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

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?

Frontline. (2014) Shocking statistic: 96% of pro football players suffered from brain disease before death. October 1, 2014. RT Question More.

Knowles B. (2016) 15 Shocking Statistics About Concussions in the NFL. The Sportster.

Leung C, et al. (2013) Accelerated Protein Deposition in Individuals affected with both
Chronic Traumatic Encephalopathy and Lewy Body Dementia. Boston University.

* 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 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.