Last reply 4 days ago
MAID

Has anyone here ever thought of ever using MAID aka Medical assistance in dying
I thought of it many times and emailed dignity in dying and MS is one of the illnesses that qualifys for this MAID.
Now it’s just me thinking if this is what I want to do. I dont want this suffering anymore.
My quality of life is not a quality of life.
Would like to hear back from others as to what your intake is to do this.

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lori123
1 week ago

@anna
Hello I am so sorry to hear this. They cannot find a treatment for you??? There has to be a better way. You really need to talk to someone and your doctor cannot help you. Please don’t give up. I wish for you to heal and feel better.


stumbler
1 week ago

@anna_sousa , You are suggesting taking a major decision. There’s going to be no chance of changing your mind after the event.

I can so understand your feelings. But, you have to see this as a totally selfish decision and needs to be discussed fully with your family.

Life may seem hard, but you have to focus on the good bits. Enjoy those and tolerate the bad bits. We’re here to support you.


hlywln94
1 week ago

@anna_sousa
Wow, this really touched me when I read it. That is a huge decision to make. I had similar thoughts this morning of is it worth all this pain and why would I want to feel this way everyday and as the day passed I realised what’s important and that it is worth it, those thoughts faded away. @stumbler is spot on you have to enjoy what you can and make the most of it, you can’t turn the clock back.


guinness
1 week ago

@anna So you’re thinking of ending your life because you have MS, and the problems it causes you and your quality of life is not as good as you want it to be. Life is hard, some problems put in our way are Enormous, Soul Destroying and nothing to do with MS. But talking about your problems can and will ease your frustration and hopefully change your mind. Take on board what @stumbler has posted


strictlysoca
1 week ago

@anna_sousa I wonder whether you could consider having a mental health review. Our brains are wonderful problem solvers and sometimes especially when we are in chronic pain (including emotional) solutions will be served up which are linked to being low. It is to be expected if your quality of life is significantly changed and challenging that you will have periods of intense grief.

If you are wishing to follow this path then you will have to have counselling anyway and a review by medical professionals so please look for some support and tell your friends and family. I hope you will be surprised at your value to them and the loss if you leave this way. Joy is still possible


strictlysoca
1 week ago

Ps I have thought of it but only at end of life stages and then


strictlysoca
1 week ago

Don’t think I could do it as even when I have been at my lowest when I’ve been depressed there has been a new dawn and I think how much I might have missed if I had gone too soon in my 20s now I’m in my late 50s

Sorry about multiple posts


acceptance
1 week ago

@anna_souza I think many of us have thought of it. and obviously the ones who have done it, are not here to comment ?

When qualify of life is non existent month on month, it’s very hard chick.

Finding the positives is like trying to find rocking horse shit, and being positive for others wears thin when you are in that baaaad place.

No one likes to talk of the end stages of this illness, everyone seems to just want to talk about ‘meds’ and ‘beating the beast’.

It wears you down and wears you out doesn’t it?

You sound really depressed and I spect talking through the feelings you are having will help you a little? It may help you gain perspective, formulate a game plan and get the respite you need.

Some rehabilitation of your mind, body and soul seems like what’s needed for you here, before you make any drastic decisions?

It’s always darkest before dawn flower

Sending love n lite to u this day✨🌈💓✨


rogersouthall
1 week ago

anna, completely understand but life does get easier, try to think of those that love you and trust me start thinking is it really worth all the upset to others. Anna, we are always here, my blog has my personal details and your welcome to talk
http://www.wholesorts.com


itsmewithms
1 week ago

As @stumbler posts this is one of those questions you really can’t change your mind on. There are some bleak days for each of us. When I have one of those days I pick a good movie, a funny book or call a friend that I know will cheer me up. There are also good sites like this one full of people that understand, Roger’s site he mentions below, Aaron Boster on UTube to learn more and I always like to watch (and rewatch) Life of Seb on Utube. In video #40 he discusses depression. https://www.youtube.com/watch?v=AgKozlRhT7I&list=PL6ER_vJj2m6LvGc6UsWB1pehBPNtEiaTA&index=41&t=182s

I’ve never taken Tecfidera but when I pull up serious side effects occasional depression comes up but MS can cause depression on it’s own so they aren’t certain if there is an increased risk. You do mention suffering so I sense that you are having pain. Check in with your Neuro office regarding this issues and ask for relief. There is also a nurse line for Biogen that should be available to you. When I look it up in the US I see # 800.456.2255

I used to be able to determine something as “MS related” if it was odd but there was no pain related to it. Now it seems that I have more pain related to my symptoms so checked out Aaron Boster’s (Ohio US MS Specialist) video on pain – https://www.youtube.com/watch?v=UtFmXCDg_Vo

I’m not familiar with the term “MAID” but it may be related to the term “advance directives” we use in the US for the legal form we fill out to indicate our care directives. In reality we should all have one (our church had a workshop on filling one out that I couldn’t attend) and I know my family members with terminal illnesses had them mom (Parkinsons), dad (MDS) and sister (breast cancer) did as they neared the end of their lives. They were very helpful as we knew their wishes.

