Multiple sclerosis part 2

Please forgive my other post about my S-I-L. I'm not wishing MS on her or hoping she has it. MS can be a devastating disease but considering other conditions it might of been ,I'm glad it's most likely multiple sclerosis. Other conditions that affects the neuromuscular are more devastating and with a much shorter life expectancy. My S-I-L will most likely be able to watch her grandchildren grow up even if she's in a wheelchair. I'm hoping anyways. The debilitation may take years with years between relapse or further disability.

She's been falling for 2-3 years and stopped working recently. With her mom so sick this is more added worry for our family. My mother-in-law is terminal but has not been given that particular label yet.

I'm hoping my M-I-L doesn't deteriorate further from worrying about her children.

Multiple Sclerosis

Accepting some of the recent terminal illnesses and deaths in my family has been difficult but considering their age, they have lived a good life. A long life. Yesterday I was told my sister-in-law most likely has multiple sclerosis. She's 47.

She's had unexplained falls for awhile,painful spasms which resulted in more falls and fractured a vertebrae from the falls. Considering MS is a disease I'm familiar with, I hope it's not something else. Something worse.

We both know the reality of Multiple Sclerosis, we took care of several individuals with MS. My sister-in-law worked in nursing 15+ years, to my 12. I have a spine injury that forced me to leave nursing.

Every diagnostic test is pointing to Multiple Sclerosis and the Dr has told her he wants to do one more test to confirm the diagnosis. But most likely it is MS.  CT scans, &MRI show spots on her brain. Lesions?

My husband has also suffered from unexplained muscle spasms for years. His last Dr prescribed muscle relaxers instead of trying to find out what is causing the spasms. The spasms he has comes on sporadically, and his muscles seize up. Sometimes it takes 45 minutes for the muscles to ease. He always uses the excuse the muscles in his legs are damaged from being electrocuted, which he does have significant damage but the spasms started 15 years after. Sometimes the spasms make him fall to the ground.

Maybe it's time to get him rechecked? Sometimes the unknown diagnosis is more terrifying than knowing.

Like other neuromuscular diseases there is no cure for MS. Symptoms can be treated as they present themselves or after relapses.

" The average life expectancy is 30 years from onset, being 5 to 10 years lower than that of unaffected people. Almost 40% of people with MS reach the seventh decade of life.  Nevertheless, two-thirds of the deaths are directly related to the consequences of the disease.  Suicide is more common, while infections and other complications are especially dangerous for the more disabled. Although most people lose the ability to walk before death, 90% are capable of independent walking at 10 years from onset, and 75% at 15 years" (Wikipedia)

Fighting an Uphill Losing Battle

Last fall I started reading ALS/MND blogs after witnessing the Euthanasia videos Choosing To Die and The Suicide Tourist. There was a few other documentaries but I noticed a theme and perhaps it was unintended. Most of what I seen were people choosing to die that had ALS or MND. Or perhaps the documentaries chose to just show those committing suicide had ALS. Sure there was also Multiple Sclerosis, cancer and PSP (short stay in Switzerland) but the majority shown had ALS/MND.

If you're unfamiliar with ALS do a Google search, even with the generic definition it's scary as hell. The possible devastation and debilitating effects of this disease before someone with ALS dies is surreal. Adding to the hopelessness there is no treatment or cure. Sure there's one medicine prescribed that could extend life for a couple months, months not years.

There is also con-artist who try to sell snake oil or unproven treatments as a possible cure. Realistically even though the con-artists are criminals they do give families hope, hope they might not of had. Some of our modern medications or surgeries happened because of a fluke in research. So when options are limited why not??  The bad thing of improven treatment is it robs someone with ALS of precious time. Time is limited for most people with ALS.

ALS doesn't discriminate on gender, age or race. There is no way to predict who will get it unless the SOD1 gene is present . And unless there is family history of ALS the Drs would not test for that gene. Familial ALS occurs in 5-10% of new diagnosis. There's a mutation in the SOD1 gene located on the 21st chromosome. Over 150 variations of the mutation are documented and in most diagnosis there's no history of FALS (familial Amyotrophic Lateral Sclerosis)

So after I learned more about ALS from the medical standpoint and about Euthanasia, I chose to read blogs about people living with ALS. I follow 2 on a daily basis and 2-3 more monthly. From a medical standpoint it's hopeless but how people deal with the hopelessness varies from person to person. 75-90% of the blogs I've read mentioned suicide at some point. Most of the blogs I read are people choosing to live, adapting to each loss as it occurs with disheartening enthusiasm. Grieving for each new loss but continuing to live with ALS.

One day the blogs will abruptly stop and I may never know if they died or lost the ability to communicate. One of the bloggers I follow may decide to end thing before they are unable to do so but I may never know with certainty.

