Is a craving for food, especially sweets, a symptom of HD, or is it just my excuse for eating??? I believe most people with HD are underweight, but I am overweight. I've also heard those who are overweight don't have as much chorea. Any comments or experiences?

Hey Debbie:
Last year, my neurologist told me that he believed I had an Atypical Non-Chorea Form of Huntingtons Disease, a type called WESPHAL VARIANT. This type of HD is
typlified by muscular ridgity, and spastic muscles, but almost NO Chorea. I have
no balance and I also have that awful HD gait. and I break everything in sight as I
am a total klutz. I have been overweight my entire life, and have been unable to
excersize much because of muscle spasms and I started to fall down a lot.
I tried yoga, water exersizes and my old favorate standby, walking for exercise,
all of which caused me a lot of calf muscle spasms. I started to realize that I
was hurting myself worse trying to excersize and have been searching for some
kind of special excersize for people with spasticity, and who are total klutzes
The medication my neurologist prescribed is a muscle relaxer called BACLOFEN,
which helps me with some of my aches and pains, and which also allows me
to walk a little better than before I had the medication.
So to your question, I can respond by saying yes, I also have an out of control
sweet tooth that has gotten worse as my HD progresses, and it frustrates me
no end that I haven't been able to find any kind of real excersize, and I also have
almost no movement (chorea)..
Hope this helps somewhat.

Ruth Lance
age 43 diagnosed with HD in 1999.

Hi Debbie. I took the liberty of posting your question to the Hunt-Dis listserv. The names were deleted to maintain confidentiality. My wife, who has HD, is also a little overweight but has been losing weight recently. Here are a few of the member responses....

Hi, I couldn't go to that site, but I will tell you that my H*** has the
sweet tooth to end all!
He's always liked sweets, then developed a type of hypoglycemia that
prevented him from eating sweets.
Over the past couple of years he's gotten back into sweets, and now is eating
them as much as possible. He's still losing weight, and I just can't bring
myself to deny him this pleasure.

---

No J***, D*** has the biggest sweet tooth around. Now that he can no
longer swallow he still wants sweets. He somehow sucks down cokes and
still manages candy. I take malted milk balls and break them into small
bits and he sucks them to a liquid and has a huge smile on his face the
whole time.

D*** used to go through a box of candy bars from Costco, like maybe 48
peanut butter cups, in 3 days! Of course he still lost masses of weight.

---
In response to the craving for sweets,believe me you have this craving
because you are eating sweets already, sweets such as candy cake, pie ice
cream,are the worst form of Carbohydrate to put in your body,they are very
satisfying,or should I say comforting to your body,but are really a deadly
poison to your system,The reason H*** is still losing weight is his body
just burns up those simple Carbs too fast without deriving any long term
benefit from them,you've got to get H*** to Eat more Protien and Fat and
vegetables,can henry eat nuts?I have been able to replace all my intake of
sweets with "Almonds" granted I eat a half pound of fresh almonds a day,but
I don't take in but a minimal amount of carbohydrate and have achieved great
control over my Diabetes,my DR. says if I can keep this up I will be off
Medication within 6 months.But I sure can sympathise with H*** as I Dream
of "Snickers" and "Moon Pies" )

Dear Debbie:
I can only answer you from my own experience. I have early HD. All my life I have been very thin with the metabolism of a hummingbird. About the same time I started noticing symptoms, I also started gaining weight. I do crave sweets, but seem to have a very small capacity for eating much at one sitting like during meals, but I feel hungry all the time. Meals are also difficult for me because of the activitites and distractions involved that seem to absorb my attention and enery.
I have only a little chorea at this time, some balance problems and "restless" hands and legs. Most of my symptoms are cognitive, i.e. impaired short term memory, difficulty sequencing tasks, and although I don't slurr, I have a lot of problems grasping words and conversations are taxing for me.
From talking with others, it seems as if Phds tend to crave high calorie foods, especially sweets, but that when the chorea starts these extra calories are quickly burned up.
Deb

Thank you all so much for responding. I find the experiences of others both heartbreaking and comforting. It is strange to watch your parent going through symptoms and then dying and feeling so sorry for him, and then to see yourself starting to have symptoms. I have one more question. Sometimes in bed before sleep, I gag, as if my throat muscles had involuntarily squeezed together. It is scarey. I have to shift to my other side or try to open up my throat wider. During sleep, however, I don't have problems. Does anyone feel this, too?

Dear Debbie:
I don't have any trouble with gagging, but over the last year or so, I occasionally quit breathing in my sleep. I'll be dreaming that I'm short of breath, or that something is covering my face, or in someway stopping my breathing and will JERK awake to discover I can't take a breath. I have to force myself to gasp and then I have to force myself to calm down because I go right into a full blown panic attack. Very scary. My husband has sleep apnea and has to use a CPAP respirator when he sleeps. I don't have the symptoms he has. I don't snore, I don't sleep on my back. I also don't know what causes it. I think I just "forget" to breath sometimes when I'm deeply asleep. I wonder if your description of "involuntary muscle spasm" isn't hitting the nail on the head. Deb