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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 23-07-18, 03:49 PM   #1
Ellie
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Default Late Onset Chorea

Hi Everyone
My HD+ husband is 60 and up until now has shown no symptoms. However, the last couple of months he has been rubbing & scratching his face, ears & head when sitting. He can do it up to twice a minute. The movements aren't jerky but no-one could possibly need to scratch an itch that often! Hubby just says he likes to do it!
I don't know much about chorea and was wondering if anyone else had experienced this as onset? If indeed this sounds like chorea!
Many thanks
Ellie
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Old 24-07-18, 06:23 PM   #2
Trish
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Default Re: Late Onset Chorea

Quote:
Originally Posted by Ellie View Post
Hi Everyone
My HD+ husband is 60 and up until now has shown no symptoms. However, the last couple of months he has been rubbing & scratching his face, ears & head when sitting. He can do it up to twice a minute. The movements aren't jerky but no-one could possibly need to scratch an itch that often! Hubby just says he likes to do it!
I don't know much about chorea and was wondering if anyone else had experienced this as onset? If indeed this sounds like chorea!
Many thanks
Ellie
Hi Ellie

You mention your husband is HD+ which suggests he has been diagnosed through a genetic test. Hopefully that means you guys are in the system and he is under a HD Team.

Chorea comes in many different forms, and HD seems to come in many different flavours too. The initial signs for hubby were more emotional and behavioural changes but he did have involuntary facial twitches (akin to frequent open pouting)and made 'picking' movements as if he were trying to pick something off the knee of his trouser leg. Just one arm and one side.

He was not really aware he was doing this and I felt there was a bit of a pattern where the actions only seemed to occur when sitting down and watching TV or relaxed when seated. It was as if his body was free to do its own things once his brain was focused/his concentration focused on the distraction of TV.

I appreciate that is not the same as you describe but, where this was seen as a chorea thing, I wanted to relay HD manifests itself so differently.

What you describe may not be symptoms, only a GP or HD Specialist would be able to verify. One thing I did want to say though is that even if what your husband is doing does reflect an early stage of symptoms one of the key things we learnt was that if the facial twitches and 'picking' was not interfering in Hubby's life then it could be put on the back burner. Irritating - yes (to me not him where I could see it) but our HD Team were eager to only really look at medical and other interventions when the symptoms were causing distress or interfering with carrying out tasks and quality of life etc.
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Old 25-07-18, 11:07 PM   #3
Ellie
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Default Re: Late Onset Chorea

Hi
Yes. He had the genetic test about 15 years ago.
Since then we've got on with our lives and lived it to the full. We feel lucky that he has got to 60 with no symptoms.
He has no mental or cognitive issues just a constant need to rub or touch his face and head. Sometimes he rubs his finger under his nose.
As you so kindly pointed out - specialist probably wouldn't think it a major issue at the moment as it is not having any impact on his daily living.
Many thanks
Ellie
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Old 26-07-18, 12:06 AM   #4
Allan
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Default Re: Late Onset Chorea

.
Hi Ellie

Just tagging a few things on after Trish’s post. I’m on the fringes of HD with a CAG repeat count of 35 - but I do have Type 2 Diabetes related Peripheral Neuropathy. The PN affects my feet and toes - but if I were to look it up and go through all the given symptoms I’d end up constantly checking and worrying.

Each person’s experience, whether it’s HD, PN or anything else, varies greatly, depending on their type of symptoms.

These are the most common symptoms of Peripheral Neuropathy:

1) Severe strange pains in your feet, legs, hands and other parts of the body; including “crawling insects” under your skin;
2) Balance is difficult when walking, getting dressed, getting out of bed or whenever you close your eyes;
3) Numbness/heavy/cardboard/heavy cement feeling/Novocain feeling in your feet and legs;
4) Tingling or “vibration” like feelings in your feet and hands;
5) Electric shocks starting at the bottom of your feet/foot that shoot up your leg(s) and on almost any part of the body;
6) Bone pain especially in the feet on walking or standing;
7) Painful muscle spasms/cramps;
8) Skin may become painful to touch or loss of the feeling of touch; with Agent Orange skin rash;
9) Burning sensations in your feet and hands;
10) Loss, or lessening, of sensation for hot and cold;
11) Feeling like you are wearing socks when you are not;
12) The feeling you are walking on crumpled socks or stones;
13) Feet feel swollen or large;
14) Difficulty moving your hands or feet;
15) A feeling of clumsiness, tripping (foot drop) or dropping things;
16) Attacks of daily severe exhaustion with strange fatigue;
17) Problems with not sweating in lower body but with excessive sweating in upper body;
18) Digestive (fullness; alternating diarrhoea/constipation) and/or urinary problems (overflow incontinence);
19) Sexual problems (loss of sensation/feeling/moisture);
20) A tightening of your chest with an increased difficulty in breathing and/or swallowing; incorrectable vision problems.

I have 3 of these symptoms but I’m aware of people with HD who have 5 or more of these symptoms but don’t necessarily have PN. Granted many of these symptoms could be symptoms of other diseases too. So rather than take it on board and get “worked up” by what you observe day-in-day-out, you really need a well-qualified GP or Neurologist to make a specific diagnosis of the rubbing and scratching.

You will, most likely, come across very many HD habits that you find irritating and annoying - but that’s nothing in the general scheme of hd-family life. Don't ignore them though, soak them up and see if you can turn them into something more attractive and fun-like, in a positive way. We play "concentration catch ball" in the garden with a football - it certainly helps to lessen the involuntary movement of flailing arms ... and it's fun.

Best wishes …

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