Siri
New member
- Joined
- Jun 20, 2021
- Messages
- 3
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- DK
- City
- Copenhagen
Greetings from Denmark everyone
I'm brand new to the Forum, and I'm still unaware of many of the technical terms for ALS, so excuse my ignorance and possible lack of English expressions. I don't mean to offend anyone.
My mother was diagnosed with sporadic ALS just about 2 years ago. She was 64 at the time. It started out as a slight annoyance in her tongue. She described it as if her "tongue was in the way", and the annoyance slowly turned in to a lisp. Eventually she had trouble speaking - her speech would sound as if she was tipsy by the end of the day. She obviously also started having trouble eating and would very easily choke on food. She got diagnosed after 8-10 months of observation from doctors. They didn't suspect ALS for 6 months because it progressed rather slowly at first, and because the symptoms started in her tongue. She stopped speaking completely in January. She can only communicate via writing and hand gestures now. Barely. She now also has trouble holding her head up, and her arms are starting to become very weak. Her legs are her strongest muscles as of now, and she still walks independently. But because her oxygen levels are so low, she is very fatigued all the time and has no energy.
I hope this isn't insensitive of me to bring up here, but she has no desire to stay alive. She wants to die, and she wants to die very fast. She announced to me a few months ago that she wanted to seek euthanasia in the Netherlands, but already now I think she would be too weak to make the trip. I'm mentally really affected by it. Not because I don't support her wish or hope of dying, because I most certainly do. But I'm so sad that she has nothing to live for anymore, and I would honestly wish for her to pass away gently in her sleep if that is what she wants.
I'm very curious to know if you or your relative/loved one have been diagnosed with ALS where symptoms started in the mouth region? If they have passed, how long did they live with the diagnosis? And if you are diagnosed, how long have you been living with it?
Thoughts and prayers go out to everyone affected by ALS.
I'm brand new to the Forum, and I'm still unaware of many of the technical terms for ALS, so excuse my ignorance and possible lack of English expressions. I don't mean to offend anyone.
My mother was diagnosed with sporadic ALS just about 2 years ago. She was 64 at the time. It started out as a slight annoyance in her tongue. She described it as if her "tongue was in the way", and the annoyance slowly turned in to a lisp. Eventually she had trouble speaking - her speech would sound as if she was tipsy by the end of the day. She obviously also started having trouble eating and would very easily choke on food. She got diagnosed after 8-10 months of observation from doctors. They didn't suspect ALS for 6 months because it progressed rather slowly at first, and because the symptoms started in her tongue. She stopped speaking completely in January. She can only communicate via writing and hand gestures now. Barely. She now also has trouble holding her head up, and her arms are starting to become very weak. Her legs are her strongest muscles as of now, and she still walks independently. But because her oxygen levels are so low, she is very fatigued all the time and has no energy.
I hope this isn't insensitive of me to bring up here, but she has no desire to stay alive. She wants to die, and she wants to die very fast. She announced to me a few months ago that she wanted to seek euthanasia in the Netherlands, but already now I think she would be too weak to make the trip. I'm mentally really affected by it. Not because I don't support her wish or hope of dying, because I most certainly do. But I'm so sad that she has nothing to live for anymore, and I would honestly wish for her to pass away gently in her sleep if that is what she wants.
I'm very curious to know if you or your relative/loved one have been diagnosed with ALS where symptoms started in the mouth region? If they have passed, how long did they live with the diagnosis? And if you are diagnosed, how long have you been living with it?
Thoughts and prayers go out to everyone affected by ALS.