Dignitas/ forums

[Jolene40]

I have applied to Dignitas. Submitted all my medical paperwork and hope to be accepted. I do not wish to die at all but my physical suffering is horrific and worsening rapidly. I have no quality of life at all. I can't even eat food am on iv nutrition in hospital.
Are there any other forums where you can talk to others in a similiar position who are planning thwir exit via dignitas or by themselves.
It is very lonely trying to navigate the system. You can't talk about it or tell.anyone as no one can handle it and there is the worry that anyone would be implicated in assisting a death!
Thanks all

 

[Hush Sweet Charlotte]

Hi Jolene,

You could talk to Michael Irwin https://www.tlc-switzerland.org.uk/ though I don't know how much practical advice he can give you. Are you in the UK? You could talk to http://www.befriend-at-the-end.org.uk/

I spoke to Michael Irwin but it seemed too impossible for me to apply to Dignitas so decided not to try. It seems you almost always need someone to go with you and I don't have anyone. I thought Life Circle seemed nicer than Dignitas and was more keen to try them.

I also have the neurological version of Sjogrens but they keep telling me I don't have it, so have no diagnosis, except of ME. I can't get access to the Exit forum because of a lack of medical evidence, even though I've been too sick to leave the house in 5 years, and this was before even getting Sjogrens. I'm wondering if there's a discussion of Dignitas / Life Circle etc there.

Love from Charlotte.

 

[Jolene40]

Thank you so much Charlotte. This illness is absolutely devastating yet underplayed and undermined hugely.
I am in the u.k yes.
I dont have the 10k to put myself down care of Dignitas so will be crawling for a concession. Ive multiple problems on top of the sjogrens so i will be so devastated if they decline.
Im going to look at those links you sent me.
Im not surprised at all they deny you have it. I honestly believe i would be a better neurologist than most the *** morons ive had to deal with.
Loads of hugs xx

 

[Prénom Surnom]

Thank you so much Charlotte. This illness is absolutely devastating yet underplayed and undermined hugely.
I am in the u.k yes.
I dont have the 10k to put myself down care of Dignitas so will be crawling for a concession. Ive multiple problems on top of the sjogrens so i will be so devastated if they decline.
Im going to look at those links you sent me.
Im not surprised at all they deny you have it. I honestly believe i would be a better neurologist than most the *** morons ive had to deal with.
Loads of hugs xx

I'm sorry things are worse Jolene and I hope this works out for you. Nobody should have to suffer like this. I saw a Neurologist who is one of the world's top stroke specialists, and he actually said "Sjogren's doesn't cause any Neurological problems". One of the worst parts about this disease is that most doctors don't know enough about it but won't admit it.

Hi Jolene,

You could talk to Michael Irwin https://www.tlc-switzerland.org.uk/ though I don't know how much practical advice he can give you. Are you in the UK? You could talk to http://www.befriend-at-the-end.org.uk/

I spoke to Michael Irwin but it seemed too impossible for me to apply to Dignitas so decided not to try. It seems you almost always need someone to go with you and I don't have anyone. I thought Life Circle seemed nicer than Dignitas and was more keen to try them.

I also have the neurological version of Sjogrens but they keep telling me I don't have it, so have no diagnosis, except of ME. I can't get access to the Exit forum because of a lack of medical evidence, even though I've been too sick to leave the house in 5 years, and this was before even getting Sjogrens. I'm wondering if there's a discussion of Dignitas / Life Circle etc there.

Love from Charlotte.

Hi Charlotte, I'm sorry to hear you are suffering with this too. I'm in the US and it's also very hard to find doctors here who can diagnose this. I thought this link might be helpful to you, as this hospital treats patients from all over the world and may be able to recommend someone in the UK who can help you.

Neurologic Complications : Johns Hopkins Sjögren’s Center

A PRIMER ON THE NEUROLOGICAL COMPLICATIONS OF SJÖGREN’S DISEASE By Julius Birnbaum, M.D. Johns Hopkins Neurology-Rheumatology Clinic The neurological complications of Sjögren’s disease are extensive and range from cognitive difficulties, […]

www.hopkinssjogrens.org

 

[Hush Sweet Charlotte]

If you have no luck with Dignitas, Jolene, there is always Life Circle, who sound more compassionate - and a third Swiss organisation whose name I can't remember but is also mentioned in the PPeH chapter on Swiss options. I think it says this one may charge less based on what you can afford, though the language barrier may make them harder to deal with. I hope you have luck with Dignitas as I'm assuming you have to pay for them just to consider you.