I feel MS is more manageable than the diseases they were facing and with so many advances being made and ways to manage symptoms I’m still optimistic about my future. There is much I still want to do and see. It may be different than how I envisioned it, that is I may take a train ride through France instead of a bike ride 😉 but it will still be France. I really want to get to Vienna if anyone has an idea how I can get there ;->

One thing I do from time to time is create a “vision board” or page of pictures and/or words of things I would like to do and post it in a visible place. Every day – or week depending on the goal – I try to do something to advance the goal. It may be finding a book or a website to research what I want to do or where I want to go or contact someone that has done that or been there. A little something to make it more real.

I’ve just switched from Rebif to Ocrevus. I was initially on Copaxone. When I look through the efficacy Rebif and Copaxone are low (which some would argue is a good starting point for RRMS while others would say to hit it hard) and Ocrevus is high. I see Tec listed as a medium. If you don’t think it is holding you any more it may be a good time to have that discussion with your Neuro. Aaron discusses how to decide when to change DMT and how to discuss a change with your Neuro

Tecfidera has an interesting approach in fighting MS that sounds like it works for many and maybe did for you before but no longer is. I had never looked into it as it was never raised as an option for me. Aaron Boster explains https://www.youtube.com/watch?v=Gbo70-WxYmw

Aaron’s concept on patient centered care and where he thinks MS treatment should be now and moving towards – I have to agree this is pretty exciting

A lot of material from Aaron but also Seb and Roger’s blog. As you can tell I have been spending a lot of time at my PC lately 😉 reach out if you want to chat-


anna_sousa
1 week ago

@itsmewithms, @roger Southall
I dont know how to reply to people (each individual) so I’m just gonna pick a and choose
The reason why I’m feeling like this is because I’ve had thos dizziness for 2 years now, that cripples me ..I cant even grocery shop any more. My neurologist has indicated why I am dizzy and it’s the back of my neck that has a scar tissue ,so everytime I have to use my body when I’m up and about, it will make me so dizzy. I want a second opinion from a neurologist because I cant live like this anymore
I’m frustrated that i cant do anything anymore because this dizziness is in the way of things. I’m seeing a naturopath/functional medicine cutting out foods that is causing my body infammation. I was told my brain is in fire. When I rest,i dont feel dizzy but once I move I’m screwed with movement that it creates a nightmare for me.
The scar tissue is on the back of the neck
Look up pons and it will give u the proper defintion what it entails.
Few simple words (definition) ull get it
I have no physical pain its the dizziness that causes me pain. It’s like having vertigo 10x worse than that. Thanks for listening


anna_sousa
1 week ago

@acceptance, @hlywin94, @lori123, @strictlysocq,@stumbler,@guiness
I dont know how to reply to people (each individual) so I’m just gonna pick a and choose
The reason why I’m feeling like this is because I’ve had thos dizziness for 2 years now, that cripples me ..I cant even grocery shop any more. My neurologist has indicated why I am dizzy and it’s the back of my neck that has a scar tissue ,so everytime I have to use my body when I’m up and about, it will make me so dizzy. I want a second opinion from a neurologist because I cant live like this anymore
I’m frustrated that i cant do anything anymore because this dizziness is in the way of things. I’m seeing a naturopath/functional medicine cutting out foods that is causing my body infammation. I was told my brain is in fire. When I rest,i dont feel dizzy but once I move I’m screwed with movement that it creates a nightmare for me.
The scar tissue is on the back of the neck
Look up pons and it will give u the proper defintion what it entails.
Few simple words (definition) ull get it
I have no physical pain its the dizziness that causes me pain. It’s like having vertigo 10x worse than that. Thanks for listening


stumbler
1 week ago

@anna_sousa , have all other potential causes been ruled out?

