The Whitworths of Arizona, bringing science to you in everyday language.

Sunday, January 22, 2017

LBD and Marijuana, Part 1

Now that marijuana (MJ) is legal in many states, we are beginning to get questions and comments about its use.

Bottom line, medical MJ is probably safer for the person with LBD than most pain, anxiety, or behavior management drugs and is therefore worth considering. It is not a cure and probably won't work to improve cognition, even short term.

MJ is NOT an anticholinergic. This is perhaps its biggest attraction for LBD families. It doesn't block acetylcholine,  the main brain chemical that LBD attacks. Thus, MJ starts out being more compatible with LBD than many drugs, including most of those for pain, anxiety and psychosis.

But what about MJ's high? Couldn't that cause more problems instead of fewer? Well, it turns out that there are two types of MJ: Recreational and medicinal. MJ is a naturally grown plant, that produces several "cannabinoids" or chemical compounds, the two main ones being THC* and CBD*. In nature, these two compounds balance each other.

  • THC is psychoactive, and can trigger a high, with hallucinations, paranoia and other psychotic behaviors. If a person is already displaying psychotic behaviors, such as hallucinations or anxiety, it may increase them. Although it is only mildly addictive chemically, it can be psychologically addictive. That is, it doesn't change body chemistry to where it requires more and more of the drug to get the same result the way alcohol does. However a person can become psychologically attached to the process of its use and the enjoyment of the high.
  • CBD is an antipsychotic that acts to counteract the high caused by THC. In some cases, it may decrease already present BPSD* such as hallucinations, delusions, depression and anxiety. However, we believe that CBD's value in this area is more about what it isn't than what it is: it isn't psychoactive and it isn't addictive.

Plants can be bred selectively to produce varying amounts of each compound.

  • Recreational marijuana is produced by cannabis plants bred to have such a high ratio of THC to CBD that the latter cannot stop the psychoactive qualities of the drug.
  • Medicinal marijuana is produced by cannabis plants bread to have such a high ratio of CBD to THC that it prevents any psychoactive effects.
  • Marinol, a synthetic marijuana, is mostly THC with no CBD at all.
  • CBD oil is oil made from low-THC, high-CBD plants. So far as we know, there is no straight CBD product. That is not a bad thing. While both THC and CBD act to treat a variety of issues, THC, with its psychoactive qualities buffered, is often the most effective of the two.

Marijuana has long been used as an effective treatment for:

  • Pain, including chronic nerve pain which is common with Lewy body disorders.
  • Poor appetite
  • Intestinal upsets, such as nausea.

Research is showing that it may also be useful:

  • As an anti-inflammatory agent. It appears to block the release of cytokines, substances that signal the production of inflammation. Thus, it may help with autoimmune diseases such as arthritis.
  • To decrease motor symptoms, such as tremor, rigidity and bradykinesia. The research for this is still very limited, but side effects appear minimal and so it might be worth a try. It only treats symptoms--its effect stops when the drug is no long used.
  • For maintaining circadian (sleep) rhythms. CBD works to improve alertness, especially in lighted areas. Medical MJ may help with excessive daytime sleeping, but it should not be taken before bedtime. THC tends to promote nighttime sleep, but medicinal MJ probably won't be effective and the recreational MJ's psychoactive qualities make it a poor choice for someone with LBD.

Next week, more about marijuana, how to find it and how to use it.

Reference:
Medical cannabis. Wikipedia. https://en.wikipedia.org/wiki/Medical_cannabis

* Acronyms:
MJ: Marijuana, or cannabis. A plant grown for its psychoactive and medicinal qualities.
RMJ: Recreational marijuana
MMJ: Medical marijuana
THC: tetrahydrocannabinol, the cannabinoid or chemical compound in marijuana that provides a high.
CBD: cannabidiol, the cannabinoid in marijuana that does not provide a high.
BPSD: behavioral and psychological symptoms of dementia

LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, January 13, 2017

Treat? Oh Yes! Cure? Not Yet.

We love comments. Agree with us or disagree. That's great. But recently, we've been receiving comments from people advertising cures by this miracle herbal therapy or that patent drug. We cannot support such claims of a cure and no such comments will be published.

We support alternative and complementary therapies. We believe that such non-drug and drug-accompanied treatments can decrease symptoms and the need for drugs and increase quality of life. However, neither they nor any drug can, at this time, CURE diseases like Parkinson's, Lewy body dementia or Alzheimer's. These disorders are hidden for many years, with little or no symptoms, while the damage-causing proteins, such as Lewy bodies, grow and spread. By the time there are enough symptoms present for a diagnosis, the proteins are so numerous and widespread that a cure is as likely as one for Stage IV cancer.

