Difficulties Faced by Sufferers of Huntington's Disease

ABOUT THE DIFFICULTIES YOU MIGHT FACE IF YOU HAVE HD
Huntington disease is a complex condition that people generally live with for a long time. It can be overwhelming to stop and think about all the difficulties you might face, as if they happen all at once.

It is important to remember that not everyone faces every difficulty Huntington’s can present and not every difficulty presents at once, or in the same order, as for someone else. Changes happen over time and people can find ways of dealing with issues one at a time. So it is possible to cope and live life well, even with HD, especially if you plan a little and use available supports.

Most people actually find their life is still pretty good for a lot of the time after diagnosis. They do face rough patches, a bit like stepping-stones along the way, and in between, things go along like they do for most people and most families.

Over time you will need to make many adjustments and modifications in your life. You will need to accommodate the changes that your illness will bring as it progresses. Some losses will be painful and hard to accept. They may generate quite intense feelings of frustration, anger or sadness that can be scary. There will be changes in your relationships with other people, who will often be reacting to the changes in you. Some things may not change but stay just the same. Remember even with Huntington’s you will always be you.

As the symptoms of Huntington disease progress, you will not be able to do all the things that you were once good at. Therefore, over time, you increasingly need others to help you do things you once did yourself and to make choices about your life you once made yourself. Eventually, you will need those people to make most choices on your behalf.

The timing and degree of this progression, and the transfer of your independence, to dependence on other’s care, is often the issue that causes most difficulty for you and everyone else on the HD pathway. Planning ahead for this can help both you and the ones you love.

It is important for someone with Huntington’s to have the support of some key people, right from the start. Initially they can give you extra emotional support and perhaps as time progresses, they will be the one/s who will start to take over the important decisions about your care. This might be your spouse, family members, or friends. You might want to consider giving one of the people closest to you, Power of Attorney to ensure your wishes are met when you are no longer able to see to this. Professional case workers, like those at AHDA (vic) Inc. and others in the community, can help too.

Being aware of some of the difficulties you might face might help you to:

Recognise, if those difficulties arise for you
Know who to talk to about your situation
Plan ahead if you are someone who likes to do that.
Decide to get help for yourself, or someone you care about:

WHAT ARE SOME DIFFICULTIES YOU MIGHT FACE IF YOU HAVE HD?

EARLY ON YOU MIGHT HAVE DIFFICULTY WITH:

Getting a diagnosis
Accepting your diagnosis
Deciding when and what to tell other people about Huntington’s
Coping with changes in relationships with spouse, family, friends
Telling your children that you have a significant illness
Telling your children about Huntington disease.
Dealing with difficulties at work - deciding when and how to finish up
Managing financial and income issues
Feeling unmotivated, just can’t be bothered with anything
Coping with emotional changes like anger, sadness, anxiety
Deciding to stop driving & finding out how to get around without a car
Coping with increased clumsiness - dropping and breaking things
Planning for the future

A BIT LATER ON YOU MIGHT HAVE DIFFICULTY WITH:

Getting organised and remembering things like appointments
Caring for children
Coping with lots of noise and lots of things happening at one
Being embarrassed by stumbling, clumsiness and even being mistaken as drunk.
Coping with injuries from frequent falls
Coping with feelings of depression or sadness or anger
Not being able to control your emotions & lashing out at people you love
Shopping and paying bills or spending too much
Cooking and cleaning
Safety around your house
Getting medical and other reviews and assessments when needed

LATER ON AGAIN YOU MIGHT HAVE DIFFICULTY WITH:

Monitoring yourself and the things you need help with.
Showering, dressing and feeding yourself & coping with household chores
Feeling lonely and isolated
Feeling tired all the time and having no energy to do things
Feeling hungry and losing weight
Eating difficulties and swallowing difficulties.
Having extreme feelings that are hard to control or understand
Your partner getting tired while caring for you and needing a respite break
Decisions about medical treatment e.g. in relation to tube feeding
Legal matters such as, Power of Attorney and your Will.

EVENTUALLY:

It is likely that your support and care needs may be greater than can be managed at home, no matter how much your loved ones would wish they could. AHDA (Vic) Inc.can assist you to find a place where you can be cared for in the best way and still stay closely connected to your family.

REMEMBER

HD can and does present people with a complex range of difficulties.

however,

Not all difficulties identified occur for everyone or in the same way and in the same order.
Changes happen over time and people can find ways of dealing with issues, one at a time.
Services and supports are available and do make a difference
AHDA (Vic) Inc.workers are available to talk about your experience and help you with information, planning and the extra supports or services you need.