Question and Answers 

QUESTION:

Trips and slips seem to be on the increase with my S.P. spouse. Are there any ways to stop these happening or preventing things getting worse?

 ANSWER:

Like everyone S.P. will experience some trip or slip in a variety of circumstances and for a variety of reasons. It could be that tripping is the result of loose mats, a bump in the footpath, uneven surfaces or various obstacles like the cat. Mostly people who have no impairment of movement, vision or balance reactions recover their equilibrium and carry on regardless of the trip, slip or misjudged step. A person with HD may not have the same speed of automatic reaction time and so the event is more noticeable and probably the events are more frequent.

 Distraction from the activities related to “walking” may reduce the brain’s capacity to process the information needed for the body responses to react quickly enough. So the obvious strategy is to reduce “multi-tasking” while walking — that is to e.g.: not talk and walk, not gaze about and walk, not carry objects and walk etc.

 To slow down “things getting worse” the best advise is to keep S.P. using the muscle groups needed for walking and strengthening them if possible. A physiotherapist may be approached for individual advice. One small word of caution, though, is that if S.P. was fatigued at the time of trips and slips, then that is an indicator to rest more and pace all walking activities.

 QUESTION:

I dearly love my family and S.P. We have faced many difficult times since the HID diagnosis which came well after our marriage and bringing up young children. I like to think that I am the “strong” one emotionally and will cope with the responsibility of keeping the family together through HD as it might turn up.

 We all supported our first adult child through the predictive testing process, but it was so hard and thwart with unforeseen predicaments and emotional turmoil. This all tested our feelings, behaviour, various beliefs and faith.

 But as more of the adult family get tested, I really am feeling less “strong”. For them I need to hold it together, but for me oh is it getting tough. What can I do?

 ANSWER:

Probably by writing in, you feel some relief. The act of writing down your feelings and experiences either in a private “journal”, letter or to someone in itself can be therapeutic. Well done.

 By also confiding in a friend, Field Officer, counsellor or advocate you may also clarify your own emotions, feelings, needs and options. All very important in order for yourself to as you say “cope with the responsibility of keeping the family together”. But maybe you are taking on more responsibility than your family would expect? Your needs and ways to keep being a spouse, parent and possibly a grandparent you will know. Please keep your own perspective and share the responsibility with all the family as you all live with HD into the future.

 Getting tested perhaps has greater, wider and deeper implications all round than what the literature and individuals indicate. Stay with your experiences and endorse your family values, strengths and collective resolve. May you all retain hope and find plenty of joy along the way.

 QUESTION:

What can I, my brothers and sisters do about being at-risk of getting HD? We do not want to get tested while there is no cure.

 ANSWER:

The medical researchers are yet to come up with definite answers of how best to protect yourselves from what genetic inheritance you each have been living with since birth. Perhaps the approach we can recommend is concerning how each of you choose to live your lives. That is keeping a balance of mental, physical and spiritual wellbeing. Our bodies require some basics: sleep, water, nutrition, shelter, love, “doing”, nurturing etc to develop in a healthy and meaningful way. Therefore keeping ourselves fit, healthy, satisfied etc is always an important and not always easy goal for living.

 You may wish to seek other advice from the many “alternative health” or self­improvement services which hold interest for you. But at this stage we do not advise paying big money for “unproven” interventions.

 Also keep up with research developments as new genetic knowledge expands. Best of all support yourselves and share what you know, learn and discover