• Leanne Delong

Huntington's Disease and climate change. Does it have an effect?

Believe it or not there are still a few people that scoff at climate change, however the purpose of this article is not to debate opinions, or science, for that matter.

For the past several years, American cities have been inundated with heat advisories and this year, for the first time, Canada was hit by record breaking heat of over 100 degrees Fahrenheit in all ten provinces, from the Atlantic provinces to the Pacific coast, all at the same time.

It is estimated that in Europe, the extreme heat caused over 70,000 deaths last year alone. The bulk of the deaths from this heat were mainly from young children, the elderly and other vulnerable persons.

Anyone in the HD community and those that are close to us know that stress is something those with HD need to avoid, if at all possible and many people in our community do not realize that extreme temperatures are a direct stressor and can cause symptoms of HD to be amplified and may even cause the condition to worsen, especially if the patient becomes dehydrated.

According to the UC Davis Medical Centre, persons with HD are prone to dehydration for a number of reasons, including cognitive impairment, making it difficult for the person to realize they are thirsty, motor abnormalities and chorea, and difficulty swallowing,

If the patient is tube fed, it may be necessary to increase the water intake portion of the feeding. In my wife Sheila's case, they increased it when they saw that she was sweating excessively. She is monitored very well, but caregivers or those responsible for someone with HD should also check to make sure the patient is not overlooked.

UC Davis offers important tips and information to help us identify dehydration and how to avoid it:

How to tell if someone is dehydrated:

 Increased Heart Rate

 Dry Mouth

 Concentrated Urine (strong yellow color)

 Voiding less frequently during the day than normal

 Poor tear production

As dehydration worsens, symptom can become more severe, causing:

 Decreased skin turgor

 Minimal to no urine production

 Sunken eyeballs

 Decreased blood pressure

 Delayed capillary refill

 Change in mental status (confusion, delirious)

How to prevent dehydration:

Remember that a person with HD may not ask for fluids or tell you they are thirsty, therefore caregivers, family and friends need to anticipate this need and plan accordingly.

 Always have fluids available when not at home. (i.e. water bottles, sports bottles, etc)

 Drinking water is the best source of fluid for hydration. Drinks with caffeine can actually make dehydration worse. Sports drinks that have replacement electrolytes are generally not necessary, but can be used if there is a personal preference.

 When at home, always have fluid within reach of the person with HD. Remind them frequently to drink their fluids. Eight ounces every few hours during the hours they are awake should be adequate. Increase this amount for people who already sweat a lot and when the temperature rises.

 During extreme weather days, stay indoors, preferably in air conditioning. If outside activities are essential, try going outdoors in the early morning hours as it is generally the coolest part of the day.

 If you are unsure if the person with HD is getting enough fluid, start keeping a log of fluid intake. Include every time they drink and how much is consumed; total the amount at the end of the day. They should be getting 80-100 ounces in a day, increased to 150- 160 ounces in extreme weather.

When to seek medical attention for dehydration:

 A change in mental status (confused or delirious)

 Unable to drink or take things by mouth

 Change in vital signs (increased heart rate, decreased blood pressure, increased temperature)

Many in the HD community may not have adequate ventilation in their homes as well as air conditioning due to financial stress as well. People who are aware of families where this would apply should offer assistance to get to a cooling station to give relief.

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