I am aware of a condition called Benign Paroxysmal Positional Vertigo (BPPV), which should have been ruled out. There may be other non-MS conditions, which should be able to be eliminated by an Ear, Nose and Throat (ENT) Specialist.


anna_sousa
1 week ago

@stumbler
Yes , ENT HAVE BEEN CHECKED AND EVERTYHING IS FINE. BPPV that hasnt been checked but I had it years ago. I went to physio, osteopath ‘s, did reiki. So I don’t know what else to do..i am seeing a naturopathy/functional medicine PHYSICIAN and changing my foods completely, because my autoimmune and inflammation in my body using the Terry wahls protocol. And we’ll see how that goes. I’m on my 4th day..cutout alot of stuff caffeine,dairy,sweets, eating very clean. Hopefully that will start up my system. We’ll see how that goes.
Do you think I should go see my doctor for BPPV OR JUST wait it out until I do this autoimmune paleo (AIP) . I dont think BPPV is an issue here. Or could it ? Something should of given by now ,its been like 2 years.


stumbler
1 week ago

@anna_sousa , I would have thought that the ENT Specialist would have checked it out.

If you do mention it to your GP, be careful how you bring the subject up. Some Doctors don’t like those of us who try to self-diagnose……

Have you tried over-the counter (OTC) travel sickness medication? It’s helped some members with vertigo.


anna_sousa
1 week ago

@stumbler
How would I tell my doctor?
I have tried serc.
Nothing
I have tried others -cant remember their names
Nothing
I have tried LDN ,
LOW DOSE NALTREXONE
IT MADE ME MORE DIZZY

Theres this other medication but only sold in the US so I cant get it here.
Hmmm I think it’s called meclazine

I’m getting very frustrated because I cant get help. My days are getting very dark. I’m getting tired of this !


itsmewithms
1 week ago

I see that there are some facilities in Toronto that are strong in MS treatment and research. Are you being seen in one of them?

Toronto is not a huge distance from me in Western Wisc. If you can’t see an expert to get to the bottom of this in Toronto I could help you get to the U of M (Minneapolis) Neurology Dept or other sites in the Twin Cities or to Mayo in Rochester MN if you can get here…


stumbler
1 week ago

@anna_sousa , try asking a question, ” Could it possibly be………….?” and let them take it from there.

There’s an interesting article about Vertigo here. It details some potential causes :-

https://www.nhsdirect.wales.nhs.uk/Encyclopaedia/v/article/vertigo/

Try asking your local chemist for a good anti-histamine for motion sickness……..

Don’t let your days get too dark. We’re all here to try and shed a bit of light for you.


nutshell88
1 week ago

@stumbler I dont understand what do you mean by saying selfish! selfish in which way?


nutshell88
1 week ago

now I understand. @stumbler
sorry to know you feel this bad. trust me life has giving you a gift. living on its surface even if its in hard circumstances
living there is better than saying goodbye to all your good memories in the past better thing might happen now or in the future

i wonder is it even legal to do so where you stay!! im shocked if you were someone i know in my country I’d give a ring to … to keep you with us x


itsmewithms
1 week ago

@stumbler @nutshell88 I think that he is saying that whenever anybody leaves this earth the pain is felt by those that remain. I don’t think people always realize what they mean to others or the impact they have-


itsmewithms
1 week ago

I usually watch some information video while I eat dinner and today watched this one on “dizziness and MS” to learn more about it. Thankfully it isn’t one of the symptoms I have experienced. This was an interesting watch for those that have not experienced it. Apparently it is pretty common so we should all be aware of it. At the very end are also some coping ideas in case we do find ourselves there,

My step-dad recently went to the ER with Vertigo, he does not have MS and a friend of mine had awful episodes that she resolved in a physical manner. She actually had a benign brain tumor and didn’t have any more episodes after it was removed. My friend would sit on the edge of her bed and put her head between her knees and then violently throw her shoulders back onto the bed and turn her head in the direction of the spin. If needed she would do this a few times and that would hold her until it happened again.

I don’t know if you have tried any of the methods listed on the internet to resolve vertigo…not sure if they would work as the cause is stemming from MS but if you are truly miserable it may be worth a shot.


anna_sousa
6 days ago

@itsmewithms,@stumbler
ItsmewithMs-when u say violently,u mean faat? That will make me very dizzy?
STUMBLER
what do y mean by local chemist? Is it the same as pharmacist?


itsmewithms
6 days ago

Yes, she would really throw her head back onto a pillow and look into the direction of the spin. I think different methods work for different people. I talked through several methods with my step-dad that had a strange bout of vertigo and went to the emergency room. Made me nervous as he would have to drive his big truck 15 miles to get to it…alone! he was scolded.

