Supplements

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Algorithms

Vocabulary

HDSA 

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Locate Resources

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SSA Disability

Nutrition

Food Pantries

Homeless Shelters

SNAP

Suicide Hotline

Dr. Lange

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Audio Bank

Nutrition

Nutrition is essential for every HD/JHD patient!

The Huntington's Disease Society of America (HDSA) has provided vital information about nutrition for Huntington's patients. Please review the information to better understand the necessity of proper nutrition. 

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• Nutrition in HD/JHD

• Helpful Kitchen Tools

• How to Increase Calories

• Nutrition and each stage of the disease.

• Downloadable documents

 CAG Information

CAG / Age of Onset and Environmental Factors

A new model for prediction of the age of onset and penetrance for Huntington’s disease based on CAG length

Measurement of Mutational Flow Implies Both a High New-Mutation Rate for Huntington Disease and Substantial Underascertainment of Late-Onset Cases

Early Diagnosis of HD

Nutritional Supplements 

Nutritional Supplements 

Treatment Algorithms 

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• Symptom Survivor Guideline

• HD Obsessive-Compulsive Treatment Algorithm: 

       Patient and Family Summary  

• HD Irritability Treatment Algorithm: Patient and Family Summary & Flow Chart

• HD Chorea Algorithm: Patient and Family Summary & Flow Chart

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PLOS Complete Documentation:

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Algorithm for the Pharmacologic Treatment of Obsessive-Compulsive Behaviors in Huntington’s Disease

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Algorithm for the Pharmacologic Treatment of Irritability in Huntington’s Disease

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Algorithm for the Pharmacologic Treatment of Chorea in Huntington’s Disease

HD / JHD Vocabulary

Striatum: Part of the brain that is involved in controlling movement. It is made up of the caudate and the putamen and also referred to as the corpus striatum.

Chorea:  The term “chorea” comes from the ancient Greek word “choreia,” which means dance. Chorea is characterized by brief and abrupt movements that are irregular and unpredictable. These movements often seem to flow from one body part to another, but they also can be confined to a single area in the body. They can interfere with swallowing, speech, posture, and walking. Chorea often leads to clumsiness, which causes the person to repeatedly drop objects. People who are not familiar with chorea also describe the movements as restlessness or fidgeting.

*Twitching, muscle spasms, tics

Akathisia: Is characterized by a subjective feeling of inner restlessness accompanied by mental distress and an inability to sit still. Usually, the legs are most prominently affected. Those affected may fidget, rock back and forth, or pace, while some may just have an uneasy feeling in their body.

Bradykinesia: Difficulty initiating and continuing movements -  slow-moving.

Dystonia: Sustained involuntary muscle contractions, a bit like chorea but lasting longer which has a high incidence both in juvenile cases and throughout disease progression. Types of dystonia: prolonged muscle contractions - shoulder rotation, fist-clenching, excessive knee flexion, foot inversion, face, neck, and back.

Rigidity: Stiffness or tenseness of muscles.  The inability to bend or be bent.

Myotonia: Frequent spasms of the muscles.

Dysphagia: Is the difficulty or inability to swallow. It is often responsible for the potentially lethal respiratory events of aspiration or asphyxiation in Huntington's disease. 

Anosognosia: Is the medical term for a lack of self-awareness of one's own disability or disease symptom. This condition, which is different from denial, occurs in many brain diseases including Huntington's disease (HD). Anosognosia is caused by nerve circuit damage to brain structures that interpret and organize information. Lack of awareness in HD creates problems that can range from the refusal of therapy: "I don't need treatment if I'm not ill" to more extreme situations that can be dangerous for HD individuals or others. Families know that dealing with this symptom when it is severe -- is like walking through an emotional minefield, knowing the explosion is likely to come. - HDDW

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Sepsis - Sepsis is a life-threatening illness caused by your body’s response to an infection. Your immune system protects you from many illnesses and infections, but it’s also possible for it to go into overdrive in response to an infection. Sepsis develops when the chemicals the immune system releases into the bloodstream to fight an infection cause inflammation throughout the entire body instead.  Learn more about Sepsis

"For many caregivers of people with HD, there comes a point where caring for your loved one at home is no longer possible. This can be due to many reasons, including being unable to dedicate the time to care or coordinate care for your loved one, being unable to manage the complex needs of caring for your loved one, or being burnt out from the caregiving process. It is at this point that many people start looking into the option of placing their loved one in a long-term care facility. Click the links found on this page for guidance and resources. For more information on long-term care or to be connected to local resources, please feel free to contact the HDSA National Helpline (800) 345-HDSA, or email the HDSA directly -  hdsainfo@hdsa.org."

"If someone you care about has been diagnosed with Huntington’s disease (hd), this guide has been written for you. In these pages, we will cover some of the major symptoms of hd and how the symptoms will change over time. We will also offer suggestions and strategies for coping with the daily challenges presented by hd. We have drawn from the experiences of countless other hd families and the medical professionals who serve them. As a caretaker, you have an essential role to play in your loved one’s life and care. This guide was developed to help support you during the journey that is hd." - HDSA

Get the most accurate information about SSA Disability!

For accurate information about the SSA disability process, reach out to Allison Bartlett directly at abartlett@hdsa.org

Allison Bartlett – HDSA’s Disability Expert 

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Watch WeHaveAFace TV Episode with Allison Bartlett!

Aam Hubers: "Published studies suggest that suicide is 2-8 times more common in HD than the general population. HD patients thoughts of suicide seem to occur at a stage when they are losing their independence and becoming more dependent on care. Because existing information was sparse, Hubers set out to study a large number of HD patients across time to understand suicide in HD. Hubers wonders - what factors lead to HD mutation carriers thinking of, or attempting, suicide? About 20% of HD mutation carriers studied by Hubers, whether or not they have symptoms of HD, thought of suicide in the last month. The studies Hubers is conducting suggest that HD patients who report being depressed seem to have higher risk of suicide. Hubers recommends HD patients with depression should be carefully watched for signs of thinking of suicide, based on increased risk." Via HDBuzz  - World Congress 2013.

You are not alone! You are important! Please reach out and call the National Suicide Prevention Lifeline! Living with Huntington's disease is very difficult, but you are important! Reach out to a loved one or the hotline!