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Huntington's Disease Youth Organization

Questions about eating and choking and what people with HD feel

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. Hi, my name is Lorena, a 24 years old girl from Spain, and some months ago my family and I had been told my mom is suffering from HD. Of course, symptoms were present before, maybe for 2-3 but doctors were unable to give us a diagnosis. Now we know, I have got many questions and fears … I am determined to go through the predictive test immediately … My biggest worry is about my mom. I know that swallowing difficulties are part of the disease, but my mom is not eating almost. She has to take nutritional supplements we buy at the Chemist. She had lost lot of weight. I know a PEG is recommended at the advanced stages. But I am terrified about this. My question is: Is it normal that my mom with only 55 years old is already at this point? She is still eating but very few and with chokings.

My second question is that she is not speaking. Right now I am in Spain. I live abroad and before I used to speak with my mom everyday and now it is almost impossible. It is very difficult for her to maintain a conversation for more than 5 min. Is it possible she will not speak at all? Is it likely this will occur soon or how long can it take?

And my last question is about her feelings, as she is not longer talking I do not know what is she thinking, what is she feeling, if she is happy or she does not feel nothing at all… This is worrying me a lot. I do ask her, but she does not answer me. What an HD patient is feeling? When she is sitting watching TV I do not know if she is listening to it, or if she is just lost in her world… I do not know whether she is happy although she use to smile frequently, but she is also very serious at times. Is she conscious of what she is suffering? Is she feeling it but she is not able to express it? I know HD patient do suffer a lot at the beginning of the disease because I had seen it in my mom, because there is denial, because they feel no body understand, because they see reality differently, .. many things, but now my mom is under medication and she is in calm. My main question is if she suffers or not …

I know this is a very long e-mail, but I am really lost about this … I only want the best for my mom and I am really scare seeing how fast she is developing. Or maybe we just see only the worse and she may stay a long time like this. Please, I need a helping hand …

Thank you so much. Regards,

Lorena, 24, Spain

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A. Dear Lorena,

I’ll try to answer all of the questions in the order that you have asked them & then quickly comment on predictive testing.

1) Weight loss & not eating: Many people with HD lose weight, regardless of their age. Often you can make feeding easier and increase weight. There are many potential causes of this & it’s possible to have more than one cause at a time. I have listed some causes below -

2) PEG feeding: I try to avoid this. Most times with help from a speech pathologist & dietitian it can be avoided

3) Not speaking: In my experience there are 2 reasons for not speaking. Firstly, depression can reduce motivation to speak as part of general loss of interest (this can be treated). Secondly, some patients become mute as the HD worsens. However, in my experience they still often remain interested in what their family is doing. It’s good to talk to her about what you are doing in your life, what is happening to other family members and other topics that will interest her. Communication is facilitated if there is no back ground noise or distractions as HD folk are often distractible and have reduced concentration

4) It can be difficult to know what a person with HD is thinking & feeling. If your mum is calm and not distressed then I suspect that she is not suffering or unhappy. People with HD often show their distress. That is, if she is in her “own world” then she might be content. The medicines that we use to treat distress, anxiety and depression are often very effective and prevent emotional suffering. In my experience the unhappiness people with HD feel is most severe early in the disease.

I was interested that you are considering predictive testing. Many people find it really important & valuable, but it can also be stressful while you are going through it. . I often suggest to young people at risk of HD who wish to have testing to tell the counsellor about how they are coping with the impact of illness in loved ones on themselves. That is, seeing a good counsellor gives you the opportunity to work through your very natural feelings about your mum as well as decide whether or not you want gene testing.

All the best for the future,

Andrew Churchyard