know I asked a lot of questions I could sit here all night asking questions. I think this sight is great, I enjoy reading every-one's experiences. If anyone has any answers to my questions or could share their story I would love to hear them. Thank-you for taking your time to read this.
Take care.
Holly
 

Al

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Hi Holly. I'm sorry about your dad. I'll try to answer what I can.No One knows if they slow down the disease with anything they do> We all progress differently. I've known people with Bulbar ALS that were gone in 6 months and others are around 4 and 5 years later. No one knows.
As for swallowing your dad will have to decide if he wants a PEG or feeding tube. When choking and losing weight become an issue a decision should have already been made. Surprisingly a lot of us with ALS have had some type of head trauma and some take cholesterol lowering drugs. Coincidence? No one knows yet.
Bulbar Palsy is a form of ALS affecting about 25 per cent of the people and usually presents with trouble chewing and swallowing.
I have limb onset and I did get the tingling and numbness in my arms at night but that was at least a year or two before I was diagnosed in Oct. 2003
We're here to help so don't be afraid to ask questions. Hope I haven't freaked you out with my answers but there is no point in not giving you the goods as I know them.
Hope this helps and ask anything you need. Take care. AL.
 

Ecowarrior

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Al, Thanks for the info. It was a help to hear the truth even though it hurts. On a good note we have talked my dad into going on a trip !
 

marlo

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Feb 20, 2006
Messages
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Hello Holly,

Sorry to hear about your father. I was diagnosed almost a year ago with Bulbar and so far i still have my motor skills. However, i do have trouble with my voice and breathing. The funny part is ,, sometimes it seems to be alright,, only to come back a few days later with a vengance. I too had head trauma many years ago,, well actually it was body trauma,,lol,, you see i had a snowmobile accident. I get dizzy from time to time,, but i thought maybe it was just me. I get many headaches,, and then my balance is off so i tend to walk into things.
Well i do hope this at least lets you know your not out there alone. Good luck,, with this thing.
Love and Prayers
Marlo
 

davis06

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Country
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Ga.
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Gainesville
hello Holly

I also have bulbar als and was in car accident which resulted in shoulder surgery

in dec. 2004 in June 2005 I started getting the slurred speech. Was dig with als
in april 2006. Now have the breathing problems and about have lost my voice.



Good luck Daviso6
 

Barbie4

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I didn't know that

I didn't know that alot of AlS patients have had some sort of Trauma. My friend Gail was in a car accident years ago that hurt here back and neck.

I would be interested in hearing how many others here have had an accident of some sort and how many haven't. Have you had an accident Al?

Let me know,

Barb :)
 

dana

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Mar 17, 2005
Messages
216
This topic came up a while back on the old forum. It was amazing how many people had head injuries not too long before they started getting ALS symptoms. My dad was one who fell off a ladder and blacked out for a little bit...who really knows for how long because he was by himself. Some might say that he could have fallen off the ladder because he was starting to get weak and/or have loss of balance due to ALS, but my dad does not have the limb onset kind. His is bulbar and he is still completely mobile for the time being. His bulbar symptoms (speach) started several months after the fall. Interesting....
Dana
 

Al

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I had 2 concussions. One in about 1974 from a diving incident and a severe one in 1977 from a fall on the ice. Some others on the forum have had similar incidents.
 
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Barbie4

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Hmmmmm

Hmmmm, that is interesting. I wonder if this has something to do with ALS or could be the trigger they talk about.
Gail's accident was over 12 years ago though, not recent.

I will try to look up the old posts.

thanks

Barb :)
P.S. It is way too hot and humid here in Ontario lately. I can't wait for winter! ha ha haha ahahahahaahahah
 

Al

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Jump in the lake Barb. Or get some air conditioning. I had my brother here and 2 friends building a bridge from my lift to the sidewalk and it was 88 in the shade. I thought I was going to die from heat stroke and I was just the gopher and not even much of that.
 

Barbie4

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Beer Gopher I bet.

Believe me, I have the air conditioning on and have already had my first thermostat fight of the summer with my other half. He keeps threatening me that the air conditioner is going to freeze up on me. I tell him, that he should be happy that he has such a hot wife! ha ha.

I think we just hijacked this thread. Sorry. :)
:oops:

Barb :)
 

Al

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Well seeing as I have met you and the others haven't ,thinking about you being hot is ok by me. I thought you were kind of cute when we met. Lee was with me so I was trying not to think of you as hot. But it was hard.
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
Hello Guys,

I know theres alot of us on here that have had head trauma prior to getting ALS. I however, hope we are wrong. Several years ago my son was in a very bad accident where his body was used as a ramrod. His head made a bowl sized indentation into the cab of a pickup truck (the metal around the back window). It's a miracle that he is alive and well so far. If we could flash forward 20 years ,, we may know the answer to that question. I have told my daughters about our suspicions ,, so they can watch for any symptoms he may develop as time goes on. Right now he is serving in the AirForce,, stationed in Japan. I think if he developes any symptoms in there ,, they'll have him checked out.
Well good luck to you all and have a great day.

Love and Prayers
Marlo
 

munozg

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Apr 29, 2007
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Loved one DX
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Vic
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Melbourne
Head Trauma

Hi Everyone,
this is my first post, hopefully works out OK.
My dad (70) was diagnosed with MND a few days ago.
He is a strong but reasonably skinny person so was difficult to
know if he was loosing weight for a while or not, he is quite light now.
He had a huge fall from the shed roof and concussion in mid 2004. Then
another smaller fall with head hurt about 12 months later.
He has had speech slowing for most of that time, if not years before.
The slow speech and swallowing difficulties were intermittent, happening
when tired in the evenings mostly, or after a glass of wine. So I suppose he has bulbar?
An MRI also showed an aneurism, which was what we thought was going to be the diagnosis, but they said not to worry about that now.
I remember when dad had the huge fall from the roof it was a week before he and
mum were to go on their trip of a lifetime to europe. Dad being the determined
fellow he is, still went, scratched and bruised.

Love to everyone, I have really enjoyed reading the forum.
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
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Country
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State
On
City
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Hi munozg and welcome. We have a few other members from down under. It's hard to say whether your dad has bulbar MND with the information that you have given. What has his Neuro said it is?
AL.
 
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