Let Me Share Some Words of Wisdom on Huntington’s
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Sometimes it can seem like everyone wants to give you advice about how you should live your life or what you should do to feel and remain healthy. Now that I write this, you could say this column is doing the same thing! Here’s a quote that amused me:
“I’ll give you the same advice I give my children: Never take advice from anybody.” — Robert Altman, Esquire, March 2004
When something is new for you, such as a positive result on your Huntington’s disease (HD) genetic test, the opportunity to learn from others who have traveled a similar road can be helpful when it comes to strengthening your ability to cope and to feel less anxious. This column will describe three pieces of advice I received about how to live with HD that proved to be helpful. My hope is that they will be beneficial for you, or your loved one, as you travel along your Huntington’s disease journey.
Be a mouse on a wheel
Researchers have spent a great deal of time over the years looking for factors that may delay the age-of-onset for Huntington’s disease symptoms. Often in the scientific literature, they will refer to these factors as “biomarkers.” The only lifestyle modification that showed any possibility of pushing back HD symptoms to a later year is regular exercise. The data do not report that regular exercise will delay symptoms for everyone, every time. They demonstrate that there may be a correlation.
For that reason, regular exercise is something that is encouraged in the HD community, and it’s also one of the most significant pieces of Huntington’s disease-related advice I’ve ever received. It came from my neurologist at my initial appointment with him that followed my positive HD genetic test result. I try to remain active and exercise on a regular basis, although it can be a struggle if I’m in a battle with some depression or procrastination.
Live life for today
Although a great deal of hope and optimism surround the Huntington’s disease research and clinical trials that are currently active, there’s no escaping the fact that there is no cure for the underlying cause of HD. It is clearly understood that once the HD symptoms begin to take hold of a person, their health generally will begin to decline in a more predictable manner.
The second priceless piece of Huntington’s-related advice is to live life to the fullest. This is advice everyone should take, whether they have the HD gene mutation in their body or not, and I’m often reminded of this one by my wife, Michelle. Living in the moment and enjoying all the fascinating bits of life going on around you can do wonders for your sense of well-being.
For me, it’s my kids. Watching them grow and experience new things is such a joy for me. Whether it’s teaching my daughter to play basketball or building the tallest Lego tower on earth with my son (according to him, anyway) are highlights from my days. What are your highlights?
Knowledge is power
The final piece of Huntington’s disease advice that has been extremely important to my HD journey is that having knowledge about the condition provides you with power over it. When first introduced to HD, it can be an overwhelming and scary topic to learn about. It looks frightening. It sounds frightening. It can make you feel alone and condemned for the future.
Once you begin to gain knowledge of the illness, however, you quickly learn that there is so much hope out there today. Science is so close to an effective treatment for delaying the onset of HD. You learn that there is a community of individuals and families affected by Huntington’s disease who are there to support you. You learn about the services provided by organizations like the Huntington’s Disease Society of America and others that are there to benefit you directly.
For me, this last piece of advice was the most powerful. I learned everything I could, and I continue to learn whenever I can. This has been paramount in giving me control over HD.
Summary
So, there you have it. The three most important pieces of Huntington’s disease-related advice I’ve received:
- Be a mouse on a wheel.
- Live life for today.
- Knowledge is power.
These have been key for me, and perhaps you will be inspired by one or two of them. I know many other pieces of advice could be included, and everyone probably has a unique list. What’s on yours?
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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Wendy Beard
How can we in the US take advantage of the "right to try" law and utitlize the experimental therapies if not part of the trial?
Steven Beatty
Hi Wendy, thanks for the comment. I'm not an expert on the American right to try laws. I would suggest reaching out to the Huntington Disease Association of America for information on how the laws relate to HD. Here's their email: [email protected]. Thanks and good luck. Steve.
brigitte
All trials won't have positive results. At times some significantly adverse affects may occur to some participants. Not all animal testing can be extrapolated to humans meaning there may be on occasions unforeseen risks. The most constructive research options were they to be successful would need to occur in the earlier stages of the disease before more lasting severe damage has occurred. Hence with the earliest stages of this disease from just being diagnosed as gene positive it's not that bad waiting for the outcomes of some trials for verification that the proposed treatments cause no substantial harm and demonstrate significant benefits. Huntington's Disease in very early stages is not going to proceed as rapidly as many other diseases, hence less urgency to access a very novel trial or consider the right to try. With the slower paced decline in Huntington's occurring, the right to try scenario would need to have met the criteria of no harm and considerable proof of gains from treatments tested by prior trials. That's while currently none are ongoing and any ensuing treatment option has not yet established for the condition. This disease doesn't have a rapidly progressing rate of damage and death to justify the right to try anything that just may work somewhat. It is important that there are many who are willing to take part in any research trials for Huntington's disease, but it's fortunately one disease that it's less urgent to be amongst the first in trials and may be advantageous to be in later stages of novel treatments delivered.
Mike wooldridge
Are you the same Steve Beatty who book i read recently.
I agree live each day to the full.
Steven Beatty
I wrote the book "In-Between Years: Life after a positive Huntington's disease test", yes! Thank you for reading!
brigitte
You are amazingly spot on in what you said, the way you live, the key principles you use to live by. I would just add that those who are spiritually inclined that they could add keeping the faith with your three parts starting from mouse on wheel etc..By the way everything I've read that you have written here so far is brilliant and constructive re living with being gene positive, early stages etc..
Steven Beatty
Thank you Brigitte, I appreciate the comment and feedback very much!
Gustina Thompson Esumike
How do you get things for your parents such as a necklace or a wristband to inform the law enforcement