Hi everyone,
I have a question about difficulty swallowing in people with HD. Im the caregiver for my dad who has had HD for about 9 years now. He is constantly complaining about not having any saliva and has trouble swallowing, even without eating. The best way he can describe it is that his throat feels like its "locking up". I have taken him to throat and gastro doctors but they all say everything looks normal. He claims he can only eat certain foods and everything else makes him choke. Like he will drink diet dr.pepper but cant drink diet coke. Im wondering if anyone else has experienced this and if theres any medication out there to help generate saliva. Thanks

My husband has been diagnosed for 8 years. He has difficulty swallowing and due to that drools almost constantly and tends to choke on his salivia because he cannot not swallow it. Difficult to say with your father if his sensation of swallowing is decreased which may feel like "dry" mouth. Since his mouth seems "ok" with Dr. Pepper and not Coke, I would give him Dr.Pepper and anything he says makes it better or he "thinks" makes it better. I would probably go with this simple approach at first and make sure his foods are moist and easy to swallow, using gravy and butter and do not give him any dry or difficult to swallow foods. The muscles may be "locking up" if they do not have the force for a complete good swallow. Also the tongue may not have the coordination to move the food easily to the back of the mouth and throat for ease in swallowing. He may not be able to chew up food anymore. When my husband stopped being able to chew I said it was like watching a duck eat ( no chew...just swallow). Then it was time for very fine or pureed food. I know for people that have dry mouth there are actually meds or swabs to increase salivia but that may increase choking depending on if lack of salivia is actually the problem. I would go with the simple approach first and if he can verbalize what makes it better give him those things and make sure his food is moist.
Lizzieann

I have just started choking when I eat, but not to the point I'm changing my diet. What are good exercises for this. I heard therapy could help.

When swallowing problems started a couple of years ago, Ms. America was referred to a speech pathologist at the local MedStar hospital. She put her on a diet requiring mashed/crushed food and liquids thicken to nectar consistence. However, as swallowing problems became more frequent and intense, her diet was changed to pureed foods and liquids to honey consistence. Swallowing problems persist and in-spite of efforts by her care givers, she still aspirates and has frequent coughing/choking spells. The last one resulted in a five day hospital stay to knock down pneumonia resulting from aspirating food/liquid. So, lesson learned- see a speech pathologist who should order a barium swallow test to assess swallowing problems, recommend a feeding program and diet, and help monitor progress.

The medical community is woefully ignorant of Huntington's and all the manifestations of the disease. So, we drop a copy of HDSA's Physician's Guide To HD during the first visit to a new provider. And, when visiting specialists, such the speech pathologist, we also leave a copy of literature such as HDSA's Family Guide Series on Speech, Language and Swallowing Difficulties in HD, which help. Also, HDSA's A Caregiver Guide for HD Families has a chapter on The role of Speech Pathologists in Huntington's Disease. A copy of HDSA's Caregiver Guide for Mid to Late Stage Huntington's Disease: For Log term Care Facilities and In-Home Care Agencies is provided to agencies who support Ms. America as part of our on-going effort to educate the local medical and health care communities.

As you know, it ain't easy, good luck and let us know if we can be of help.

from the south of Maryland,

Fred Lothrop

It sucks