[Kathy stitz]

Thanks for your response Dagmar.  Those are wonderful things to be thankful for.  I will just be staying home for Thanksgiving.  I live with my mother so it will just be the two of us at home and we will eat dinner at home.  I am very thankful for my mom and for her love and help during this very difficult time.  I won’t be going shopping either.  Just relaxing, like you said.  Best wishes to everyone for a happy and safe Thanksgiving.

[Kathy stitz]

Hi Ann,

     I hope your husband is able to have his appointment! Best wishes.

[Kathy stitz]

I was supposed to have an appointment at my ALS clinic in December but got a call that I can no longer come in person.  The appointment has to be done through Zoom.  I have never even done Zoom before but we had a friend come over and set it up on our computer.  I am concerned because you cannot have a physical examination through Zoom and to me that is an important part of the appointment.  This coronavirus has affected everyone in some way.  It has been very sad and upsetting.  We currently have about 250,000 deaths from coronavirus just in the United States and there will be many more deaths before there is a vaccine available.  I agree that many people are letting their guard down since it has been going on for so long now.  I am not going out places as much as I used to but it is very concerning that we are having a surge again.  Thank you to all of the doctors and medical professionals who are working hard to save lives.  Everyone please take the virus seriously and take precautions to protect yourself and others.

[Kathy stitz]

I have found myself having a lot of worry, fear, and anxiety about the future.  This hampers my ability to live in the present and enjoy each day.  It takes a lot of courage and strength just to make it through another day without giving up.  It is inspiring to hear from people with ALS like Dagmar and Duane who have been living with this condition for several years.  It gives others with ALS hope that maybe they too can live that long. I agree with Duane that people with ALS could die from something unrelated to ALS.  I think, though , that when given a diagnosis of a fatal condition it puts you in a different kind of mindset because basically you are being told that the amount of time you have to live is more limited than it otherwise would be.  This is very challenging and difficult to deal with.  I try to take my mind off of it by keeping busy and keeping my mind occupied but it often still enters my mind.  Having ALS is both psychologically and physically damaging but I am grateful for the support and advice from others who are also suffering a lot with this condition and understand what all of us are going through.

[Kathy stitz]

Thanks Dagmar. I will read the links you provided.

[Kathy stitz]

I am not a veteran but a dependent of a veteran and was disappointed that there is nothing available from the VA for dependents who have ALS.

[Kathy stitz]

Thanks Dagmar!

[Kathy stitz]

Update: I received a letter in the mail today from the MVA stating that I can continue to drive for now.  However, in a year I have to complete the paperwork again to ensure I remain safe to drive. Also I have to notify them immediately of any changes or decline in my medical condition that affects my ability to safely operate a motor vehicle.

[Kathy stitz]

I am feeling more depressed because I am having difficulty with speaking and feel embarrassed when others don’t understand what I’m saying.  Sometimes I also feel frustrated.   I’ve noticed that people I talk to more frequently understand more of what I’m saying than people I don’t talk to very much.  I start laughing because I’m embarrassed. Speaking is something I took for granted before and when you are no longer able to do so effectively it is very upsetting and depressing.  This is just one of the many things about ALS that is so awful and difficult to deal with.  I know that it’s not my fault  but it’s still hard.

[Kathy stitz]

When I was diagnosed, the ALS doctor was very nice and told me he knew it was a lot to take in and that it was very overwhelming.   He told me to just try to stay positive.  This is easier said than done, though!  He also said,  ” You really don’t have a choice” (about dealing with it). Then he said, “Well, you do have a choice”, I guess implying that people can just commit suicide if they don’t want to deal with the diagnosis.  That’s not something that I support , though.

[Kathy stitz]

Thanks everyone for your support and advice.  I was just diagnosed a few months ago and I admit I have not had a positive mindset about this so far.  I hope to be able to get to a point where I am not as depressed and stressed out about it so I can try to have a better quality of life.  I really enjoy helping other people and that is something that gives me a purpose in life.  Thanks again and best wishes.

[Kathy stitz]

I think it is just difficult to have hope with this diagnosis.   10 to 20% of people with this live longer than 10 years but that is not a very high percentage.  Most people with this will not live for that long.  I know there are people who have and I am happy for them but this is not the reality for most people who are diagnosed with ALS.