This is their journey not mine. If they eventually say enough already and take a way out, that's their choice. There should be laws to help them.

Freedom to Live, Freedom to Die

Disclaimer: Although I can't fully disagree with terminally ill people choosing to check out early , I am not advocating for Euthanasia or Physician Assisted Suicide. The purpose of this blog entry and similar entries is to encourage discussion between family members and physicians.

I think the interesting about assisted suicide in the states that allow PAS (physician assisted suicide) is people aren't rushing to take the drug when receiving the prescription. Perhaps knowing they have a way out tomorrow if things get too bad allows them to enjoy today. It may give them peace and hope as strange at that seems. It may also give them more time with family and friends.

Realistically traveling to Zurich when you're terminally ill means you have to be well enough to make the trip so many are forced to go earlier than necessary. People in Oregon can stay at home to die in the comfort of their own home.

In 1994 Oregon became the first US State to pass the Death with Dignity act. If you're wondering the impact of Oregon's Death with Dignity Act....

From the act's passage through 2011, a total of 935 people have had prescriptions written and 596 patients have died from ingesting medications prescribed under the act. The average age of the 596 patients who died from ingesting medication was 71, with 80.9 percent of patients suffering from malignant neoplasms (cancer). Of the 596, 51.7% were male (48.3% female); 44.7% had a Baccalaureate degree or higher; 45.7% were married; primary end of life concerns were loss of autonomy (90.9%), inability to make life enjoyable (88.3%), and loss of dignity (82.7%).  (Source Wikipedia)

Considering there is over 3,890,000 residents of Oregon, 596 is not Alot since it became legal. Not quite the slippery slope we all hear about.

What's also remarkable 339 of those prescribed the barbiturates did not take them and passed away on their own. Perhaps knowing they could go made them appreciate each moment they had left?

Amyotrophic Lateral Sclerosis , MND and Dignitas

This blog is my opinion and my opinion only. It is not to encourage assisted Suicide or Euthanasia. Nor am I advocating assisted dying.

Although I think in certain circumstances Physician Assisted Suicide should be more readily available per the patients request, my blog is about choice and what can be done legally.
The reason I've mentioned Amyotrophic Lateral Sclerosis (ALS) or Motor Neuron Disease (MND) in multiple entries is because over half of the assisted Suicides I have seen  on YouTube were people suffering from these devastating illnesses.  I've read multiple ALS and MND blogs and sadly this is a topic that comes up repeatedly at the beginning of the diagnosis.

One of the devastating things about ALS/MND is It's so unpredictable. There is a beginning to the disease with some troublesome symptoms or inconveniences but most assume it might be from a past injury they had or assume it is because of aging.

And then more symptoms present themselves or the person notices they're weaker in certain places on their body. The Drs start running test to rule out other diseases. Sometimes it's months between new symptoms so ALS is not suspected unless the patient had a  biological family member who died from Amyotrophic Lateral Sclerosis. The SOD1 gene is present in some familial ALS.

Because only a small percentage of new diagnosis had family members die of ALS , it's hard to diagnose until a few unrelated symptoms present themselves.  And then starts the process of elimination to make sure it's actually ALS and not another condition. ALS and MS share similar symptoms. Lime disease share some symptoms with ALS and MS and vice versa. Once other diseases are eliminated as possible causes for the symptoms and every test done, a patient is given the diagnosis of ALS.

It must be very difficult for a Dr to give this diagnosis and tell the patient there's No Cure but harder for the patient that receives it. Most will look up ALS/MND to get a general idea what they might face and search for possible cures or new research.

"Most people with ALS die from respiratory failure, usually within three to five years from the onset of symptoms. The median survival time from onset to death is around 39 months, and only 4% survive longer than 10 years.

The best-known person with ALS, Stephen Hawking, has lived with the disease for more than 50 years, though his is an unusual case. " Information and paragraph found on Wikipedia.

Because of the unpredictability of ALS those who seek help from Dignitas are forced to go too soon because of the fear of ALS progressing too fast. In order to take their own life the person must take the medicine by themselves. In the program "Choosing to Die " hosted by Sir Terry Pratchett, Peter Smedley went earlier than he had to, in order to protect his wife from prosecution because she accompanied him to Zurich.  In the Suicide Tourist , Craig Ewert had Bulbar onset ALS and ended his life at Dignitas. Ewert's lungs and arms were affected. The program never did say why Ewert chose to go when he did but I'm assuming he might of been losing the ability to swallow or feared that might be next to go.

If Assisted Dying was available in the U.K. both might have waited  or enjoyed their families longer. It's just a thought.

This blog is my opinion and my opinion only. It is not to encourage assisted Suicide or Euthanasia. Nor am I advocating assisted dying.

