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Amylynne

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PALS
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Hampstead
Hi,

My mom was diagnosed with PLS a few years ago and we recently started sharing a home so we could be there for each other a little better.

The main symptoms she has are difficulty walking and balancing. She uses a cane and finds ramps, curbs and grass especially difficult. Her voice is sometimes raspy and she does have a lot of trouble controlling crying. By the way, she's been on Lexapro for 4 years and wants to change because it makes her feel totally shut down emotionally. Do you guys have any suggestions for a replacement?

The main reason I'm writing is in recent months she is having difficulty with words. Not slurring, but say she wants to say or write the word "message", another "m" word will pop out instead, like "menu". Or say she wants to write "loaf" but "love" pops out, or instead of "good" she writes "got". It is more noticable in her writing, because she doesn't catch it as easily. During speech she is more likely notice she did it right away.
Her neurologist feels it is part of her PLS, but I haven't seen this mentioned anywhere, and was wondering if you guys have had or seen this difficulty too.
 

Al

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Hi Amylynne. Can I ask how old your mom is? While it is not well researched yet there is some thoughts that a type of dementia can be associated with ALS. I have not heard of this in relation to PLS but it may be a possibility. Welcome to the forum and we are sorry about your mom. Ask any questions you have and we'll try to help.
AL.
 

midwestgirl

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Loved one DX
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If you go to the top and click on search and type in "cognitive" there is a thread that talks about dementia in ALS, in particular frontotemporal dementia. The thread is just called, "Cognitive problems in ALS." It also appears that about one third of ALS patients may develope thinking problems. Much more than originally thought.
 

Amylynne

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PALS
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Al said:
Hi Amylynne. Can I ask how old your mom is? While it is not well researched yet there is some thoughts that a type of dementia can be associated with ALS. I have not heard of this in relation to PLS but it may be a possibility. Welcome to the forum and we are sorry about your mom. Ask any questions you have and we'll try to help.
AL.


Thanks for writing AL. My Mom is 76. It doesn't appear to be Dementia. I have some familiarity with that, and her neurologist has also ruled out Alzheimers as well. I have seen a few notes with ALS, but none that describe this type of thing. I'll have to search cognitive as given in the other suggestion I got.

Thanks for your support!
 

Amylynne

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Joined
Apr 24, 2007
Messages
4
Reason
PALS
Country
US
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NH
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Hampstead
midwestgirl said:
If you go to the top and click on search and type in "cognitive" there is a thread that talks about dementia in ALS, in particular frontotemporal dementia. The thread is just called, "Cognitive problems in ALS." It also appears that about one third of ALS patients may develope thinking problems. Much more than originally thought.


Thanks! There is a lot of information on there that I'll have to check out. Although, I'm aware that there is a possibility PLS can develop into ALS at this time they don't think it will. She has had a very slow progression and even had long periods of time where she has reached plateaus over the last 6 years. I was petrified when we found out my Dad had cancer in 2004, that she would progress rapidly, but she did unbelievably well through all of that and when he passed away in 2005 after 52 years of marriage.

She was first diagnosed in 2001, but we now think she had some balance and emotional symptoms even before that. Her first out of the blue fall was back in 1989. Then about ten years later she began getting very overwhelmed and crying. In the fall of 2001, her balance, vertigo and additional symptoms got so bad it became apparent something was seriously going on and eventually they came to this diagnosis, but it was definitely not easy for the doctors to figure out.

Today, she is very wobbly and uses a cane, but she does manage ok. She has had a few falls and there have been several times when I have caught her. Her speech and swallowing are ok, but she forgets what she is going to say pretty often. All in all, we are very blessed at the moment.

Anyway, thanks for the tip on where to look for more info. I really appreciate your help. I guess I got off on a different subject. I'm trying to count our blessings and convince myself not to worry about ALS. :?
 

Peg B

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Nov 5, 2006
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PALS
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10/2006
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US
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Michigan
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Flint
Hi Amylynne

Hi Amylynne,

Is there any chance your mom may have had a mini stroke. With my girlfriend's mom this "misnomia," picking the wrong word and saying it even though you know what you want to say, was the major outcome of her stoke. Also it is not uncommom for any of us ALS or not to do it sometimes. Just my 2 cents. Peg
 
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