A cure is coming, and some of the clinical trials now in the works sound very hopeful. For starters, researchers are working on ways to identify the presence of disease-causing proteins early on. This will mean that people who feel perfectly healthy will need to be tested...remember there are no symptoms for years!

Researchers are also working on ways to eradicate the damaging proteins, once they are found in the body. Started soon enough, there is hope that these treatments may actually provide a cure. Started after diagnosis, these same treatments could not promise a cure-- but they might decrease symptoms and improve quality of life. However all of this research has many years to go before it is available to the general public.

In the meantime, we will not publish comments advertising "cures." To do so is to encourage our readers to spend hope, money and effort uselessly. Instead, we urge you to investigate all the well-researched ways that non-drug therapies can improve the effectiveness of traditional drugs to decrease symptoms and increase quality of life for both the person with the disorder and their care partner.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, January 6, 2017

LBD and Football: How Do You Vote?

Last week's blog was about how repeated concussions from playing football can cause LBD symptoms to show up sooner and be more aggressive. But even if LBD isn't involved, CTE* is very likely to occur, causing its own type of dementia and an early death. I believe this is a cultural issue. By making football a national sport, by making the players heroes and stars, we show that we care more for our entertainment now than we do for their future health. As a culture, we are encouraging our sons to unwittingly trade their old age and their very lives for our entertainment. We've become a nation of people joyfully sending our own sons out into the arena to fight the lion of football.

And that's why I boycott football. I believe it is the individual person, you and I, who will eventually make the difference. Not the players, whose short term vision is on the adulation and money the get now, not on the, to them, unlikely chance that they will eventually have CTE. Not the NFL, that makes the big bucks on game. Not the coaches, who need to keep winning to keep their jobs. No, it is up to each of us. When we stop supporting the game, it will either change drastically or it will stop being worth playing.

One of the questions I get is, "Well, what about other sports. Boxing, for instance." Well, boxers use their fists as weapons. Football players use their heads. Even when the player leads with his shoulder, the head will absorb some of the impact. A recent article in our local newspaper reported that the average impact speed of a football player tackling a stationary player is 25 mph, compared to a professional boxer's punch of only 20 mph. If you deduct several mph for the average boxer's punch, the difference will be even greater.

One way that many of our local schools are trying to reduce concussions is by providing better helmets. This is no small thing; these helmets cost from $400 to $600 each! But the consensus is that even with the better helmets, concussions are likely to be an ever-present issue. It will continue to be an issue as long as players use their head as a weapon. The article suggests better education of coaches and players about the risks and coaching proper techniques, but it goes on to say that support for this is poor because "People are used to playing the way it is played."

Spectators are used to the violence and expect (demand?) it. I've never been a spectator sports fanatic. And so I'm at a disadvantage now, in my effort to boycott football. I can't say I used to love it but stopped when I learned how it damaged our children. But Jim, now, he really enjoys a good football game. He still watches. Yes, you can see how well my boycott is working. Even my husband, who has been active with Lewy body dementia since 2003, still watches football! But that means I can use him as a guinea pig. "Why do you watch?" I ask.

"It's exciting," he says.

"But, knowing what you know, how can you continue to watch?" I ask.

He shrugs. It's there. It will be there whether he turns the TV off or not. And so he turns it on.

I remember back to the 1980's when smokers were in the majority and it was considered bad form for non-smokers to complain. That changed when researcher found that smoking was bad, not just for the smoker, but for anyone around them. Non-smokers became more verbal. Restaurants started banning cigarettes. We voted higher taxes on cigarettes. People began to quit, one by one. Eventually, smokers became a minority.

I think we have to do the same with watching football. We have to accept our responsibility just as smokers had to accept theirs. Each person who watches football on TV or in a stadium helps to turn our young men into eventual dementia patients.

That's pretty extreme, you say? You say that this is the life they chose? That they get paid good money for it? Besides, I'm not responsible for these men. This is America. They have the right to choose to play or not. Who am I to stand in their way?

True. But, what young man really thinks about their old age at 18 or 20? Or believes that in a few years they will have dementia? Or turns down big bucks now because in 10, 20, 30 years they may have major health problems? We make it much too attractive!

Ah, you say. We aren't doing anything. It's the NFL that makes it attractive. That pays the big bucks.

Yes, but would they pay those big bucks if the TVs stayed off and the stadiums were empty? What are YOU going to do? How are you going to vote? Will you vote for more dementia, or less? You vote one way or the other every time you watch or don't watch a football game. You can't opt out. You DO vote. How are you voting?

Reference: Decker R: Better helmets still not solution to concussions. Cronkite News. Arizona Republic. The Weekend. 12.31.16.

