Here's The Deal with End of Life & Huntington's Disease

HDSA's Here’s The Deal tackles important topics to help you navigate through your journey with Huntington's disease (HD). In this episode Jennifer Simpson, LCSW sat down with Gia Mannone to discuss end of life & Huntington's disease.
NOTE: This episode was filmed prior to the COVID-19 pandemic.
HD Resources Near You: HDSA.org/locateresources
HDSA's Telehealth Program: HDSA.org/telehealth
HDSA Online Support Groups: HDSA.org/osg
Here's The Deal is hosted by Jennifer Simpson, LCSW, HDSA's Senior Manager of Advocacy & Youth Programs.
#LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily #HDSA #HerestheDeal

[@dorisjohns8124]

Just learned my grandson, age 26 is symptomatic. 55 repeats. Sweet compassionate young man. I feel his symptoms began as a young teenager. The ups and downs. Listening to this helps to really understand and feel we are not alone. Over the past few years a voice change, weak with a slight constant cough. Clumsy, coordination issues, cognitive delay, walking different, feelings of indifference, jerks, being accused of being drunk or on drugs. It's just all very heartbreaking. Thank you for sharing this story with us.

[@hk5288]

Thank you for sharing your story! While I will never understand the pain patients with Huntington’s and their families go through I can relate to the immensity of the loss of a parent at a young age. When I was in my early twenties my mother was diagnosed with breast cancer and I was with her throughout her 4 year battle until the end. I stayed with her in the nursing home for the last 3 months and when she finally passed I too had to get out of the room. I made all the phone calls outside from the parking lot and everyone I called wondered how I was so calm since my mom and I were so close. Making arrangements and the notifications didn’t feel like a burden at the time because it was something else that needed done. The most difficult part came later after the funeral when it all stopped. The past 6 months of my life had revolved around caring for my mom and I was completely at a loss as to what to do with myself. It will be 10 years this December and I still have a crater sized hole left in my heart from her loss but I’ve managed and can now finally look back at memories with her with smiles instead of tears.

[@judyivie4181]

This girls priorities was her education.

[@colinchick2692]

In UK hospice is in a residential setting - 24/7. Carers coming in to shower etc is called home carers. Interesting. You are so right that grief is ongoing.

[@nathaliechang7197]

What a shame this doesn't have more comments by now. Thank you for posting this. I wish I could have seen this before my mother passed away. Good information and thank you so much for sharing your story.

[@craig6689]

Thank you for sharing your story.

[@tibicenlinnei4014]

can someone tell me what to expect at the end for myself? my dad killed himself early. I'm not yet 30 but I was tested. I'm terrified and feel alone.

[@wendysaunders262]

Hi im Wendy and i have hd and a CAG of 57 I'm 44 and am in 2 stages of the beginnings so add me we can talk kk.

[@artisticwhistleblower1756]

💔🙏

[@kirillp.4630]

Enjoy your life not thinking about that. You can bother yourself with this when the time comes

[@gppoem3344]

The title really doesn’t go with the smiling face.

[@daffodil1017]

Guess what... Trauma doesn't mean you are crying 100% of the time. Sick people are full human beings. If you live in that space of despair, you can't go on for very long. You have to find superhuman strength and focus on the good.

[@judyivie4181]

This girl got the luxury of being away when her mother was dying. It seems her damn education was so much more important important.

[@zoi12steph34]

You don’t know what you’re talking about.