The Huntington’s Disease Care Journey

By Rick Law of the Estate, Asset and Retirement Tax Law Firm at Law Elder Law in Aurora, IL.  The multi-generational law firm at Law Elder Law serves families in Western Chicagoland.

Huntington’s Disease (HD) causes brain cell atrophy, which eventually destroys memory, liver functions, and executive functions (such as organizing, prioritizing, controlling impulses, attention span and monitoring self-awareness). The current model of HD treatment and intervention is a battle to try to delay the progress of the disease.

There is no known cure.

The average age for the onset of HD is only 39.  After symptoms appear, the disease trajectory is a long 18-year decline. Absolutely heartbreaking.

At a conference a couple of years ago, I listened to lecturers who were outstanding medical and neuropsychological experts and learned some interesting facts about this devastating disease. HD may strike only 1 out of 10,000 persons, but it often affects 50% of the family members who are genetically vulnerable. Some of the speakers were victims themselves, and spoke about how they initially tried to deny their symptoms—trying to hide their involuntarily moving legs.  They spoke of the loss of their jobs, their friends, and often other family members.

Families of those with HD symptoms live with the terror of seeing their loved ones suffer, and their own fear that they too will get the disease.  For others, the disease has given them unique strength and perspective; one person boldly announced, “I am not dying of HD.  I am living with HD!”

Everyone agreed that persons with HD must exercise both the body and the brain to keep active and maintain a better quality of life.  In fact, one presenter praised the Nintendo Wii video game for keeping their adult son mentally and physically fit.  These same parents have found it fun and helpful to join their son by challenging him to various Wii Fit competitions.  They credit this video game activity with maintaining their son’s mental, motor, and physical health.  From one doctor visit to another the doctor has stated that their son’s decline has actually stopped!  The mom enthusiastically exclaimed, “What better way to spend time with your HD-affected loved one than laughing, playing, and challenging each other with Wii Fit.  You just can’t be too old to play the Wii Fit game. We wish that we had bought stock in Nintendo!”

If your loved one is facing a dreaded diagnosis and you’re afraid of losing everything to the cost of long term care, give our office a call today at 800-310-3100.  Your first consultation is absolutely free.  We’ll let you know what steps you need to take, right now, to protect yourself and your family.  Call now.

Sincerely,

Rick L. Law, Estate, Asset, and Retirement Tax Attorneys

8 times named the #1 Illinois elder law estate planning attorney by Leading Lawyer Magazine, Rick has been quoted in the Wall Street Journal, AARP Magazine, TheStreet.com, and numerous newspapers and articles. Rick is the lead attorney for Law Elder Law, LLP, focusing in Estate, Asset and Retirement Taxes. His goal is to give retirees an informed edge when it comes to dealing with an uncertain future.  Get flexible retirement strategies that work during good times and bad, plus information on how you can save your home and assets from being used to pay for long term care.  Call 800-310-3100 for your free consultation now!

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