* Acronyms:
LBD: Lewy body dementia
CTE: chronic traumatic encephalopathy

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, December 30, 2016

LBD and Football

I boycott football. I don't watch it. I don't feel that I can work with people who deal with dementia and support a sport that causes it.

I tell this to people who start talking about football and they will usually nod. They've heard the statistics. "But it's the player's choice to be out there," they tell me. And, "The game will be played whether I watch or not," they say.

I say, "No, it is our culture's choice to lionize the game, to make it so profitable for the players, the NFL and the media. If we didn't watch, it would not be so attractive to our young men. Our boys would be less likely to want to play it in middle school, or high school."

I seldom convince anyone. They usually nod, and keep talking. But at least, I've made them think about what they are promoting.

They also tell me, "Yes, but, the NFL has changed a lot of rules and the repeated head injury trauma resulting in CTE* isn't as likely now."

But even with the new regulations, there were more concussions in 2015 in than in previous years. Besides that, nearly a third may not have been reported because during training camp and certain other times, injury reports aren't required. (Injuries are less dangerous if it they occur during training?) Also, concussions aren't always recognized until there is another bump that increases the first injury.

So why am I talking about this on my blog? Well, CTE is a man's disease...not because women can't get it but because they usually don't play such violent sports. Men are also at higher risk for LBD*. And so, as children or as young men, football players increase their already higher chances of developing LBD, or of developing it earlier than they otherwise would--in addition to any CTE they also develop. This is supported by a 2013 study that showed that CTE advanced the progression of Lewy bodies. That is, it doesn't cause LBD, but it sure can make it show up sooner and advance more quickly.

Now, we believe that LBD is caused by a combination of genetics and environment. That is, we all start out with a susceptibility to certain diseases.

If you have a family history of LBD, Alzheimers or other dementia in your family, you may have the genes for that tendency. That doesn't mean you will get it. That depends on the other half of the equation: the environment. You will likely never experience it...unless it is triggered by something like toxins in our air or food--or repeated head trauma.

Some of these we can control for. We can be careful of the insecticides we use. We can choose organic food. We can also choose the sports we play, and the sports we encourage our children and young men to play.

We have more power than we think. If we all turned off the TV set on football night--or switched the channel, what would happen? Why don't you try it and find out?

References:
Frontline. (2014) Shocking statistic: 96% of pro football players suffered from brain disease before death. October 1, 2014. RT Question More. https://www.rt.com/usa/192316-frontline-football-brain-cte/

Knowles B. (2016) 15 Shocking Statistics About Concussions in the NFL. The Sportster. http://www.thesportster.com/football/15-shocking-statistics-about-concussions-in-the-nfl/

Leung C, et al. (2013) Accelerated Protein Deposition in Individuals affected with both
Chronic Traumatic Encephalopathy and Lewy Body Dementia. Boston University.
http://www.bumc.bu.edu/enrichment/files/2013/01/leung-christopher.pdf

* Acronyms:
LBD: Lewy body dementia
CTE: chronic traumatic encephalopathy

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Saturday, December 24, 2016

Happy Holidays

 Jim and hope that all of our readers have a Merry Christmas and a Happy New Year. I am under the weather today, with a bothersome cold, at just the wrong time of the year (but is there a RIGHT time?) and so there won't be a blog this week.

Even so, we will be visiting with family on Christmas. We hope you all can get some family time in too. Remember though, keep it simple, no arguments, and lots of room for down time...for you as well as for your loved one!

Saturday, December 17, 2016

Holidays, Feasting, Families and Fun

Feasting is a common part of our holidays, starting with that turkey and all the fixin's at you probably had for Thanksgiving. Family can be a wonderful blessing but often our expectations outreach reality, especially at holiday times when we want everything to be perfect. And finally, what is “fun” changes as one’s body and responses to stimuli changes.

