Kathy stitz

I think that, when you have a condition like ALS, sometimes other people try to do everything for you and speak for you instead of allowing you to do things for yourself and remain independent for as long as possible.   They think they are being helpful by doing this but they really aren’t.

Yes, well said Pepper.   Thank you so much.

Thank you Pepper and Marianne for your posts.

Here is something else that happened to me recently.   A few weeks ago I went to the grocery store and when I was paying for my items, I was talking to the cashier and the cashier asked me if I am deaf.  I guess she asked that because of my speaking difficulties.   I was taken aback because nobo…[Read more]

I think with having ALS and the speaking issues, it makes other people not even want to be around you anymore so then you are just isolated and lonely.   I deal with this in a negative way by being depressed that all of this has happened to me.

I just got a feeding tube a few days ago and wanted to compare my experience at the hospital to other ALS patients to see if it was similar or different.   Thanks!

I have some questions about getting the feeding tube.  How long past your procedure time did you have to wait?  Did you have anesthesia or not?  Were you kept in the hospital until the next day or did you go home the same day?  Were you sent home with formula or not?  Do you feel you received adequate instructions about how to use and care for…[Read more]

I don’t think you can compare MS and ALS because MS usually isn’t fatal but ALS is always fatal.

Aloha Frank, thank you for your post.   It seems like you have a great support system so that is wonderful.   I have had a lot of difficulty with coping with this diagnosis.   When you go to the doctor, you expect that they will make you better and then you will be back to the way you were before.  With ALS, though, that doesn’t happen.   There’…[Read more]

In my opinion, certain factors about ALS can influence someone’s thoughts and feelings.   For example, bulbar-onset ALS has a less favorable prognosis than limb-onset ALS so if a pALS has the bulbar-onset ALS, it could cause the person to be more depressed and upset if he or she is focusing on that too much.

How many different genes are there that they can test for to determine if someone’s ALS is genetic or not?

Dagmar, thank you for the information.   I do recall reading that now.  What I was referencing was another article I had read about it that has similar information.

I personally think a high level of exercise has something to do with it.  I have noticed that a lot of pALS have said they exercised a lot prior to being diagnosed with ALS.  Yesterday I read an interesting article about the relationship between exercise and ALS.  I don’t know how to put the article on here but it was called:  Strenuous Exe…[Read more]

Unfortunately doctors don’t know what causes ALS, although there are many theories about what might cause it.  That’s one of the things that is so difficult about having ALS.  We don’t even know why we have it!  They need to have more of an understanding about what causes it in order to try to find a cure for it.

Dutch, welcome to the forums.  Thank you for your honesty.  Your feelings are normal and justified for what you are going through.   I’m sure you will find that the participants on these forums are kind and caring and willing to help and support each other.  Like you said, having ALS is extremely challenging both mentally and physically.   Take…[Read more]

Any other responses?  Thanks for your help!

I agree that Aloha Frank said it well !

I’m grateful for my mother.  She has been helping me every day.  I’m grateful to be able to spend time with family and friends.   I’m grateful that I’m still able to walk and drive.   Last but not least, I’m grateful to be able to communicate with all of you.  Thank you so much for all of your help and support!

I wanted to post it in Living With ALS.  Thank you!

Just realized I posted this in the wrong forum.  Sorry about that!  Dagmar, thank you for your response.  I will try to just focus on today!