Adaptive Ski Day

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The National Ability Center in Park City, Utah is a place where many people have their best day ever.  This center is a global leader for adaptive recreation, serving individuals with a wide range of disabilities.  The National Ability Center empowers individuals of all abilities by building self-esteem, confidence and lifetime skills through sport, recreation and educational programs.

Amy Christensen appreciates that the National Ability Center also focuses on having families do activities together. Last winter she taught her youngest son to ski.  This opened the possibility for Amy to ski with all four of her children.  But her eight year old daughter wanted her dad to ski with them too.  She had seen someone at the ski resort skiing in an adaptive ski chair and had said, “My dad could do that.”  

Seth Christensen had been diagnosed with ALS, or Lou-Gehrig’s disease,  when his two youngest children were 8 months and 3 years old.  Four years later his legs weren’t strong enough to ski anymore.  He hadn’t ever skied with his whole family, so he couldn’t say no when his daughter asked.

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The National Ability Center gave a scholarship for Seth to use their equipment and ski for the day with his family.  At the end of their ski day together, Seth and Amy’s youngest son climbed up into Seth’s lap and said, “Wasn’t that the best day ever Dad?!”

And that is what it’s all about.

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The National Ability Center can specifically serve individuals based on their abilities and limitations.  Because of its ideal location within minutes of Park City’s three ski resorts in the winter, and two lakes and miles of outdoor trails in the summer, participants and their families can register for the following activities:

  • Alpine Skiing
  • Nordic Skiing
  • Snowboarding
  • Aquatics
  • Archery
  • Biathlon
  • Challenge Course
  • Cycling
  • Horseback Riding & Therapy
  • Rock Climbing
  • Sled Hockey
  • Water Sports

 

Since 1985, the National Ability Center has grown to serve more than 3,000 participants annually through over 18,000 adaptive recreation experiences. They are able to serve individuals with a wide range of disabilities, including orthopedic, spinal cord, neuromuscular, visual and hearing impairments, as well as cognitive, emotional and developmental disabilities. Participants come from all socioeconomic backgrounds and range in age from young children to senior citizens.

For more information about the National Ability Center, see their website: http://www.discovernac.org

To ALS Patients: Put on Some Pounds

Most patients with ALS are encouraged to gradually gain weight.  Yes, you read that right.  It is important to prevent weight loss which could cause further muscle breakdown.  Weight gain is recommended at a gradual pace, about 1-2 pounds gained per month until Body Mass Index (BMI) is in the 25-30 range.  For a six foot tall 40 year old male, that would mean he would want to gain until he reaches about 220 pounds and then try to maintain that weight. 

BMI is calculated by height, weight, and age and can be done easily with an online tool like smartbmicalculator.com.  

For a person with ALS, there are many variables that affect how many calories they need each day.  Muscle fasciculations can burn more calories than another person at rest.  However, over time, decreased physical activity can mean less calories needed.  Difficulty swallowing can also cause patients to not get enough for their needs.

Food needs will change over time.  It is important to re-evaluate how many calories are needed and make sure that those needs can be met.  If a person with ALS is not eating enough calories to meet their needs, the body will begin to breakdown fat and muscle tissues, which is the last thing an ALS patient wants.

Here are some tips and tricks to maximize eating for ALS patients who can still swallow fairly well:

  • Eat small frequent meals
  • Drink some of your calories (juice, smoothies, whole milk, or soymilk)
  • Eat softer foods
  • Nap before meals so you’re not too tired to eat
  • Eat lots of calories during the earlier part of the day if you tend to get too tired to eat later in the day
  • Limit foods that take a lot of energy to chew (steak, salad, celery)
  • Don’t fill up on low-calorie drinks like water, tea, and coffee
  • Eat foods from all food groups, try to keep a good balance
  • Avoid diet versions of foods, choose original full fat foods instead
  • Increase portion sizes 

It is important to realize that it is just as difficult for a thin person to gain weight as a heavy person to lose weight.  It will take work and consistent effort to see a gradual healthy change.  Here are some calorie rich foods recommended for weight gain.  Many of these can be added onto regular foods, for example, add nut butter into your cereal.  Add guacamole or hummus spread into sandwiches.  Eat what sounds good and experiment with adding more of these:

  • Nuts
  • Seeds
  • Peanut butter
  • Dark chocolate
  • Sesame butter
  • Whole wheat crackers
  • Cheese
  • Eggs
  • Fish
  • Meat
  • Raisins
  • Dates
  • Whole wheat bread
  • Dried apricots
  • Coconut milk
  • Avocados
  • Brown rice
  • Oatmeal
  • 100% fruit juices: grape, pineapple, apple, orange

When calorie needs cannot be met any longer with regular food by mouth, it is recommended to use a feeding tube to supplement calories.  This difficult milestone is a topic for another day, but important to maintain weight for a person with ALS.

To view a one hour NEALS Nutritional Intervention webinar from March 4, 2016, go to this link: https://vimeo.com/157773402 presented by 

Edward J. Kasarskis, M.D., Ph.D.

Anne-Marie A Willis, M.D., M.P.H.

Jane L. Hubbard, M.S., R.D., L.D.N

An Environmental Cause for ALS?

What does a map plotting patients with ALS look like? One such map shows that lakes with cyanobacteria, or blue-green algae, may be linked to  ALS.

Dr. Elijah Stommel and Dr. Tracie Caller of the Dartmouth-Hitchcock Medical Center found that people living around a freshwater lake that has frequent blooms of cyanobacteria are up 25 times more likely than the general population to develop ALS.

Cyanobacteria is a life form, closely related to regular bacteria, that lives in water.  The cyanobacteria can multiply under the right conditions and create a whole colony that can turn clear water into cloudy water with blue-green or even reddish-brown algae or scum.  The water may have a thin “oily” film similar to what a paint spill may look like.  Fortunately, a bloom with a high population of cyanobacteria cannot survive for very long.  They typically die after one or two weeks.  Another bloom can replace the first one if water conditions remain favorable for growth.

Some cyanobacterial blooms are not toxic, but some produce BMAA, a nerve toxin that can affect the brain.  A report in the Proceedings of the British Royal Society published on Jan 20, 2016 shows in animals that chronic exposure to the toxin BMAA from cyanobacteria causes “brain tangles,” which can lead to ALS related symptoms and other neurodegenerative illnesses.

Lead author of the study, Paul Cox, Ph.D. is the Director of the Institute for Ethnomedicine.  His current research is focused on neurodegenerative illness with the goal of discovering new therapies for ALS.  

The recent publication also shows that large doses of the dietary amino acid called L-serine can reduce the risk of BMAA exposure.  The L-serine works by “outcompeting” against low levels of BMAA in the body, preventing it from becoming incorporated into proteins.  The study was conducted on vervet monkeys, not humans, but offers reasonable proof of the BMAA link, which has been suspected before.

ALS is likely the result of a combination of several factors, that when they run together, create certain symptoms in the body.  It’s like creating the perfect storm.  This environmental neurotoxin BMAA seems to be one of the contributing factors.  Finding one causative piece of the ALS puzzle helps move forward to the cure.  
The scientific BMAA publication can be found here:Dietary exposure to an environmental toxin triggers neurofibrillary tangles and amyloid deposits in the brain