Tag Archives: chronic

Living with HD: Treat Your Brain to a Spa Day

Posted on by CVCinfo

We spend a fortune every year on clothing, buying the right foods, beauty products, and other things to take care of our physical bodies.  Huntington’s Disease certainly wreaks havoc on our physical well-being, but it is a neurological disorder.  When was the last time that you did something nice for your brain?

There are many things that you can do to help you deal with HD and improve your ability to function.

If you or a loved one has been diagnosed with HD you will be dealing with stress.  There is the stress over whether or not you’ve passed on the gene, the stress about your prognosis, and the stress about what your level of care will be.  A leading cause of death for HD sufferers is heart failure.  A major contributor to heart-related issues is, you guessed it, stress.  Evaluate how you deal with stress.

Verbalizing what is causing stress can become difficult.  Woody Guthrie was probably the most famous sufferer of HD.  As his symptoms became more advanced, his wife designed a series of flash cards to facilitate their discussions.  She presented him with a series of words and images that he could choose from to communicate his feelings.  In addition to “yes” and “no” he was given the option of a face showing a smile or a face showing a frown.  He could sort through the cards to better express what he was feeling.

HD brings with it a loss of control.  Many will present with “anosognia” which is a lack of awareness of one’s condition.  A patient with anosognia may still seem to be functioning at a relatively high level but be oblivious about things like communicating feelings, about personal hygiene, or about eating.

Someone in the early stages of HD may be unaware of their hunger or lack of suitable food.  As the disease progresses they may find it difficult to swallow, or medications may make calorie absorption a problem.  If you have HD, you get a free pass when New Year’s resolutions come around.  You get to go on a Reverse-Diet.  Increase your caloric intake!  A diet high in protein has been shown to slow the deterioration of cognitive ability.  Many of the physical aspects of the disease (chorea, spasms) also cause HD patients to burn calories at a very high level.

The posturing and chorea that comes with HD can make daily activity a chore.  Many report that trying to remain motionless is an exercise in futility.  For an exercise in non-futility, try to establish a good walking regimen as soon as possible.  HD sufferers have reported that walking eases some of the physical symptoms of the disease, it has therapeutic benefits in dealing with stress, and it’s good exercise for the heart!  People who’ve done this have also reported better sleeping habits.

Life can be difficult without a good night’s rest.  Lack of sleep leads to fatigue, higher levels of stress, confusion, moodiness, and loss of coordination.  Does this sound like Huntington’s?  Chorea, a poor diet, and stress can all rob you of valuable rest.  Instead of looking at this as a revolving door of issues, tackle it head on.  Talk to your doctors about medications that will help lessen the physical effects.   Your doctor may also prescribe something to help you deal with stress or depression.

Finally, a spiritual approach.

Studies have shown that Buddhist monks have the ability to regulate breathing, heart rate, and now brain activity, through the use of meditation.  Monks who have trained for a number of years showed neural activity that was considerably more responsive and synchronized than the scans of people who had never practiced.

We’re not suggesting that everyone become monks, but 15 to 20 minutes of practice per day can’t hurt.  All that you need is some quiet, and a cue to clean your mind.  Some use a chant, or “mantra”.  For some it is a visual cue, like a candle.  For some, it is the image of a river.  You just allow your thoughts to flow down the river.  It is very easy to get caught in a pool or eddy, but concentrate on flowing down the river.

So get creative about verbalizing your stress, and feed your brain with good proteins.  Use social interaction to give it a good workout, and meditation to give it a good rest.  Treat your brain to a Spa Day!

 

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The Power of One: Pulmonary Hypertension Month

Posted on by CVCinfo

According to the American Lung Association, there are an estimated 300 new cases of Pulmonary Hypertension each year, and there are over 160,000 hospital discharges in which it was one of the diagnoses.  It can affect anyone at any age, but is most common among young women.  25 years ago there were no treatments and the average life expectancy from diagnosis was 2.8 years.

We’ve come a long way.  While there is no cure, there are a variety of treatments that can prolong and improve quality of life in patients.  Better yet, there is a great deal of research into new ways to treat and possibly cure the disease.  The University of Wisconsin is one of 14 facilities participating in phase II clinical trials investigating the use of adult stem cells to treat arterial blockages.  This could lead to breakthroughs in treating PH.  And researchers at NIH are working with a gene that they call the “resilience gene” which adjusts potassium levels that allow people to react to stress.  Could this be a cure for stress-related blood pressure issues?

If you or someone that you know has PH, this is your month!  The theme for this year is “The Power of One”.  The power of one person to exhibit courage and bring about change.

Last year saw groups all over the country lending support and raising funds and awareness in ways both large and small.

 

PH is rare but is still quite serious.  Many doctors have great experience with cardio-pulmonary related diseases but little exposure to PH.  The Pulmonary Hypertension Association has a great list of professionals that can give you the specialized care that you need.

