Neurology Research International / 2011 / Article / Tab 5

Research Article

Quality of Life in Prodromal HD: Qualitative Analyses of Discourse from Participants and Companions

Table 5

Sample positive and negative QOL statements by time frame.

Positive Statements PrHDCompanion

NowIf you know (your gene status) you can start planning your life accordingly, living every moment.Since you know that you have HD, you take that into consideration and you intentionally make decisions that are more impacting.
FutureI know it will be better for me than for my father because I know my husband will betaking care of me.She knows that she is made secure because she is not going to be abandoned (in theFuture) because of this.
PastMy kids handled (results of gene testing) better than most adults.We went on a trip to (foreign country) and it was totally awesome and I really feel like it was a great memory for my family.

Negative StatementsPrHDCompanion

NowMy kids and my husband; they are very distant. They don’t want to hear about it or learnabout it.I don’t think I have helped much.
FutureThe other thing that would make me sad would be for (my kids) not to have their mom.It can be hard to know that eventually, and ultimately, you are going to get sick, so that would probably be one of the hardest things, just knowing.
PastMy grandchild was born and I showed no emotion.Feeling guilty that maybe she passed on a gene to one of her kids and then one of her grandkids.

PrHD = Prodromal for HD. Sample statements within each row are paired, such that they are taken from a single dyad.

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