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History

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4 people a day are diagnosed with Huntington's disease


The earliest recognition in history of HD was in the 16TH century. Thatís when Paracelsus, a scientist saw the signs and called HD, Chorea. In that decade, in the United States it was know as "Saint Vitusī dance" It was recently discovered that people with HD in Salem, were the witches they hunted. A break though in 1840ís medicine noticed it was genetic, and they renamed it "chronic hereditary chorea." In 1872, George Huntington, who it is currently named after, did really groundbreaking research on HD. In 1910 they figured out about the brain detriotation. Then in 1970, they discovered that cells in the body die too. In 1987, they find the gene, thatís when they started doing predictive testing and pre natal scanning. In 1993, they found the CAG repeats.If we have a later onset the symptoms will be less. If early, like my family they come severe and fast. We are born with the Huntington's Gene. It kicks in for people that have HD. Never skips generations.

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Information about Huntingtonís Disease

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It is a genetic disorder that causing the dying of brain cells, called neurons, in certain areas of the brain. The mutant Huntington enters the nucleus, it gets trapped, and can't escape. That leads to the dying of brain cells. It also stops messages, from the neurons. The Rhyes Protein, sticks to HD and causes damage, to the part of the brain. This causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. It is passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to next generations. A person who inherits the HD gene will sooner or later develop the disease. Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have trouble feeding and swallowing. The rate of disease progression and the age of onset vary from person to person. .Presymptomic testing is available for individuals who are at risk for carrying the HD gene. The faulty gene 4 is found if you have it. HD gene is also a dominate gene. HD usually progresses over a 10- to 25-year period. Symptoms generally appear between 30 and 50 years of age, but have appeared as young as 2 and as old as 70. 1 in a 10,000 will get it, in Canada. It is the most common gentic disease. There are 3 common ways to die from it. Sadly, suicide attempts are the number one. The second is infections. The body gets so weak and exposed they are very easy to get. Dysphagia is another cause. It is when the person suffocates or chokes,or indirectly from starvation. Since in the final stages they can't eat. They might fall and die too.If you drink and do drugs it effects you horribly. An HD brain is running at 70 percent of brain usage. If you use, you have 15 percent left.

Stages of HD

Although symptoms of HD vary from person to person, even within the same family, the progression of the disease can be roughly divided into three stages.

I am here. Early Stage HD usually includes subtle changes in coordination, perhaps some involuntary movements (chorea), difficulty thinking through problems and often, a depressed or irritable mood. Medications are often effective in treating depression or other emotional problems. The effects of the disease may make the person less able to work at their customary level and less functional in their regular activities at home.

I am in this stage. In the Middle Stage, the movement disorder may become more of a problem. Medication for chorea may be considered to provide relief from involuntary movement. Occupational and physical therapists may be needed to help maintain control of voluntary movements and to deal with changes in thinking and reasoning abilities. Diminished speech and difficulty swallowing may require help from a speech language pathologist. Ordinary activities will become harder to do.

In the Late Stage, the person with HD is totally dependent on others for their care. Choking becomes a major concern. Chorea may be severe or it may cease. At this stage, the person with HD can no longer walk and will be unable to speak. However, he or she is generally still able to comprehend language and retains an awareness of family and friends. When a person with HD dies, it is typically from complications of the disease, such as choking or infection and not from the disease itself.

In all stages of HD, weight loss can be an important complication that can correspond with worsening symptoms and should be countered by adjusting the diet and maintaining appetite.I lost tons of weight and now wegh 125 lbs. Ensure or boost are one meal. Did not work for me.I drink two a day and are waiting for a Dietitian.I eat bites off food. I am now eating more and at a healthy weight.

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Head turning to shift eye position

Facial movements

Unsteady gait

Antisocial behaviors

Restlessness or fidgeting

Hallucinations

Irritability

Moodiness

Paranoia

Psychosis

Loss of memory

Loss of judgment

Speech changes

Personality changes

Disorientation or confusion

Anxiety, stress, and tension

Difficulty swallowing

Speech impairment

Slow, uncontrolled movements

Quick, sudden, jerking movements of body parts

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Treatment

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Medications

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Some doctors may prescribe drug treatment when it is not absolutely necessary. In many cases, people with HD do better when medication is kept to a minimum. My Mom was on to many and went to the hospital. She was seeing things. Often, drugs that are effective at one stage of the disease may not be effective at another. My meds keep being upped. I got, one that, it made me, twich.

For these reasons, it is preferable to locate a neurologist with expertise in HD. Not all neurologists are familiar with the disease. Though a family physician is not likely to have much experience with HD, that physician should remain involved in ongoing care and treatment. The person with HD and family members play a critical role in monitoring and assessing the effectiveness of any care and treatment. We haave a good family Doctor here.