Feasting: While this can still be a part of the agenda, consider changes in the kinds of food and the times it is eaten. Holiday food tends to be filled with simple carbohydrates  (sugars, high fructose corn syrup and white sugar). It is becoming clear that these foods are not supportive of good health in general, and especially not of good cognition. Don't forgo these traditional foods entirely.
  • Just use smaller helpings and resist seconds. 
  • Then balance them with other more healthy foods that are also traditional, like fresh fruit, nuts, and winter vegetables like squash.
The proteins and saturated fats (think “animal fats”) that play a prominent part in holiday meals can leave a person feeling sluggish, fatigued and can interfere with normally effective medication. Dopamine and protein share “carriers” for crossing the intestinal wall and the blood brain barrier. Competition for these carriers will delay or reduce the medication’s effect. Meals that are high in saturated fat take longer to digest, thus delaying medication absorption.
  • Administer medication away from meal time, with a small amount of food to avoid nausea. 
  • Consider serving fish like cod or salmon, and using omega-3 fatty acids such as olive oil instead of saturated fats whenever you can. The omega-3s digest easily and fish digests in about half the time as it takes for other proteins.
Families, friends and socializing are important but they can also be huge triggers for stress. We all know that the person with a Lewy body disorder has a low tolerance for stress. So do their care partners, not because of the disorder but because caregiving is already stressful. When families come to visit, stress can occur when expectations end in disappointments, spending leads to financial pressures, or unresolved family-of-origin issues pop up. To limit holiday related stress:
  • Diffuse some soothing lavender or rosemary into the air. 
  • Practice deep breathing or add some soothing massage sessions, for you and your loved one.
  • Ask family members and visitors to focus on pleasant subjects and avoid anything that could lead to arguments.
Fun. The holidays are times of parties and family gatherings and activities that you may not do at any other time. As physical and mental abilities fail, these activities can become more stressful than fun. As a persons reactions to sensory sensations increase, certain activities can become not only stressful but can incite unwanted behavior.
  • Think ahead and find ways to adapt. Thinking ahead can make all the difference where fun is considered.
  • Instead of the traditional gathering and big meal at your house, consider ordering prepared meal or sharing the responsibilities with other family members. (Having it at your house is still a good idea because your loved one will be most comfortable there. Just make sure there is a quiet place somewhere for when things become too confusing.)
  • If you are used to doing something challenging after the meal, like board games, or distracting like watching an exciting game on TV, consider something else, such as reviewing old family photo albums.
Self-care. Above all, take care of yourself. If you are too stressed to enjoy the holidays, you loved one won't either.

  • Review your expectations and make them realistic, given your present situation.
  • Get adequate rest. Take a nap when your loved one does!
  • Limit your activities to what you know you can tolerate. 
  • Be willing to reach out and ask for help. 
  • Look for the little things to enjoy. 
  • Consciously think of the things that you are grateful for. 
  • Hug, smile and laugh. Enjoy!

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.

Friday, December 9, 2016

Making the Holidays Fun

This is a reprint from a blog several years ago. What it says is still true:

The holidays can be a difficult time for anyone with dementia. Change is scary and so as home d├ęcor changes, it adds tension instead of peace. Visits from family and friends can be overwhelming and tiring. For someone with sound and vision sensitivities, it can be even more difficult. Bright tree lights may be painful instead of fun. Loud music may be more stressful than enjoyable.

This doesn’t mean you should not celebrate nor that family and friends shouldn’t visit. Here are some tips to make your holiday season more enjoyable.

Strange places and too many people are both stressful. Therefore, forgo parties and large dinners that include your loved one. Instead, encourage family and friends to come visit—a few at a time.

Time visits for when your loved one is most alert. It is common for them to display “Showtime” (be unusually alert) with family, especially with those they do not see all the time. Enjoy this but expect them to crash and be very tired afterwards. Showtime is hard work!

Utilize respite care or adult day care to give you some free time for errands. If you do take your loved one out on an outing, plan ahead, avoid crowds, make sure it is something well loved, and don’t be gone a long time.

Play soft, soothing holiday music. Music has a different path to the brain and people can remember it when they can’t remember other things. Remember that music played too loud may be distracting and stressful.

Variety and change are no longer fun; sameness feels much safer and more comfortable. Therefore, don’t overdo the decorating. Keep your home looking and feeling familiar.

Get your loved one involved in the holiday preparations. Repetitious activities that are tedious for others are soothing for someone with cognitive impairment and can stroke feelings of accomplishment and pride. Enlist the help of older grandchildren and make this a family activity.

String garlands. All that’s needed is a long heavy thread and a darning needle. Try stringing cranberries, popcorn, even O-shaped cereal (Fruit Loops are cheerfully colorful). Extend the enjoyment by hanging edible garlands outside a window to attract birds.

Make paper chains. This takes some dexterity. It may be that a child can supervise while your loved one helps as able. Use construction paper, or even heavy foil wrapping paper.

Make pomanders. (aromatic balls) Stick cloves into oranges. These make lovely hangings or bowl displays and their scent may evoke calming, happy memories. Again, these require a little dexterity, but not much. Remember to throw them away after the holidays.

Crack nuts. Put your loved one to work with an old-fashioned nutcracker and a big bowl of walnuts, pecans and Brazil nuts. The ability to separate nuts from shells will depend on how much sequential ability is left. This may be another chore best done with a grandchild.

And finally, give yourself the challenge of matching the tempo of your loved one. Release some of that holiday generated stress by slowing down. Think about all the things you can leave undone instead of all those that need to be done.

Thanks to Independence4Seniors.com for many of these ideas.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.