Status
Not open for further replies.

wewillbeatthis

Distinguished member
Joined
Aug 10, 2005
Messages
185
Hello ALS family,

I posted this las night but for some reason it must not have gone through.

In any case I hope everyone is doing well?

I would like to ask a few questions:

1. Does the cold weather take a part in making certain symptons worse in ALS patients?

Dad walks worse in the cold especially when it is snowing or raining.....

Dad's voice also tends to be differernt on cold days... At some points I believe I hear it to be horse, a little slow, and or certain letters slurred....

My family thinks it is me looking for things and they don't see a difference.

2. Does stress/being nervous take a part in making certain symptons worse in ALS patients?

Dad walks worse when he is nervous/stressed and must hold onto someone if he is around a great deal of people cause then all of sudden he fears falling.

Dad also tends to slur a bit when people are around him that he is not comfortable with...

Any response to this or experience would be much appreciated to me and my dad...

I hope that each and everyone of you and your families have a wonderful Thanksgiving...

Love Jen :wink:
 
Hi Jen,
I can only speak to the speech part of your questions. Cold definately does make a difference in my speech and mouth. When it is cold, my jaws get very tight and clenched. I also found, when I could still talk enough to make myself understood, that cold would make it harder for my tongue to "get around words", thus I slurred more. This is probably what happens to your Dad.
Stress can also do so many things, and it is normal I think for us to be selfconscious in crowds of people.
Hope you are doing OK. We Canadians in the frozen north had our Thanksgiving earlier, but Happy Thanksgiving to you and your family. Every time together is precious.
Love to you
Leah
 
Hi Jen,
I find with my Mom that she also gets a little stressed around crowds, so she usually tries to just stay seated and not walk around. I think it has to do with a fear of falling, and people looking at her while she is walking is hard on her( her walking is very poor), as she use to be very proud of how striaght she use to stand, she was always on my case for slouching! I think she just feels more normal, for lack of a better word, when people aren't watching her struggle. This type of situation can be very stressful on her, and stress does make my mothers ALS get worse. Don't know if I helped or not, but I hope so. Take care.

God's blessings to you and your family on Thanksgiving.
 
Hi everyone. I find that when I get stressed my fasciculations get worse. My hands just about seize up in the cold. My walking is a bit off as well when walking in the cold. I'm not showing any bulbar symptoms so can't comment on that other than to say that if the other parts stiffen up in the cold it makes sense that the mouth and throat muscles would be stiff as well.
 
Thanks for all of your replies....

I agree that when dad is around a crowd it is as if he is another person. It is his pride.... I just wish I knew how to get him over this. Can anyone make any suggestions?

His PT had him try on an AFO and they all indicated how wonderful he walked with them on. He of course is not ready to make this step to wearing them.... He uses this ugly cane so my brother and myself and everyone else in the family are going to get him different types of canes that go with his different styles. I was also told that perhpas he would like a walking stick anyone have any suggestions on this?

Dad put in a banister today at moms house my parents are divorced. I know he did this cause he is more comfortable on steps if a banister is present. This will make him feel better about getting around the house and going up and down the steps.

You know he also is nervous about walking in the dark anyone have this issue as well?
Jen
 
My Mom has a cane and recently got a walker. At first she didn't like her cane, and it really is not bad looking for a cane. Whatever you do, make sure you get a pick on his cane or walking stick for ice. My mom just had one put on because she almost fell outside my front door. The walker was a big step because she didn't think she needed it yet, but discovered how much more secure she felt walking any distance, she is also able to sit down if she feels her legs are getting weak. I have also come to notice that it doesn't seem to matter what assistive devices they get along the way, they never like them or think they need them at first ( I can't blame them ), but adapt to them quickly when they discover they are necessity and make life easier. I haven't been a part of this forum very long, but unfortunately I am having to learn very quickly( fast progression )everything that comes along with ALS. I am glad to offer ideas or support in any way I can. Hope this helps!
 
Status
Not open for further replies.
Back
Top