Living with PH is going to require some lifestyle changes in addition to medical treatment.  Some have added a bar stool to the kitchen for resting while cooking or cleaning.  Some have given up salt in favor of garlic.  There are a variety of ways that you can ease your daily stress.  Did you know that most Sanitation Departments offer a service that will pull your trash to the curb for you?

Medications are also a cause for concern.  3% of all hospital visits are the result of medication errors.  Be clear with your doctor and pharmacist.  Keep a note pad for questions and concerns.  Keep your medications in their original bottles, and have your medical information handy.  Be your own best advocate.

Use this November to raise your voice and be heard!  Pulmonary hypertension is a serious, chronic, life-threatening condition.  It is not, however, a death sentence.  The Power of One voice can combine with many to create a beautiful racket as we work towards better treatments and eventually a cure!

 

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Support Resources & Community for Caregivers

Posted on by CVCinfo

Two Richmond-Based Organizations Partner to Offer Support Resources & Community for Caregivers

Lift Caregiving and the Caring Voice Coalition, Inc. (CVC) announced a strategic partnership that will expand the reach of free resources for family caregivers.

From free articles, assessment tools and access to experts, the functionality of liftcaregiving.com provides a comprehensive and actionable resource that was designed with the overwhelmed caregiver in mind.

The announcement represents an expansion of Lift Caregiving’s non-profit partners, including those with the Alzheimer’s Association of Greater Richmond; The American Red Cross, Virginia Capital Region; the Better Business Bureau; the Older Dominion Partnership; the United Way of Greater Richmond & Petersburg; and Virginia Commonwealth University.

“Lift Caregiving is proud to be working with such an impressive organization. CVC’s work improves the lives of people across the country everyday, and we are grateful for the opportunity to offer our resources to their network of patients,” said Ted Ukrop, co-founder of Lift Caregiving.

Taylor Scott, Marketing Manager for the Caring Voice Coalition, adds, “CVC’s financial assistance and patient support services have helped improve the life situations of our patients. We believe that our partnership with Lift Caregiving is an important way that we can expand our network of support and provide much needed resources to the family members and loved ones caring for our patients.”

About Lift Caregiving:
Lift Caregiving is dedicated to positively changing the lives of family caregivers by offering them a holistic, content-rich resource that is helpful, actionable and easy to use. Founded in 2010, the company is headquartered in Richmond, VA.

About the Caring Voice Coalition:
Caring Voice Coalition, Inc. (CVC) is a national 501(c)(3) non-profit, charitable organization established in 2003 to provide financial, insurance education and personal support to individuals diagnosed with specific chronic or life-threatening diseases. CVC seeks to empower these patients by providing comprehensive programs delivered through a holistic approach by a staff of knowledgeable, dedicated and caring individuals.

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Take Care, Caregiver

Posted on by CVCinfo

We found this article so incredibly helpful. From our friends at Pulmonary Hypertension Association:

As a caregiver for someone with pulmonary hypertension, you spend a good deal of your time thinking about someone else. When your day-to-day concerns are tied to someone else’s comfort, it’s possible to put your own physical and mental health on the back burner.

While you may feel as if you don’t have time to tend to your own needs, the truth is that the most effective and supportive caregivers are those who also take time for themselves. Read over the tips below to make sure you’re giving yourself the attention you deserve.

15 Tips to Help You Care for Your Family Yourself

  1. Eat smart and exercise. You’ll be surprised at the energy you’ll gain from choosing nutritious foods and finding time for some daily physical activity.
  2. Get plenty of rest.
  3. Be kind to yourself. Give yourself credit for what you do.
  4. Set realistic goals and expectations.
  5. Cut yourself some slack. Nobody’s perfect. Even the best caregivers occasionally find themselves getting impatient, stressed or frustrated. Learn to think about these feelings not as evidence of your failure but as cues that you need some time to yourself.
  6. Schedule “me time.” Caregiving is a job and rest is your earned right. Reward yourself with respite breaks often.
  7. Set limits and let everyone know what they are.
  8. When people offer to help, accept the offer and suggest specific things they can do.
  9. Watch for signs of depression, and don’t delay in getting professional help when you need it.
  10. Grieve your losses, and then allow yourself to dream new dreams.
  11. Learn what helps you relieve stress – keep a list and use it. Try walking, reading, listening to music, take up a new hobby, or take a nap!
  12. Remember your spiritual health. You can make good use of your own spiritual beliefs to cope during difficult times. Many caregivers find great solace in meditation, prayer or time spent in nature.
  13. Share your feelings with family and friends.
  14. Seek support from other caregivers. There is great comfort in knowing that you are not alone. Talk with other caregivers at PH support group meetings, and try to arrange for a caregiver support group to be held at the same time as your local patient group. Also be sure to sign up for our email group for caregivers and other family members of PH patients. Join PHA Caregiver now (Requires a free Google account. Please allow a short delay while your group membership is processed.)
  15. If it gets to be “too much,” talk to your doctor, another healthcare professional or a member of the clergy.
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