Kathy stitz

Amanda and Dagmar, thank you for all that you do to help and support pALS and their caregivers!

Best wishes to you Carol. I hope you get answers about what is causing your symptoms and that you can get treatment and feel better soon.

Hi Maya,

My name is Kathy and I was diagnosed with ALS about a year and a half ago.  I am 45 years old.  For me, it has been like a nightmare.  I wish I could just wake up one day like this never happened.   I have had a lot of difficulty with coping with this diagnosis.   I have been depressed and anxious and I am afraid of dying.   A lot of m…[Read more]

Marianne, best wishes to you and your husband.

Thank you for your responses and Happy Thanksgiving to all of you.

I will ask about palliative care and thank you so much for your help.

Thank you for your response and those are great suggestions!

Janice, thanks so much for your response.   I’m glad that the supplements and powders are helping you to feel better.  Best wishes.

Thank you so much for your response, Dagmar.  I really appreciate it! Thank you for all that you do to help pALS and their caregivers.

Janice, what supplements and powders do you take?

Wow Richard! That’s quite an extensive list of information and resources.   Thank you so much for providing it.  I’m sure it will be helpful to the new members.  Welcome and please don’t hesitate to reach out for support! ALS is a devastating diagnosis and it can be a very isolating experience.   Know that you aren’t alone as you face this and w…[Read more]

Hi Jan,

I also have bulbar ALS and take Gabapentin for pain.

It’s admirable that you care so much about your brother-in-law and want to help him as much as possible.   ALS can indeed be a very isolating experience. Does your brother-in-law have any family members or friends that text him or come to visit him?  I agree with Dagmar that you could encourage him to join this forum in order to communicate wi…[Read more]

Thank you for your response, Marianne.   I am so sorry for what you are going through.   It must be very difficult for you and for your husband and your family.   ALS is such a devastating condition and it’s horrible that there is no hope of getting better.   I had been hoping for a cure but that hope is fading, to be honest.   Best wishes.

Recently I have been grieving because of all of the losses in functioning that happen with ALS.  When there is no hope of getting better, that’s very difficult to deal with and accept.  The reality of it is just shocking and overwhelming.   I try to do things to take my mind off of it but those are temporary distractions.  Staying strong is very…[Read more]

Hi Marianne,

I was just curious about why you feel your ALS clinic visits are a complete waste of time.  Do you feel the visits are of any benefit to you?  What has your experience with hospice been like?

Hi Janice,

I was diagnosed with bulbar ALS in June 2020.  What specific information from others with bulbar ALS are you seeking?

Wayne, I’m so sorry.  That is so young to have this horrible diagnosis.   I will be thinking of your son and best wishes to him and to your family.  I have ALS as well and it is a devastating and debilitating condition.   I wish they had a cure for all of us who are suffering with this every day.  As far as stem cell therapy, I think it is really…[Read more]