I can't tolerate any medication that remotely affects my nervous system such as antiemetics due to extreme damage caused by an antidepressant (which doctors caused but do not acknowledge) so I can't take an overdose or would be trying to get N. I've had to assemble an exit bag with nitrogen though wish there was an easier way. Something called the Debreather mask will be available soon and in the next PPeH update but it's new and untested and who knows.. so don't want to get your hopes up. Thought I'd mention it but hope Dignitas works out. I'm so sorry this has happened to you.

https://sanctioned-suicide.net/threads/thoughts-on-the-debreather.14517/#post-283291

 

[Prénom Surnom]

Jolene, since you mentioned you were were on IV nutrition, you may not know this, but you have the right to refuse that. Here's a link for you.

Current End of Life Options - My Death, My Decision

Current End of Life Options. This part of the site sets out MDMD’s own understanding of the current legal situation in the UK, but anyone considering following one of the available options is recommended to research it thoroughly themselves and consider taking legal advice as necessary. The...

www.mydeath-mydecision.org.uk

 

[Hush Sweet Charlotte]

Thanks for the John Hopkins link Prenom Surnom - it makes it sound like they're a lot more clued up in the US. They say a lot of patients with this neuro version of SS have negative blood tests, so it's shocking to be told I don't have it because my blood tests are negative, while being left with no diagnosis whatever. Although I'm not sure how much better you fare even with a proper diagnosis, from what Jolene has said.

 

[Prénom Surnom]

Thanks for the John Hopkins link Prenom Surnom - it makes it sound like they're a lot more clued up in the US. They say a lot of patients with this neuro version of SS have negative blood tests, so it's shocking to be told I don't have it because my blood tests are negative, while being left with no diagnosis whatever. Although I'm not sure how much better you fare even with a proper diagnosis, from what Jolene has said.

You are very welcome. The markers come and go. My tests were negative for 2 years, then I had a positive and since then only negatives. There is no real test. The doctors that truly know about the disease know that the symptoms are what matters.

 

[Jolene40]

Jolene, since you mentioned you were were on IV nutrition, you may not know this, but you have the right to refuse that. Here's a link for you.

Current End of Life Options - My Death, My Decision

Current End of Life Options. This part of the site sets out MDMD’s own understanding of the current legal situation in the UK, but anyone considering following one of the available options is recommended to research it thoroughly themselves and consider taking legal advice as necessary. The...

www.mydeath-mydecision.org.uk

Thankyou Charlotte. I could not think of anything worse than starving to death or dying of thirst. I understand it is long and horrific. I just want the nicest way out possible. The links you sent have helped me so much already.

I would love to say i can't believe it but i can believe you were told such nonsense. I have heard all sorts of absolute rubbish. How can something so debilitating be so under acknowledged. Ive met so many imbeciles now i give up. When you know more than them you know there is no hope x

Thankyou prenom. I could not think of anything worse than starving to death or dying of thirst. I understand it is long and horrific. I just want the nicest way out possible. The links you sent have helped me so much already.

I would love to say i can't believe it but i can believe you were told such nonsense. I have heard all sorts of absolute rubbish. How can something so debilitating be so under acknowledged. Ive met so many imbeciles now i give up. When you know more than them you know there is no hope x

I have been getting you and charlotte mixed up- so sorry. Its the brain 'fog' and allnthe meds

You are very welcome. The markers come and go. My tests were negative for 2 years, then I had a positive and since then only negatives. There is no real test. The doctors that truly know about the disease know that the symptoms are what matters.

Ah thats really interesting about your blopd markers changing. All my bloodwork is negative. I fought for years for a lip biopsy as id read so much i knew i had it. I had to go pay amd get it in end and i have it; im seronegative tho. The U.S def know more but its sadly still hit and miss ive heard from many friends online.
Part of the problem witj the dignitas thing is having minimal info to demonstrate how horrific this is. Every doctor tries to make out its anxiety! I have evidence of small fibre nerve destruction and autonomic neuropathy but i also have had progressive muscle wastage that not one docfor would accept so i have nothing in writing to support this. I have written all this to dignitas and hope this with all the other horrible illnesses i have is enough.

