May is Huntington's disease awareness month - Have you heard of Huntington's disease?

Have you ever heard of Huntington's disease (HD)? Perhaps you may know it by its earlier name, Huntington's chorea. It's a brain disease that can strike at any age, but most commonly shows signs during the middle-age years. It affects both men and women equally, but it is a genetic disorder passed from parent to child, so for someone to have the disease, one parent must have a dominant HD gene. There are about 300,000 people in the U.S. who have HD. I couldn't find statistics for Canada, but they are very likely proportionally the same as in the U.S.

The disease is a progressive one, with no cure. For some people, the symptoms start slowly, for others more quickly. Unless you know you have your parents have the gene, HD isn't usually the first illness that a doctor would think of if you start complaining of memory loss and confusion, difficulty coping in new situations, some muscle twitching, fidgeting, or clumsiness.

Eventually the symptoms become stronger and begin to interfere with daily activities. The jerking motions and involuntary movements make it difficult to perform even simple tasks, and falls may be common. As the symptoms continue to worsen, it becomes impossible for someone with HD to care for him or herself.

The Huntington's Disease Society of America website has a booklet - a Family Guide - that discusses the symptoms of HD, living with HD, testing for HD, and the search for a cure. The site also offers information on how to get help and ongoing research. For Canadians, the Huntington Society of Canada offers several tip sheets and also provides a good bit of information on HD and on how to find help. These sites are good places to go to learn more about HD.

I personally don't know too much about Huntington's disease, but an online friend who I met several years ago has it. I've been following her journey over the past few years and it made me realize how little most people know about it. So I hope this post has helped raise a bit of awareness about this little known and little understood disease.

Medicinal marijuana helpful in treating symptoms of certain diseases - journal review

Marijuana use is a contentious subject and arguments still abound when it comes to whether it should be allowed for use as a medication to help relieve symptoms of certain diseases and conditions.

As a nurse who has given heavy-duty opiates (narcotics) to patients in need, I cannot understand the pushback against allowing marijuana for medicinal purposes. Anecdotal evidence (information provided by people who are using marijuana) shows that it is helpful for many people, particularly those with cancer or AIDS, who may experience nausea and lack of appetite. More and more, studies are backing this up. Other studies are backing up marijuana's benefit for neurological diseases as well. A review published in the April 29 issue of the medical journal, Neurology, is the latest to say that medicinal marijuana may be helpful in managing some neurologic disease symptoms. The review looked at findings of 34 studies that met certain criteria.

According to a release published by the American Academy of Neurology (AAN), "certain forms of medical marijuana can help treat some symptoms of multiple sclerosis (MS), but do not appear to be helpful in treating drug-induced (levodopa) movements in Parkinson's disease. Not enough evidence was was found to show if medical marijuana is helpful in treating motor problems in Huntington's disease, tics in Tourette syndrome, cervical dystonia, and seizures in epilepsy."

The "certain forms of medical marijuana" means via oral spray or in pill form.

According to the journal article, people with MS who use marijuana may get relief from pain caused by muscle spasms, as well as relief from burning and numb sensations. Marijuana may also help relieve the discomfort of an overactive bladder - another problem associated with MS.

In 2012, a study published in the Journal of Neurology, Neurosurgery, and Psychiatry, found that cannabis extract (tetrahydrocannabinol) helped relieve the stiffness associated with MS. The small study (144 patients with MS and 135 controls - healthy people who did not have MS) found that those who took the extract experienced relief from the muscle stiffness. A study published earlier in the year in the Canadian Medical Association Journal reported similar findings.

The newest AAN review also looked at Parkinson's disease, but did not find that marijuana helped ease the extra movements that can be caused by levadopa, the medication often given to treat Parkinson's.

As always, there are the standard warnings about the side effects of marijuana use, which include:

• Nausea
• Increased weakness
• Behavioral or mood changes
• Suicidal thoughts or hallucinations
• Dizziness and/or fainting
• Fatigue
• Feelings of intoxication

Why is marijuana still being kept from people who need it? Why are we still debating this issue? What do you think?

Sleep - What should be natural evades so many of us

The expression "sleeping like a baby" can be confusing. While it's true that babies can and do sleep very deeply, they also can wake up because of the slightest sound if it comes at the right/wrong time. How many sleep-deprived parents ended up tiptoeing around their babies after spending hours trying to get them to sleep - only to have the doorbell or phone ring moments later?

When we were children, we often fought the need for sleep. We wanted to stay up a little longer, read one more chapter, watch one more television show - anything to keep from going to bed. You never know what we might miss if we're sleeping! As teens, many of us didn't want to go to bed, but once we were in it, it could take dynamite to get us out. But then as adults, as our lives become more complex, we have more responsibilities, sleep often begins to evade us. We don't have time to go to bed when we would like, we toss and turn, and have to get up much earlier than our body would like. What went wrong?

