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taranicole

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Hi...I am new here. I was looking up ALS after finding out my father may have it. His symtpoms began with slurred speech about a year ago. Since then, he has had some muscle weakness, and he is having trouble eating and breathing. I went with him to his neurologist on Monday, and he said after the tests they performed that day (nerve coduction, and something where they put a needle through the tongue), he is 95% sure this is what my Dad has. He wants him to see a Dr. in Miami (where I live- my father is three hrs north). He has an appt Monday with this guy - a neurologist who specializes in ALS.
My question is...is it common for someone to have problems breathing and still be able to walk, etc? I read a little online about how it affects everyone differently...but it just seems so wierd. I dont know. Maybe I am hoping someone will say he doesnt have it. :roll:
He has a pulminary function and barium swallow tests schduled for Tuesday. It seems like these should have been done by now...he has been going through tests for a year. Then again, perhaps he is tired and hasnt followed through the way he should. I dont know....
anyway, any advice anyone can give at this point would be helpful.
Thank you,
Tara
 

Al

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Hi Tara. Sorry to hear about your dad. I too have trouble breathing and still walk and drive. I have touse a Bipap machine at night that forces breaths into my lungs and then shifts to a lower setting to allow me to exhale. My hands are getting weak and my legs but my breathing is what I would say is the worst part on me. Some of the others on here do have trouble with breathing but I don't think they are on a Bipap. Some may be on vents. I know that is not encouraging but you are not alone. Feel free to ask anything you like. This is a pretty good group.
 

TBear

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Hi Tara:
Sorry that you are here. As Al said, it is not uncommon with ALS for people to have problems breathing and talking and still be able to walk. Some patients exhibit the opposite problem. The barium swallow and pulminory function tests will determine how much of his capacity is lost and will be helpful with his treatment although I don't think they are used to diagnose ALS. It's also good to have him go to someone who is familiar with treating ALS. They will likely have good insights into you dad's problems.
If he is positivelydiagnosed with ALS and you have more questions don't be afraid to ask... we usually don't bite.

T.
 

taranicole

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Thank you

Thank you both for your kind words. Today has been such an emotional day (and its only 9 a.m.!)
My Dad comes in tomorrow and he said he is ok with me going on Monday. I feel so bad for him. It is hard b/c he was so active before- able to do so much. Someone told me be careful to leave him his dignity as long as possible....so I have been making an effort to ask him to open jars for me, or handing him the trash to take out even though my gut is screaming to me to just do it for him. When we went to dinner while I was up at Sebastian, his hands were shaking so much, that he couldnt get a bite into his mouth without the food falling off his fork. Is this common? He had just edged his lawn (which i didnt want him to do but didnt say anything b/c he loves his lawn).
I am rambling...thank you for your comments. Al, I am sorry to hear what you are going through. I can't even imagine. Thank you for being so welcoming.
-Tara
 

Granny

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Hi Tara,
Just wanted to say hi, and glad you found this place. If you read Lily's post under General Discussion "Love is the Best Medicine" you will find that you are doing the right thing for your Dad-loving him. The love of family and friends and prayer-the love of God, will help your Dad deal with it if he has ALS. You sound like a great daughter, and do not hesitate to post anytime, there are some great people here.
 

Al

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Hi Tara. I don't think shaking as bad as you describe is a usual symptom of ALS. A bit of shaking is normal because of the muscle loss but shaking the food right off the fork sounds odd. Usually we just drop the whole thing. Fork and all. We have trouble gripping things and I have a hard time holding a fork in the normal way now. I have to hold it like you would hold onto handlebars on a bike. Switching the knife and fork back and forth to cut things is fun too.
Good luck on Monday. Let us know how you make out.
 

me

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Tara - Like Al said, from what the doctors told us during testing, shakiness (to that extent) is not necessarily a symptom. My husband gets shaky when he's trying to work with small objects or write, etc. The doctor said that would not be a symptom of ALS.

However, since he had just edged his lawn and his muscles are getting weaker, maybe that is why the shaking?.....Anyway, just a couple thoughts.

Feel free to vent or ramble whenever you need.
 
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