 

[Prénom Surnom]

Thankyou Charlotte. I could not think of anything worse than starving to death or dying of thirst. I understand it is long and horrific. I just want the nicest way out possible. The links you sent have helped me so much already.

I would love to say i can't believe it but i can believe you were told such nonsense. I have heard all sorts of absolute rubbish. How can something so debilitating be so under acknowledged. Ive met so many imbeciles now i give up. When you know more than them you know there is no hope x


I have been getting you and charlotte mixed up- so sorry. Its the brain 'fog' and allnthe meds

No worries Jolene. I truly understand. Some of my doctors have been great and others are clueless. It's just a horrible disease that gets no attention.

I didn't have a lip biopsy. I showed positive for SSA only once and everything else was negative. but my Sed rate was very high for several years and I had all the symptoms. My opthamologist told me there are people who test positive for everything but have no symptoms and people who have every symptom severely but test negative so the doctors who truly know the disease understand that the tests are not the only diagnostic.

There is a company in the US called IMMCO that developed some new tests a few years ago and I was positive for only one of them too. I don't know if the newer tests are available in the UK.

Regardless of the tests, you are suffering and that is what needs to be addressed. The Johns Hopkins link may also be helpful for you because I know they sometimes consult with doctors in other countries.

I hope the hospital is making you more comfortable. I will be thinking about you.

 

[Hotsackage]

Does anyone know if dignitas takes people with mental disorders

 

[Jen Erik]

Does anyone know if dignitas takes people with mental disorders

They do; it sounds very tightly controlled.

This thread will tell you more, and there's links there to news stories about mentally ill people they assisted:

https://sanctioned-suicide.net/threads/dignitas-for-30-years-old-people-with-depression.5366/

 

[Jolene40]

They do; it sounds very tightly controlled.

This thread will tell you more, and there's links there to news stories about mentally ill people they assisted:

https://sanctioned-suicide.net/threads/dignitas-for-30-years-old-people-with-depression.5366/

The problem is cost. Its £10k unless you can get some sort of concession. I can't afford that so am asking for a concession due to my poverty status!

 

[Jolene40]

I just made a request to join the peaceful pill forum. I need to be over 50!

 

[Hush Sweet Charlotte]

If you submit medical evidence of some sort I think they will still consider you if you email them and tell them about your situation.

 

[Jolene40]

If you have no luck with Dignitas, Jolene, there is always Life Circle, who sound more compassionate - and a third Swiss organisation whose name I can't remember but is also mentioned in the PPeH chapter on Swiss options. I think it says this one may charge less based on what you can afford, though the language barrier may make them harder to deal with. I hope you have luck with Dignitas as I'm assuming you have to pay for them just to consider you.

I can't tolerate any medication that remotely affects my nervous system such as antiemetics due to extreme damage caused by an antidepressant (which doctors caused but do not acknowledge) so I can't take an overdose or would be trying to get N. I've had to assemble an exit bag with nitrogen though wish there was an easier way. Something called the Debreather mask will be available soon and in the next PPeH update but it's new and untested and who knows.. so don't want to get your hopes up. Thought I'd mention it but hope Dignitas works out. I'm so sorry this has happened to you.

https://sanctioned-suicide.net/threads/thoughts-on-the-debreather.14517/#post-283291

I wouldn't be able to overdose either. I have no colon anymore and everything runs through my system too fast into a bag. I also have absorption issues all sorts. I am going to look at this mask.I looked into helium hood but it terrifies me id mess it all up.

If you submit medical evidence of some sort I think they will still consider you if you email them and tell them about your situation.

Thanks Charlotte. I sent an overview which had gone to Dignitas. I have reams of paperwork so will see if they might consider me before i send. Thankyou as always for your reply x

 

[AcornUnderground]

I see this is an old post. I have Sjogren's, too, severe Primary and it has RUINED me. I have applied to Pegasos and believe I will be approved, even at the young age of 41. It is terrible disease that has taken my entire life. I wonder what happened with any of you other Sjogren's ladies?