Kathy stitz
Forum Replies Created
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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 challenging.
On a more positive note, I just got back from going to the beach with my mom for five nights. It was nice to get away from home for a few days and relax there.  I hope everyone had a good summer and thank you all for your support and encouragement.
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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?
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Hi Janice,
I was diagnosed with bulbar ALS in June 2020. What specific information from others with bulbar ALS are you seeking?
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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 expensive and I agree with the moderator that it has not been proven to be an effective treatment for ALS.
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David, sorry to hear you have covid and best wishes for a speedy recovery.
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I totally understand your feelings, Marianne. When you go to the doctor, you expect them to make you better. That doesn’t happen, though, with ALS. There’s no cure for it and little that the doctors can do to help pALS. I have often felt frustrated, disappointed, and sometimes angry. I have also felt depressed and hopeless.  It’s hard to adjust to a new way of life and to not being able to do things that you did before. I wish I had a cure for all of us who are suffering every day.
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Hi Jennifer,
You have shared your blog with us earlier this year in May- the new happiness with ALS blog! under the ALS Awareness Month forum. Thanks so much!
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Hi Mary Kate,
It really depends as to what will help. I also have that issue and tried what you mentioned as well as the scopolamine patch without success. Then I had Botox injections into my salivary glands so that has helped to control the excess saliva for me.
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Wow, way to go Joe and David! Thank you for helping to raise awareness and funds for ALS research.  Best wishes to both of you.
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Hi everyone, thank you for your posts and your suggestions.  I am just having a very difficult time with not being able to eat and have been losing weight as well. I also have a lot of difficulty with speaking. I’m trying to deal with all of these changes but it gets overwhelming. I hope it will get easier soon. Best wishes to all of you.
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I’m revisiting this topic because today is my birthday and I’m thinking about all of you and hoping that all of us are able to celebrate many more birthdays.  As always, thank you all for your help and support.
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Why did it take over 2 months to get the results?
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I agree with Amanda but actually getting to talk to the doctor can be pretty difficult sometimes.
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It seems like you have been doing a lot this summer, Marianne. Having ALS definitely makes our lives more difficult in many ways but that’s great that you were able to travel to Colorado and have family and friends over as well!
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That’s wonderful Mary! Thanks so much for sharing.
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I have been going to so many doctors because of having ALS that I haven’t had much time to do anything else. I also recently went to the Emergency Room and then was in the hospital for three days so I haven’t been having a good summer. I hope other pALS have had a better summer than I have had. It would lift my spirits to hear from other pALS about the things they have been doing this summer or places that they visited.
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Hi Amanda,
Thank you for your post. I’m sorry to hear that you are experiencing so many difficulties and we are all wishing you all the best. Thank you for all that you do to help pALS and their caregivers.
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Hi Ginger,
Thank you for your post. That’s wonderful that you are still able to do a lot of activities and that you have family and friends for help and support. I admit I have not been coping with my ALS diagnosis very well and have often been very depressed about it. It’s something that’s hard to accept but we really have no choice about it. We just have to accept it and get support from others when we need it. Thank you again and best wishes to you.
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I really sympathize with all of you who are waiting to find out what is causing your symptoms.  However, I disagree that the waiting is the hardest part. To me, the hardest part is actually having ALS and trying to cope with the mental and physical effects of this condition.  When you are waiting, you might not have ALS. You might have a condition that is able to be treated effectively.  With ALS, there is no cure and no effective treatments. Many pALS die within a few years after being diagnosed.  My hope is that those of you who are still waiting will be able to get treatment for your symptoms so that you can feel better. For those of us that have ALS, I hope that a cure will be found soon.
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Hi John,
Thank you so much for your post. It has been a year now since my ALS diagnosis and it has been a very difficult year for me. I experienced other health issues in the past but this one has been so devastating and debilitating.  Since there is no cure for ALS and not much that the doctors can do for pALS, I have often felt depressed and hopeless. I wish I had a magic wand I could wave and make all of us better. It is important for pALS to take care of themselves mentally and physically but this is a lot easier said than done.  Finding joy and meaning in our lives and trying to maintain hope is essential.  Thank you again.
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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.
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Yes, well said Pepper.  Thank you so much.
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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 nobody had ever asked me that before. I responded by saying no.  That was all that I said. Afterwards I was upset about it for a while and I was trying to forget that it had happened.  I never told anyone that this had happened to me. I felt embarrassed about it. I bring it up now in order to make pALS aware that this can happen.  Like I said, I was totally unprepared for this. We cannot control things that other people say to us but only how we react.
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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.