You'll also lose your balance. In addition, your speech will become more difficult, and soon you'll need full-time care to get through your day. Because Huntington's disease is a genetic condition, a person affected with the disease has a 50 percent chance of spreading it to their offspring.
Although it typically develops in adults between the ages of 30 and 50, symptoms can show up as early as two years of age or as late as age One of the frustrating or potentially positive aspects about Huntington's disease is that it's difficult to predict life expectancy. After being diagnosed, someone may live for only ten years, or they may live for up to 30 years.
If you were diagnosed in middle age, this means it's possible for you to have a normal life expectancy. That said, receiving a diagnosis at a young age can be quite frightening and difficult to accept, especially since there's no real timeline to predict how long you will live. In short, there are certain steps and measures you can take to extend your lifespan. However, it's hard to predict the progression of your illness. This is why it's so important to have a support system and to enjoy your life.
Practicing mindfulness can help you with that. It's also important to be diagnosed early. Early symptoms of Huntington's disease may not be obvious. Someone with these symptoms may think they're just getting older, going through a phase, or simply having an extra clumsy day.
However, if you keep track of your symptoms or know you're at risk for Huntington's disease, they can be eye-opening. If you're experiencing any of these symptoms, it might be a good idea to speak to a doctor.
They will be able to rule out other illnesses and determine if you have Huntington's disease. A simple genetic test is all that's needed to render an accurate diagnosis. If you do, indeed, have the disease, catching it early can help you get started on treatments and managing your illness. As mentioned before, the progression of Huntington's disease is unique to every individual.
Care at this advanced stage can be provided in a range of settings, including your own home or a hospital some have palliative care units , hospice or care home. Many people are able to stay at home with a care package provided by social care, the NHS or a local hospice until the end of their life. Any preference, for example for your loved one to end their life in their own bed if possible, should be discussed and noted in care plans.
An option that may be available is care by a hospice in the final few weeks either as an inpatient or via a home visiting team. A referral can be made to the hospice team by the GP or doctor caring for the person.
This may offer a calm and well-managed time at the end of life and provides support for the family as well as the individual. If possible, a conversation about where care might be provided and a look at the options available before you reach this stage, is helpful.
As they may spend most of their time in bed, sheets and bed clothes may need daily washing and drying, as well as frequent replacing. An incontinence nurse can provide some useful help and advice - you can get a referral through your GP. The disease can also cause difficulties with controlling body temperature which may either increase or decrease the need for heating the home. If they are frequently very hot, they may sweat profusely and feel very uncomfortable.
Clothing where possible should be light and made of natural fibres and t-shirts can be placed in a plastic bag in a freezer to cool them down before the person puts them on. Cold drinks and ice cream can be soothing for the individual when they are feeling very hot or extra water can be given via a feeding tube.
If the person is very cold, as well as wrapping them up as much as possible, you may need to turn up your heating. You may be able to get cold weather and winter fuel payments to help with this. She was diagnosed at the age of 50 years old.
I hope this gives some of you guys hope knowing that it has been 33 years since her diagnosis and she is still going stong. She does have some difficulty speaking but I can usually understand her she loves to eat pizza Chinese and Burger King. She does need help getting dressed and getting showered in the morning but other than that she feeds herself and uses the restroom herself too.
I hope this gives someone hope for a brighter future! With a lot of love and the proper care someone with Huntington's disease can definitely live for a long time much longer than the doctors predict. What a wonderful story! I'm so happy to hear about this. Hope is such a wonderful thought when it relates to a terrible illness. Thank you for sharing! My mom is 65 yrs old.
All she does is lie in her bed. She cannot sit up or feed herself. She likes to hear my voice so I do anything to hear her smile or laugh.
I cannot possibly think about life without her, but I guess it is inevitable. I just don't know what are the signs that will tell me when she's nearing the end. I love her so much but I am tired of seeing her suffer. Fill in the required fields to post. Your email address will not be published. Envelope icon Subscribe to our newsletter Get regular updates to your inbox. Your Email. Share this article: Share article via email Copy article link. I saw a pig fly the other day. Print This Page.
He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. For the record, Carlos thinks his puns are really punny and funderful. Tags grandparents , grief , life expectancy.
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