Topic: Bev Hartig’s Update Meeting
Date, Time: 1/10/16 @ 5:00 PM
Location: Hartig Home
- Purpose: To communicate with everyone the many changes and updates to Bev’s condition since her “Coming Out” meeting in 2008, when she courageously decided to educate others about her diagnosis with Huntington’s Disease.
- Brief Overview of HD and Bev’s Diagnosis
Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25-year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications. Everyone has the gene that causes HD, but only those that inherit the expansion of the gene will develop HD and perhaps pass it on to each of their children. Every person who inherits the expanded HD gene will eventually develop the disease. Over time, HD affects the individual’s ability to reason, walk and speak.
- Personality changes, mood swings & depression
- Forgetfulness & impaired judgment
- Unsteady gait & involuntary movements (chorea)
- Slurred speech, difficulty in swallowing & significant weight loss
Stages of HD
Although symptoms of HD vary from person to person, even within the same family, the progression of the disease can be roughly divided into three stages.
Early stage HD usually includes subtle changes in coordination, perhaps some involuntary movements (chorea), difficulty thinking through problems and often a depressed or irritable mood. Medications are often effective in treating depression or other emotional problems. The effects of the disease may make the person less able to work at their customary level and less functional in their regular activities at home.
In the middle stage, the movement disorder may become more of a problem. Medication for chorea may be considered to provide relief from involuntary movements. Occupational and physical therapists may be needed to help maintain control of voluntary movements and to deal with changes in thinking and reasoning abilities. Diminished speech and difficulty swallowing may require help from a speech language pathologist. Ordinary activities will become harder to do.
In the late stage, the person with HD is totally dependent on others for their care. Choking becomes a major concern. Chorea may be severe or it may cease. At this stage, the person with HD can no longer walk and will be unable to speak. However, he or she is generally still able to comprehend language and retains an awareness of family and friends. When a person with HD dies, it is typically from complications of the disease, such as choking or infection and not from the disease itself.
In all stages of HD, weight loss can be an important complication that can correspond with worsening symptoms and should be countered by adjusting the diet and maintaining appetite.
Update on Bev and her current needs:
Medical Updates, Social Emotional Updates, and Personal Updates
- No Driving per Neurologist
- No Alcohol (Only a spritzer or Maximum 2 spritzers with mostly Sprite can be tolerated with Bev’s current medicines.) Substituting with grape or cranberry juice is great too so that Bev can feel a part of the social scene.
- Balance is the biggest issue for Bev right now, and falls are becoming more common and can be dangerous.
- No heels for Bev
- Bev needs escorted on ice and with stairs at all times
- Dietary concerns and choking can be an issue with tongue muscle control, but Bev seems to be doing ok with this for now.
- Assistance with organization and reminders: Bev can always use help with reminders and organizational tasks as these have become increasingly more difficult. She could especially use help with organizing her closet and office right now (per Bob!)
- Currently, The Hartigs have hired help with Katie to get her ready for school, and after school until bedtime at 8:30pm Monday through Friday because Bev is not able to do this any longer.
- Assistance with driving and meals (Sign up Genius emails sent out)!
- The Hartigs have hired drivers every Tues, Wed, and Thursday.
- The Hartigs do NOT need help with meals, but have asked for weekends to be added to the driving assistance calendar so that Bev can get out of the house for a bit and Bob can spend time at home with the kids and family after traveling all week with work.
- Please sign up to help on the sign up Genius, even for just an hour or 2 on a Sunday! It would be GREATLY appreciated by Bev (She is getting really bored with all the Football/Sports Bob and Ryan are watching at home on the weekends.)
Sign-Up Genius Link: Sign Up Here!
Website and Facebook Pages
Upcoming BHHDF Event April 30th 2016
** Please continue to check website and Facebook for details and updates
Kristy Busack 440-7221