Research into sleep and its effect on our health is ongoing and the results are interesting. In 2008, Harvard University published an article called The Hidden Cost of Insufficient Sleep. The author discusses some of the physical effects that lack of sleep can cause, such as obesity and heart disease. This really came as no surprise to many people who do live with sleep issues. This article from Norway, Insomnia can cause fibromyalgia, (2011) also discusses the issue.

Insomnia or interrupted sleep can also have an effect on our mental health. A study published in the Journal of Affective Disorders found that people who experienced insomnia had a higher risk of developing depression than did those who did not have insomnia. Another article examines the relationship between insomnia and depression: Is Chronic Insomnia a Precursor to Major Depression?

There is also, of course, a lot to be said about how certain health issues cause sleep problems. Someone with fibromyalgia, for example, may be very fatigued but unable to sleep because of pain or sensory issues. Someone who is anxious or depressed may not be able to get to sleep or stay asleep. Other conditions that cause chronic pain or even those that cause inconveniences, such as having to wake up several times a night to urinate, all cause interruptions in sleep that then means a restful sleep has not happened.

So is there hope? Sleep isn't taken seriously enough by many people but it should be. If you are having difficulty sleeping, speak to your doctor about it. Keep a journal with the number of hours you've slept, observations from your sleeping partner if you have one, and how you feel every day. Armed with this information, you may have a better discussion with your doctor or nurse practitioner about what is happening.

Sleeping pills do help many people, but there are other issues involved with medications for sleep, so if a non-medication method can be helpful, it is usually best to try those first.

Do you have trouble sleeping? If so, what do you do for it? Please leave your thoughts in the comments section and maybe we can learn from each other.

Previous posts about sleep on my blog:

• Why don't older people and some sleeping pills mix
• Time changes - more to it than the Clock Change Shuffle
• Is it time for a nap yet?

Quebec's Right to Die Bill - Will it Die Before It Can Be Passed?

Ok, it's the end of February and it's been two months since I posted last. Why is it that we tend to leave our own things for "later" and then "later" never comes?

I like writing this blog. It gives me an opportunity to write about topics that catch my attention or are important to me. So I really should give the blog more attention than I am giving it. Today I want to write about a bill that the province of Quebec (Canada) has on the table - it's unofficially called the Right to Die Bill, but it is really "The act respecting end-of-life care bill."

Assisted suicide, the right to die, euthanasia - they are all very contentious topics. Most people I've spoken to about this over the years are very strongly on one side of the issue or the other. And, it's not unusual for their views to change once they find themselves in a situation where a loved one is dying. Is there a right or wrong when it comes to end of life?

I've seen death in many ways. As a nurse who worked in acute care, I've fought to save patients from dying - through providing life-saving treatment that includes CPR. I've been part of a team in an ICU where patients were taken off life support. I've worked in palliative care, where I held the hands of patients as they took their last breath. I've lived through the aftermath of suicide of a relative. I've lost people I love to "natural causes." I've also loved animals and had to make the decision to euthanize a few, because they were suffering too much and I couldn't bear that. So death is not unfamiliar to me. But I still can't tell you where I stand on Quebec's proposed bill.

The bill is as well thought out as I have imagined such a bill would be. It's been four years in the making as politicians and experts discussed the various aspects and ramifications of such a law if it went into effect. According to the rules, the patient must be over 18 years old and of sound mind, capable of understanding the consequences of their decisions. They must have an incurable illness, declining in health and near natural death. The patient must be in constant, unbearable pain.

I have seen many people in that stage. Some begged to let us help them die - others fought to the bitter end.

The law would allow physicians to help the patient die, but only after he or she has ensured that the patient has weighed all the options and a second opinion from another physician concurs with the prognosis - that there is no chance of recovery.

But what is "constant, unbearable pain?" Those who are living with deep depression may say that they can no longer go on. What about those who do have debilitating and constant pain because of a trauma but they are not fatally ill. What if that pain is unbearable and they can't handle the idea of living with it for another 5, 10, or more years? What if the patient is a very smart 16-year-old? What if the patient doesn't really want to die, but is feeling pressured to let go?

Many who are against the bill are afraid that this is opening a door that can't be shut again. More illnesses, conditions, and reasons will be added to the list of who can be helped to die. They fear that decisions will be made for people who aren't able to decide for themselves. They fear that temporary illnesses that might be managed properly, may seem so bleak that lives are cut short before treatment can be effective.

In a perfect world, an assisted-suicide law may be what we need. But we don't live in a perfect world and abuses do happen - that we cannot deny. So those who fear abuses in this case shouldn't be silenced. But... then we go back to, what about those who are suffering - what rights do they have over their body, their time to die?

Unfortunately, because the government is a minority government and it may be calling an election very soon, this bill may not go any further. This bill on dying will, in effect, die on the table. I don't say "unfortunately" because I want the bill to pass or not pass, but because this discussion is very important and so much work as gone in to it that it is frustrating to those involved to see it all for naught. I know that the bill can be reintroduced next session - but the will has to be there. And will it be?

I am leaning towards, yes, I think we need something like this, but I am afraid of that door being jammed open too wide.