Right to Live and the Right to Die

Although I can't fully disagree with terminally ill people choosing to check out early , I am not advocating for Euthanasia or Physician Assisted Suicide. The purpose of this blog entry and similar entries is to encourage discussion between family members and physicians.

Euthanasia is possibly the most controversial subject being discussed all around the world.  The meaning of the word  Euthanasia means good death.

Euthanasia refers to the practice of intentionally ending a life in order to relieve pain and suffering.  There is three types of Euthanasia- Voluntary, Involuntary and Non-Voluntary.

Involuntary Euthanasia can be considered murder because It's done against a patient's will. The patient chooses not to die.

Non-Voluntary Euthanasia sometimes known as mercy killing) is euthanasia conducted where the explicit consent of the individual concerned is unavailable, such as when the person is in a persistent vegetative state.  It contrasts with involuntary euthanasia, where euthanasia is performed against the will of the patient . Active Non-Voluntary Euthanasia is illegal everywhere in the world except the Netherlands. In the Netherlands, Infants born with abnormalities can be euthanized upon the agreement of the District Attorney, Parents and Physicians. It's disturbing.

Passive Non-Voluntary Euthanasia is legal in some places in the world. It can be the with holding of nutrition, fluids and medications.

Voluntary Euthanasia or Assisted Dying is available in a few places.- Dignitas (Zurich, Switzerland) is the only organization to assist foreigners.

-The interesting thing about Dignitas is once someone sends their medical records and gets the "green light" to proceed 70% of the people won't contact Dignitas again. Once they know they have a way out if things get too bad might give them peace.

-60% of people seeking self termination from Dignitas are German.

- The thing I don't like about Dignitas is they allow people with Severe Mental Illness to end their life. How is the person giving informed consent? If a person is suffering from a devastating terminal illness is one thing but allowing a mentally ill person to end their life is another.

My Mom suffered from Depression and Mental Illness . Although she had a stroke (CVA) and died when I was 12, my Mom never tried to harm herself. She got help whenever she couldn't handle things or for the Depression. We all suffer from Depression at some point in our lives. Some people's depression might last for years when other's depression is short. It's troubling that Dignitas would assist a mentally ill person to end their life or because they're weary about the future.

The process begins by joining Dignitas and paying membership fees. Sending medical records is the next step. Once Dignitas gets records and diagnosis is confirmed, the person seeking help gets the green light to travel to Zurich for 2 seperate evaluations, 2 days apart. After the evaluations the prescription for Nembutal (barbiturates) is written and the person can go forward. The person signs legal documents and is recorded on camera confirming their intentions to end their lives.

The person is also recorded on camera taking the barbiturates to verify they done so willingly. How can someone with mental illness give consent?

It's more troubling that Dignitas profits from these deaths. But until it's available in more places organizations like Dignitas will exist.

One of the biggest fear of legalization of Euthanasia is that involuntary and non-voluntary Euthanasia will be used to terminate the lives of the disabled or elderly without their consent.Could this be The Slippery Slope, everyone fears?

Would Children and Physicians agree to Euthanize a parent for inheritance?

Would HMO (Health Maintenance Organizations), National Health Plans or Insurance Companies refuse to pay for further treatment but suggest Euthanasia? It's happened before and most likely would happen again.

The thing about legalizing Voluntary Euthanasia is the actual wording in the law to eliminate loopholes. The law must be carefully worded and a protocol followed when seeking help for assistance in dying. Any loophole would be exploited.

I am American and live in a conservative state in the Bible Belt. Physician Assisted Suicide is available in a couple states but most likely will never be available in my own state. Which is fine with me. I could never harm myself or allow anyone to intentionally end my life.

To protect my final wishes and take the burden off of my family if I ever receive a devastating diagnosis , I would set up a Living Will . A Living Will or Advanced Directive is a legal document that states what procedures I want and what I don't want. I would also appoint a Medical Power Of Attorney to speak for me when I'm unable to do so and let them know my wishes. 

Even though a Living Will is a legal document it can be changed at anytime but only by me.

There's many things we can do to legally shorten our lives without requesting Euthanasia if we are faced with a terminal illness.

We can refuse treatments , medicine or procedures . We can refuse nutrition and hydration, no feeding tubes or IV. We can refuse artificial ventilation, no vent or trach. We can be DNR, no Cardio Pulmonary Resuscitation. This information is often included in a living will.

In some situations , depending on the diagnosis voluntary euthanasia is understandable and should be allowed if everything else fails. And there is no hope. But a terminally ill person should not have to travel halfway around the world for relief.

Although I can't fully disagree with terminally ill people choosing to check out early , I am not advocating for Euthanasia or Physician Assisted Suicide. The purpose of this blog entry and similar entries is to encourage discussion between family members and physicians.