[Kathy stitz]

Thanks for your response Amanda.  I have read some of the articles that Dagmar has written. I am sorry that you have had family members with ALS. I go to a therapist once a week and my mother has talked to our local ALS association.  I am glad to have found support and encouragement from the participants on this forum.  This is really important for all of us who are struggling so much with this horrible condition.  I am also praying for a cure for all of us.  I believe I have a lot of courage and strength and these are things that have helped me to cope and to not give up.

[Kathy stitz]

Thanks for your post Amanda.  I was just diagnosed with ALS in June 2020.  However, I would be really interested in hearing from other ALS patients in regards to this question.   I have read that the average life expectancy after diagnosis is 2 to 5 years.  This has made me feel very depressed and hopeless.  Also not knowing how fast the condition will progress  causes a lot of anxiety and fear about the future.  It’s difficult to predict for individual patients how fast it will progress and how long they will live.

[Kathy stitz]

Thanks Carolyn.  I appreciate your response.   It is so difficult to have this terminal condition that has no cure and to struggle with so many different feelings and emotions as a result.  I am praying for a cure for all of us but for now we have to just try to be positive and live our lives in the best way possible.  This isn’t easy and there will be many difficult times and we have to just do our best to cope with this awful, life-changing condition.

[Kathy stitz]

Hi Leslie,

Thanks for your response.  I am proud of myself for the time and effort I have put into trying to deal with this situation.  This is something I try to remind myself of when I become angry about it.  I feel like people have the right to know who reported them and this is just another situation in life that is unfair and frustrating.

[Kathy stitz]

Hi Carolyn,

I am sorry to hear you are experiencing so many difficulties.   It is quite shocking, upsetting, and overwhelming to get this diagnosis.  I was diagnosed with ALS a few months ago, in June 2020.  Since then, I have had a lot of difficulty with coping with this diagnosis.  Denial is a totally normal reaction.  Sometimes I have tried to tell myself I really don’t have ALS.  I have also experienced depression, anxiety, sadness, frustration, and irritability.  This forum is a place where you can find people who understand what you are going through and can provide encouragement, support and advice for the challenges you are facing.  Dagmar and Amanda are excellent moderators of the forum.  Please take time to read posts from the other participants.  There are many different topics relating to ALS that you can post comments about.  We all support each other and learn from each other.  Best wishes to you and please don’t hesitate to reach out for support when you need it.

[Kathy stitz]

Hi Dagmar,

My mother said that the mva said that nobody has to tell the person first that they are reporting them, not even doctors.

[Kathy stitz]

I get a flu shot every year.  This year I got it in August.   I get it at Target because they give you a $5 certificate for Target if you get it there.  Where I live, they do this.  I don’t know if they do in every state.  I also recently got a pneumonia and tetanus shot.

[Kathy stitz]

I agree that people who have ALS are the true heroes.   It is so difficult to have a terminal illness that has no cure.  I am praying for a cure for all of us who are suffering so much.  The courage, strength, and determination that pALS have is inspiring.

[Kathy stitz]

Hi Dagmar,

Thanks for your response to my post. I haven’t been told I cannot drive yet.  Like I said, I turned in all the paperwork to the mva and am still waiting for their decision.  That was funny what you said about your husband driving, though!  It feels good to laugh even in the midst of the suffering, not just for myself but all of us who are suffering with this horrible condition.

[Kathy stitz]

Hi Susana,

Thanks for your post.  Glad you are still able to drive.  Another thing about the situation I described is that I think people should have the right to know who reported them to the mva.  Best wishes to you.

[Kathy stitz]

I am younger than 50 so I haven’t had the shingles vaccine.  I think it’s important to get it though if you are over 50 so I ‘m happy to hear that others who have replied have done so.

[Kathy stitz]

I have gone to ALS clinics at 2 different hospitals and wasn’t really pleased with either of them so I didn’t want to go back.  I live with my mother and she said to me , ” Well, you have to go somewhere for follow-up care, and no place is going to be perfect.”  Also I think it’s kind of ridiculous that there’s only one day a month that patients can even go to the clinics.  The doctors act like they are so smart and sometimes I have wondered why they have no cure for this if they are so smart.  I am disappointed that there is no cure.  People who have ALS are really suffering a lot both mentally and physically and a cure is what would help them the most.