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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 04-23-2008, 07:23 AM   #1
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karen 126 HB User
bulbar onset progression

Hi
can anyone tell me the typical prognosis for a person diagnosed with bulbar onset als? My mother(69 yrs. old) was first diagnosed in Dec. of 2007. At that time ,she could talk fairly clearly and walk pretty well, although slower. Now, 4 months later, her speech is very garbled, she is having difficulty walking even with a cane, and continues to lose weight because of swallowing difficulties. She does not want to listen to what her doctor tells her to do because I don't think that she has fully accepted the fact that she has als. I want to help, but she doesn't want to accept the help because then she would have to admit that she has this disease. Any advice would be very helpful.

 
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Old 04-25-2008, 07:16 AM   #2
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tmarie907 HB User
Re: bulbar onset progression

Hi Karen,

I am so sorry to hear about your mom. My mom died from bulbar ALS in October, 2005. She was 70. She was diagnosed in Spring 2003. This is a sad long haul and I can tell you my mom's progression, but I know each person goes through this differently.

My mom was diagnosed in spring 2003 (age 68).

We moved her out of her house to an apartment closer to her kids and the hospital (October 2003).

Mom had a feeding tube put in early summer 2004 (shortly thereafter she could not swollow at all).

Mom fell in October 2004 and moved in with me at that time. Her balance changed greatly as her muscles weakened.

Mom fell a couple more times at my house and we decided to move her to an assisted living facility in February 2005.

In July 2005 we moved her to hospice care where she stayed until she died We moved her here when she lost her bowel control and kept falling and needed a wheel chair full time.

I know each person deals with this differently. Acceptance is very individual. My mom was extremely religious. Her faith gave her much strength.

One thing the doctors say is family needs to stay one step ahead of this terrible disease. But if your mom doesn't want to do things, that makes it more difficult. My mom did not want a breathing machine as her lungs weakened. That was the first choice she made that was very difficult for us kids.

We had wonderful support from the hospital who was linked closely with our local ALS chapter. If there is one in your area, I highly recommend looking into that. They are there for the families as well as the patients.

If I can help you any further, just ask, I would like to try. Again, I am so sorry. But please spend as much time with your mom as you can. Even though she may not be able to speak soon, she can still hear. My mom was able to write things until the very end. I also made her some flash cards which helped her as well.

Please take care,

Terry

 
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Old 04-28-2008, 12:06 PM   #3
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karen 126 HB User
Re: bulbar onset progression

Hi Terry,
Thank you so much for your reply. My mother sees a doctor at the Als clinic at Froedert Hospital in Milwaukee from time to time, but we live about 150 miles north, so distance is a problem for us. Did you have any hospice services for your mom at home before she went to a hospice facility? I'm so sorry about your mother and mine.

 
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Old 04-29-2008, 07:24 AM   #4
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tmarie907 HB User
Re: bulbar onset progression

That is where my mom went. She saw Dr. Barkhaus there. Lori is in charge of ALS patient services, I think. I think she travels around the state as well. She is wonderful. She has so much information available to you and she is so available..just to talk to.
I did not do hospice at my home because we had a stair issue. Mom could not climb the stairs very easily and her legs were continually getting weaker. We were always afraid she would fall. We also live in an older home, which made the idea of a wheel chair more difficult. She actually went into an assisted living facility before the hospice. It's so difficult going through the thought process of what you can do to help your mom because the changes are so fast. If we would have made major changes in our home, she would not have used them much as she went into hospice five months later.
I wish you well and please ask me anything you like. I will help if I can.
Take Care. You and your mom are in my prayers.
Terry

 
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Old 12-05-2011, 11:13 PM   #5
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muggins HB User
Unhappy Re: bulbar onset progression

Quote:
Originally Posted by karen 126 View Post
Hi
can anyone tell me the typical prognosis for a person diagnosed with bulbar onset als? My mother(69 yrs. old) was first diagnosed in Dec. of 2007. At that time ,she could talk fairly clearly and walk pretty well, although slower. Now, 4 months later, her speech is very garbled, she is having difficulty walking even with a cane, and continues to lose weight because of swallowing difficulties. She does not want to listen to what her doctor tells her to do because I don't think that she has fully accepted the fact that she has als. I want to help, but she doesn't want to accept the help because then she would have to admit that she has this disease. Any advice would be very helpful.
I am 69 and just diagnosed with Bulbar als.... I am and so is my whole family reserching diet concerns, as well as vitamins, minerals and ways to detoxify the body. The doctors are of no help. thanks god for friends andmy son

 
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Old 12-10-2011, 09:23 PM   #6
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IAAMM88 HB User
Re: bulbar onset progression

Quote:
Originally Posted by muggins View Post
I am 69 and just diagnosed with Bulbar als.... I am and so is my whole family reserching diet concerns, as well as vitamins, minerals and ways to detoxify the body. The doctors are of no help. thanks god for friends andmy son
Hi muggins, what is your vitamin regimen for this if you don't mind my asking?

 
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