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Holiday Gifts and Nifty Gadgets for People with Mitochondrial Disease

Question: 

I think that it’s safe to make a generalization: everyone reading this article has come in contact with someone who, no matter how much you do to try to help them understand Mito and other chronic illnesses, just don’t “get it.”  They listen to your explanations, glance at pamphlets or websites that you provide, smile, nod, smile some more.  However, their holiday gifts to you speak volumes.  Pajamas, more pajamas, exercise video (hint), pedometer (hint hint), jars and bottles of lotions and shower gels in dozens of fragrances so strong that your eyes water even before the wrapping paper is removed completely.  Oh, and don’t forget the six month gym membership and the DVD series about “thinking yourself healthy!” (sigh)  Sometimes the best course of action is to smile, graciously accept the gift/hint, and relegate it to a closet, at least until it can be re-gifted to someone who can use it.  In the meantime, here are some great gadgets and gizmos that you might want to give to yourself:   

Answer: 

www.airdesks.com   People who spend a significant amount of time in bed or seated in a reclined position realize how difficult it can be to find level, accessible surfaces for writing, eating, drinking, or using a laptop.  The tray table that is convenient while reclined is in danger of being knocked over if you raise your head, while the tray table that is perfect for writing a note while you are sitting upright may not even remain in your line of sight when you recline to rest.  Adjustable power chairs make position changes much easier, but using a standard table or desk is usually close to impossible.   AirDesks.com provides a unique solution; by attaching highly-adjustable support arms and platforms to a sturdy central pole, you can position your laptop, telephone, cold drink, and other items for easy access. The large, solid circular base is heavy enough to provide counterbalance for your electronics and other items, but is light enough for the entire stand to be disassembled and stored, or transported to and from work or school.  

http://www.dynamic-living.com/product/angled-glasses-bed-spectacles/#clear  Have you ever wanted to watch a bit more television but your body just couldn’t support itself for another minute?  These eyeglasses operate under the same principle as toy periscopes, with prisms changing the angle of light’s path so that you can have a clear view of the television while lying flat in bed.  These lightweight glasses fit comfortably over regular prescription lenses.

http://www.sightconnection.com/ultracleartvampsystem.html  If you have an irregular sleep schedule due to chronic pain, you may find yourself watching television in the middle of the night.  A wireless TV headphone system will enable you to watch and listen without bothering anyone else in the room.

http://www.amazon.com/Carlon-HW2162-Wireless-Socket-Switch/dp/B000LNMTUA   Many people with Mito and other neurological conditions are caught in a double bind: bright room lights can be annoying or even painful, but night vision is impaired, making it unsafe to move around in a darkened room.  This wireless light switch comes with an adapter that screws into a light socket, and then a regular light bulb is screwed into the adapter.  This allows you to turn the light on and off with the handheld switch, just as you would activate a garage door opener as you pull into your driveway.  The result is a lamp that you can control from anywhere in the room. 

http://www.lowvisionchef.com/bnesiexovmib.html  If you have Dysautonomia, you may have altered skin sensation, possibly even lack of sensitivity to heat or cold.  Therefore, it is very important to protect your hands and arms while handling very hot or cold items.  This elbow-length oven mitt is made of neoprene for extra insulating power.  While most oven mitts are “cookie cutter” shaped with the thumb on top, these mitts are designed for safer gripping by placing the thumb folded in, opposing the palm, and are coated with a textured material for traction.Top of Form

http://www.chillowstore.com/  If you experience temperature fluctuations while asleep, this pillow can help.  The Chillow cooling pad helps you sleep comfortably during the night by maintaining a cool surface on your pillow.  The Chillow is also available at Walgreens.com.

http://www.epill.com/timecap.html This special medication cap keeps track of the time span between doses of medication, letting you know how much time has passed since the last dose was taken.  This cap is most helpful for people who take medication as needed, such as pain meds, but need to make sure that the doses are spaced a minimum amount of time between doses.  

Xylitol Gum and Mints  Many medications, illnesses, and treatments can cause xerostomia, or dry mouth.  People with dry mouths are much more prone to tooth decay, mouth ulcers, and infections like thrush.  According to WebMD,Xylitol tastes sweet but, unlike sugar, it is not converted in the mouth to acids that cause tooth decay. It reduces levels of decay-causing bacteria in saliva  and also acts against some bacteria that cause ear infections.” 

Cereal for Dinner: Strategies, Shortcuts, and Sanity for Moms Battling Chronic Illness by Kristine Breese.  Cereal for Dinner is more than a book to me…it’s a mission.  Over the past ten years, I have purchased at least 25 copies of this book and mailed them to “Mito Moms in Need.”   Every Mom that received a book had the same response:   “This book gave me exactly what I needed to hear at exactly the right time.”  Kristine Breese was a 35 year old Type-A, multi-tasking, marathon running, Supermom of two young children who suddenly went into heart failure and collapsed on her bathroom floor.  Before she knew what hit her, she was whisked in for emergency heart surgery, and went home with a new life: the life of a Mom with a chronic illness. 

This book spoke to me powerfully when I first read it and it still speaks to me today.  The following excerpt reveals a glimmer of this masterpiece created by and for Moms like us:

“The folks at the FAA must have had mothers in mind when they drafted the directive that instructs adults to secure their own mask before that of their kids in case of emergency.  While our instincts when flying on a distressed airplane might be to grab the mask and put it first on our child, there’s a chance that would take too long and then we would be at great risk and potentially no help to anyone on the plane, including our child.  But while it’s common sense, it contradicts a mother’s instincts about how to react.  Could we really do as instructed when push came to shove? Can we do this when our health is at stake?”

“When dealing with health and sickness, life and death, it’s more than just a figure of speech that you can’t take care of others if you’re not taking care of yourself.  For in matters of health, conditions left untreated typically worsen.  Whether it’s ignoring a scratchy throat and pushing ahead with an overscheduled weekend, or rescheduling your mammogram because your daughter’s teacher has asked you to decorate the classroom for Valentine’s Day, mothers ignore the small signals, warning signs, and preventive measures at their own peril.”  Breese, K; Cereal For Dinner; 2004; St. Martin’s Press; New York, NY; pp8-9.

 

Cereal for Dinner can be purchased on Amazon, Barnes & Noble, Macmillan.com, and on Kristine Breese’s website: http://www.kristinebreese.com/cereal.html.