These were the ideas I found on the internet- I haven’t had an occasion to try them personally as I haven’t had any more bouts and neither has he: Epley Maneuver, Semont Maneuver, Half-Somersault or Foster Maneuver, Brandt-Daroff Exercise

You should be able to put them into google to find the directions or I can send directions for each if you would like. I saved them in a word document for reference-


stumbler
6 days ago

Sorry, @anna_sousa , yes, a pharmacist is the UK is frequently called a chemist.


lori123
5 days ago

@anna_sousa
I thank you for relying too me. I am not on my phone all the time sorry. I just you get the help you need soon. I know when we don’t feel good it sucks. Just hang on it has to get better.


anna_sousa
5 days ago

@lori123
Thanks for ur aupport
Yeah it’s hard,waking up in the morning and try to make something to eat…and then starting to feel dizzy. I want to go to the grocery store but I dont want to have that crippling feeling by doing stuff. It’s a terrible way of living..I cant even do things anymore
This has crippled my life . I cant stay in bed all day ,that’s when u don’t feel anything ,but once I get up thats it


lori123
5 days ago

@anna_sousa
I am so sorry! I can’t imagine what you are going through. I am in bed most of the day. I don’t leave the house much. I have help thank goodness because I cannot do much either. I really hate having MS.


anna_sousa
5 days ago

@lori123
I can move my legs, arms, walk,the only thing is this dizzyness. It’s crazy.. Always have brain fog
My head feels like its gonna explode at times,when I’m doing to much.
I have alot of stress that I’m dealing with. It’s not helping my head at all.


lori123
5 days ago

@anna_sousa
Yes Stress is the killer!!! I know I have stress and that is why I am in bed all the time!! I find this Disease really hard to handle!!
I am trying to make the best of my life!! I love my family!!


anna_sousa
5 days ago

@lori123
Uve been diagnosed 2 years ago and ur primary progressive. What has this disease done to u that u are PPMS, so quickly?
This dizziness makes think sometimes that I’m in the next type of MS..
I have no help from my family as they are old school and dont understand sickness. And even if they got something they wouldnt get it anyways. They are not compassionate at all.my daughter is 24 and not living with me but with her dad and has never shown any interest as to what I have, it’s her father that has brain washed her. I have 2 sisters and 1 brother and only 1 sister has some compassion. The only person that took me in after selling my condo was my BF and if anything was to happen to me ,he will have it all.
He’s the only one that is there for me and that’s it. My parents are garbage and they are the ones that are old fashion, they really dont care because their thinking is “thank god her BF took her in” that thinking goes with all my siblings as well. But that’s okay we are all getting older and it is what it is. I need help now NOT in 5 years. BUT THATS OKAY. Theres karma. My BF DESERVES IT ALL. Hes done alot . Comes to my appts ,just knows everything about me and my illness.
Like I said he’s gonna get it all.
That’s why I have that feeling of dying because noone cares .
Sorry to vent to u but it makes me feel better.believe it or not. I am due for alot of changes now in my health. I have to get better for myself and only me. I think I got MS as a reason to learn about my life and open my eyes wider and wider . Oh believe me it really has.
😊


nutshell88
5 days ago

I care hehe as I said I’m a Saudi women
lived in the uk for 2 yrs felt like dying lol of a car crash or metro by accident as a saudi women I wasnt ised to your life style
was off meds my life my body my choice
Im 32 yrs now diagnosed age 17 200my health is still perfect

I never imagine myself in a disabled condition loo i feep my brain is printing it out and it becomes real

live your life have fun watch Netflix not sure how old you are

but life is just one time and what we expect never ever happens exacly almost
if there is anyone would cry after you pass away stay with them
MS is not cancer or heart disease you master it with your mind imagine yourself strong and able it works

and yeah request a house maid to help you in house work and give her a fair wage 😉
I give you another advice
if you are renting upstair flat tell your housing advisor its difficult for you to go up stair you need an elevator
I did thats how they made me have a luxurious comfortable flat at wharton square

sorry for rumbling but i really do want you with is in this world x bet clouds are grey now so dont rush your decisions
could message you anytime with my poor english pardon 😂


john_barry
4 days ago

@anna_sousa I get it, I have also thought about ‘kicking my own bucket’ when it finally gets intolerable. When I was first dxed with ppms in the ’80s I even planned a mountain climbing ‘accident’ (I was living near Banff at the time) while I could still manage to get up the face I had chosen. The problem is I kept adapting and learning to deal with my situation as the ms worsened and I have found different things to relish in my life. Over the years I have redefined intolerable many times, it is now; wheelchair bound, incontinent, constant pain and not able to live independently. When I get to that point, I’ll shuffle off, but I wonder if I’m being a bit melodramatic, drawing and redrawing these lines in the sand. I have no doubt that if I had foreseen the state I am now in I’d have been horrified and unable to continue, but I have different goals and interests now. I guess what I am saying is you have the right to end it if things are really intolerable, but intolerable is a slippery concept.


itsmewithms
4 days ago

This podcast by Aaron deals with end of life wishes…watching it now…good idea of all to think about and know for our loved ones https://www.youtube.com/watch?v=Y9bomrU-crk

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