Tranquilizers such as clonazepam and antipsychotic drugs such as haloperidol- I am this med. It is perfect. No side effects. Clozapine can help control movements, violent outbursts and hallucinations. I want anti-choera medicine. While these medications can be helpful, a common side effect is sedation, and in some cases, these medications may cause additional stiffness and rigidity. Various medications, including fluoxetine (Prozac, Sarafem), sertraline (Zoloft) and nortriptyline (Aventyl, Pamelor), can help control depression and the obsessive-compulsive rituals that some people with Huntington's disease develop. Medications such as lithium can help control extreme emotions and mood swings. Prozac has been found to help us with our memory loss and abilty to learn. There is Memamtine, it helps with HD.There is an accupuncture technique that helps us. Emotional Freedom Techniques. It is good. Stem Cells treated the first person. Took away ten years of damage. There is also creatine(antioxidant).My brother is on creatine and is going into the Creatine trial. My Dad got me some Creatine too. Gary has noticed a change in 6 months. He gained wieght. There is Zoloft studies. I am part of CHORT I am part of PREDICT HD too. It is another exploratory Research. We are starting Creatine study in October. I have been doing that for 6 years now. Fish oils and COQ10(antioxidant), are being looked at too. Dimebond cured my demintia.. Blueberrys help too. MSG kills our brain cells. Sea salt builds them. We need the vitamin B12 so our brain does not shrink. OMEGA 3 will help demintia. Keep our mind active. I have a Scooter now. I enjoy taking it for fun rides.If these results hold true, caffeine would be the first specific environmental factor identified that can affect the onset of Huntington's disease. Consequently, stimulating the adenosine receptor ó rather than blocking it, as caffeine does ó could provide a new therapeutic approach to delaying the effects of Huntington's. , slows the onset of motor problems and delays death in three models of Huntingtonís disease, according to researchers at the Salk Institute for Biological Studies.

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More Treatment Options

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I have said that my regime includes aerobics. Going for walks is also very important for us. I also go everyday with my Lucky Princess. I doggie sit her. I have been doing yoga now too. I also find green tea to be helpful. I saw a study on it last year, and starting doing the two cups of day thing. It is supposed to slow done the onset of disease. Add 30 ml of citrus juice. It helps us absorb more. Exercise helps us build neurons. Music also helps us build neurons too. Keep your mind active for as long as you can. There also is a speech therapy or physical therapy option, for when we canít do it anymore I found out, that Theripudic Horse Riding, was the best, for me. My Inga, healed, me compelty. Rest up and you will feel better. Getting a good nights sleep is very important for daily brain function. I have started work on my mental symptoms with a counselor. She is helping me find ways to effectively deal with it. Physio did not work for me. I also am on Zyprexa(10mgs) to stop my hallucinations. I am on Epival(1000mls) to control my anger and irrational thinking. I am on welbrutrin(100mls), for my depression and my Happy Med, Halpurdal. I got lowered, I was on, to many meds. I am now, on DIMBOND nd it totaly works good, to clear, up my mind. I am using ensure to gain weight. I have gained 12.5 pounds in 2 months. Half on the morning. Half at night. It has worked fast. In a week I had gained weight. I use Creatine instead. It helped me back to 18lbs. I am back to the size before I got HD. Maintaining, or even gaining, weight can help reduce involuntary movements and other symptoms, particularly in the later stages of HD. Nutritional supplements can help and a nutritionist can offer other valuable suggestions. I have been chorea free since I gained weight.I watch documentaries to keep my mind active. I will forget my meds. I can still rememeber facts from years ago. I have an Occupational Therapist now too. She put bars in my bathroom. I got bed rails, bars in the tub, a huge hospital bath and shower setup now. She monitors my falls. She checked out if my Home Care Nurses are doing everything the can for me. I am on Trazadone to get a good sleep. I drink cranberry juice and eat yougurt everyday to stop and prevent my bladder infections. I take two pieces of healthy chocolate a day. It helps us fight off Dementia. Browsing the internet uses your brain. It fights off demintia too. My Dad got me a WII fit. My Dad found out they use them for rehab. It found out instantly that I had balance issues.I set a goal to get more balance. There are a lot of activites that can help.I love it. My brother is taking Creatine. I have been diagnoised with bladder retention. I had 430 cups in my bladder. They had to use a cathieder to get it out. I have to viod soon as I get the feeling. I can't hold in anymore.I got a stuffed intestine; filled with fecal matter, it gave me cramps. I took Aderail and it worked well. I am on Dimebond, it took away my demitintia. I was over medicated. Now, I am on 7 meds, instead of 12. I feel completely healthy now No more wheelchair and walker. I have a lifeline. I fall alot. , slows the onset of motor problems and delays death in three models of Huntingtonís disease, according to researchers at the Salk Institute for Biological Studies.

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Juvenile Huntingtons Disease

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Juvenile Huntington's Disease (JHD) refers to children/teenagers who develop symptoms of HD before they are 20 years old. Ten percent have it It is a rare condition and only 5% of people affected with HD will develop symptoms this young. The younger the child is the faster it will progress. This can make it quite an isolating experience for the person affected by HD, their family, and any professionals that are helping them. Most Docters do not know about it. Find a specialist. All of the symptoms will be different.

HD in young people can present differently to HD in adults, although this is not always the case. Children, and to a lesser extent teenagers, with HD are more likely to show rigidity of the muscles. It is less common for them to show the chorea , that is often seen in adults with HD. Epilepsy can occur in some people with JHD, and this occurs more commonly than in adults with HD. My family are all JHD, we get sick in our early twenties.

Symptoms Of Juvenile Huntington's Disease

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Positive family history of HD, usually in the father

Stiffness of the legs

Clumsiness of arms and legs

Decline in mental ability

Changes in behavior

Seizures

Swallowing or speech problems.

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Treatments for Juvenile Huntingtonís disease

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They will give them Anticonvulsant Drugs. They are stopping the seizures that they have. These might actually make the other symptoms worse. There also is Physical Therapy to prevent Atrophy.

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Therapies they use


Good Preperation

Good Nutrition

Support Networks

HD medications for adult form