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Albert

New member
Joined
Feb 24, 2007
Messages
3
Reason
PALS
Country
Sweden
State
Vastmanland
City
Vasteras
Hello, I am a Canadian who has been living in Sweden for many years.
I have lived with MND for over a year now and have received excellent service from both the doctors who made the diagnosis and the ALS team that has supported me after that diagnosis was made.
My main question is regarding my rights as a ALS patient in Canada to invasive respiratory care?
A few days ago I spoke to a neurologist here in Sweden about the progress of my ALS. I had asked the question: what is the next step in support when my BiPAP no longer is sufficient? What happens when I need a tracheotomy and phlegm suction on a 24 hour basis. Is a home respirator an option? As a patient with bulbar symptoms I would be unable to speak and well on the way to be unable to move my muscles. I already knew that whether or not ALS patients get this option depends on which country the patient resides and also on the particular physician’s point of view, though some are offered this.
Anyways, I found the doctors response unexpected. He said that he knew of no other ALS patient in the country who had considered this path of living with a respirator as I was doing.
What is wrong with me, I asked myself when I got home and thought about his words. ALS is changing my life and I know that eventually the nerve signals will not get to any of my muscles. Should I not follow the path of so many others that at the point of needing to go on to a respirator, they choose passive euthanasia?
I cannot and will not judge their decisions but I hope that they were informed of not just the limitations of the disease but also of the possibilities available to them. I hope they were offered a choice by their doctors. There is a risk that this choice is not offered at least in Sweden and probably other countries where by law, patients can refuse treatment but cannot demand a specific treatment.
You might ask what possibilities? Well I think we can look to role models such as Professor Hawking at Cambridge and Dr. Knut Julius Moskvil from Norway. Moskvil recently was interviewed about a tool that he uses to communicate. He uses the motion of his eye and some smart technology to communicate via a computer. In fact the European Commission is supporting a research network called COGAIN that provides a forum for the fast growing area of gaze based communication. Such research develops new technology at an affordable price.
For me communication is an important basis for my personal quality of life. I treasure both learning and interacting with others. My illness has changed the manner in which I may communicate but as long as I can communicate I choose a path of actively using any tools that are available.
Right now I am fearful that I will not have the option in Sweden to choose 24 hr respiratory care. What is the situation in Canada. Does the health system support the patients wishes if they wish to continue living with the technology available? If so and I do not find that this is possible in Sweden, return to Canada would be an option.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello Albert. Welcome to the forum. Each of the provinces are slightly different but in Ontario you would have to be a resident for 3 months on returning to get health care back. You would be eligible for full funding then to the best of my knowledge. If it was your choice to go on a vent and trach this would be done. 24 hour care is also dependent on whether you have Canada Pension or private pensions or have a wife to help with care etc. There are a few variables to look into but from what I know you'd be able to get the care you need one way or the other.
AL.
 

Albert

New member
Joined
Feb 24, 2007
Messages
3
Reason
PALS
Country
Sweden
State
Vastmanland
City
Vasteras
Do not go gentle

Thanks for the information Al regarding what Ontario offers us. I need this kind of information, and even Canadian law texts, as I take up the battle here. Here in Sweden, I feel that I am left in the hands of doctors as they are the only ones who can propose treatments such as home respirator care, which they rarely do. I firmly believe that it is up to each ALS patients who comes to that point to make such decisions. But as we well all know laws differ from country to country and it takes time to make change. What I intend to do at least is to try to find the possibilities in my life and with the help of technology exercise them. I have been dealt a poor hand poker hand at this point in life. But I think I can still win the game if I recognize that reality.
Was it not Dylan Thomas who wrote "do not go gentle into that good night"? I think that this is not an option for me while our rights,without a judical basis, at least in this country can be violated.
 
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