Thursday, May 1, 2014

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.

Tuesday, April 29, 2014

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?

Monday, April 28, 2014

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: