Hello all,
For the past month or so I have curiously noticed that my wife is developing OCD (obsessive compulsive disorder) or something close, she gets on a single thought and carrys that thought, sometimes days. i.e. she had an issue of some pictures that were recently taken, she swears that two pictures were stolen, however we know they weren't, no matter how much explanation or reasoning is offered about different subjects she continues on with her subject and then one day it is gone...........until she gets in her wayback machine with Mr. Peabody and in a fit of rage refers to every obsessive subject and finds me the blame of them all.
I was just wondering if anybody is experiencing this or has experienced this. It is just info for myself, as instead of taking this harshly i am learning about it instead. Constructive for me.
Got a psych appt. for the 9th of Feb so i obviously will bring this up, but knowledge sometimes is better gained by those who have experienced similar situations rather than those who have only read about it.
Ken

Yes, obsessive compulsive behavior and an inability to move past certain thoughts and ideas (perseveration) are very common symptoms of Huntington's Disease. It's not considered true OCD but is caused by the brain damage.

My husband does this too. Right now his recurring thought is that I am keeping us from becoming rich because I won't let him invest in the Stock Market any more. This comes up several times a day. Sometimes he wakes me up to rage about this and keeps me up all night. There's not a lot that can be done. Distraction is good if it works but it doesn't always especially if you don't succeed in distracting them quickly. Reasoning won't usually help although on an issue like this that's important to him (he used to be good at investing), I know it's not going to go away and I will try reasoning with him when he's having a good day and hitting on all cyllinders. Then I have something to work with later when he's not. I say a firm "You know I won't discuss this point anymore. We will just have to disagree" (this refers back to our 'rational' discussion). Then I continue with my work and try to look especially absorbed in it.

You may find that there is some activity that you can be doing which your spouse will recognize as important and be more likely to stop with the 'discussion.' For me it's work on the computer (probably because he was a programmer). A friend tells me that his wife is more likely to leave him in peace if he is writing something.

My husband's neurologist says that each SSRI antidepressant works in slightly different ways and some are more effective with different symptoms. He has found that Luvox is good with inflexibility for example. My psychiatrist neighbor says he has had the best luck with Paxil in dealing with HD compulsiveness and perseveration. So it may be that your doctor will want to try different medications.

I also want to mention that occasionally these perseverations are related to some underlying concerns and can be dealt with by addressing the concerns. A friend whose young son with HD could no longer live alone told me that he talked constantly about getting his own apartment again. His mother dealt with this by saying that she was enjoying having him home with her and she hoped he wasn't in any hurry to leave. She felt that the talk about the apartment was more of a reflection of his feeling bad about having to return to the nest than a real desire to be out on his own again. By reassuring him that she was happy to have him home again, she was able to reduce the frequency of these comments until they finally stopped altogether.

There are great medications that can control and stop obsessive compulsive circle talking and thinking. Don't forget to see how you are reacting to situations. Sometimes a person can reinforce negative behaviors without realizing it. Keep notes with frequencies and details of the behaviors so the doctor will have something to go with when deciding medications. This behavior is controllable and linked to the depression.

i feel at times i want to share some of the effects of hd with others because there is not a chronological order one can find pertaining to this disease, and others might find benefit in the experiences i am having.
we first had very bad bad behavior (landed her in jail for a month for a police confrontation) then she started with shaking, then falling, then loss of taste, aspirating, MAJOR weight loss, like 45lbs in less than six months, then we found out she had hd and as previously mentioned the ocd similarity. what is in store next? all cases are different but it is good to have an idea what may come next. As i have watched stroke victims, this disease seems to have siimilar affects. With my uncle the hole in his brain got larger and larger until it was over and had loss of different functions as the hole spread.
So what do they got to keep us caregivers sane?

Ken,

My wife followed a similar pattern. She didn't have the trouble with the police, but she was very irascable for a long time. She started having problems dealing with people as early as 1997. Her attention span dropped. By early 1998, she couldn't hold a job anymore.

She was visibly shaking in 1999. She stopped doing any type of housework. She was beginging to become very impulsive. At the same time she was very indecisive.

After that, she started having memory lapses in 2000. She became violent, like throwing things and striking me and other people she knew. This is the point we sought out a neurologist and applied for disablity.

She was having trouble with dressing and could no longer type (she once hit speeds of 80wpm) by 2001. She had to stop drop driving in 2001. She also stopped reading the newspaper or performing any "higher function" habits she had such as writing letters, taking notes, etc.

In 2002, she had to became rather a screaming lunitic. Obsessive, jeleous, and ready to fight at all times. She was paranoid and very, very impatient. I checked her in 3 times during that year for psych and neurological treatement that took 3 to 4 weeks at a time. Of course, the healthcare system couldn't handle both neruo and psych at the same time. I had to hire a sitter to take care of her full time.

In 2003, she began to slur her speech. Her coordination fell off, and her violent bouts were replaced with crying spells. Sometimes these spells lasted 2-3 days, where she would not stop and couldn't talk inbetween. Her ability to do her own personal hygene began to fade. By mid 2003, I had to brush her teeth because she couldn't squeeze the tube and get it on the brush. Let alone moving it back and forth in her mouth.

Now in 2004 she is much easier to handle. She has lost the ablity to reason and can no longer be violent because she doesn't have the coordination or attention span. She is under a great deal of medication. She can still function to some point. However, she requires me to do her personal hygene tasks like bathing, brushing her teeth, and most dressing.

Due to the medication, she sleeps a lot. She doesn't remember what it was like before the HD affected her.

Soon she will start falling and she will become incontient and I will have to place her in a nursing home (like her older sister). Because she is young (35 now) it's hard to get her in one. They don't like the liablity issues, and they don't understand the disease here in TN. They point to assisted living. The system is flawed.

I can't afford to put her in assisted living, that comes out of my pocket. If I could afford the $1700-$3000 a month for assisted living, I'd hire some more people and have it done at the house. I have to wait until the state says she's sick enough.


That's my chronological order.

Ken,

The thing that keeps THIS caregiver sane is my wife being properly medicated. That way, she does not have emotional outbursts and the chorea is under good control. Without meds, life in this house would be terrible.

Fortunately, she was diagnosed quickly and we found a good psychiatrist quickly, before she totally fell apart emotionally.

My wife's (age 52) progression regarding loss of coordination somewhat follows Fred's wife. She was diagnosed in mid-2000 (symptoms earlier), chorea was real bad by end of 2000. She was falling within a year, lost the ability to read (poor concentration) during 2001, and retired on disability in 2002. Due to falling, she cannot do any house work or personal hygiene. She might empty the dishwasher or make her bed on a good day. I expect that she will need part-time in-home care sometime during this year.

Ironically, my wife initially gained 40 lbs as depression occurred (before chorea began).

Dave

Proper medication is a key, I am excited to see the psychiatrist with her on the 9th, the neurologist admitted that this disease as far as medication, was getting out of his specialization and made the appointment for us so that we can get the proper doses of meds. My wife is 35 and your responses have educated me tremendously. As i have said in the past, if we all looked to the wise more often we wouldn't have to suffer as terribly.
Ken

Ken,

I applaud your neurologist for sending you to a psych. Ours did the same thing and it was SO valuable. My wife had a number of psychological problems and the neurologist could not handle them--apathy, chorea, anxiety, depression--and including panic attacks, sensitivity to certain music, itching spells, and even bowel problems.

We went through a number of medication adjustments over a couple of years before we achieved the optimum level.

My recommendation to you is to keep a journal. From one psych visit to another, you will forget significant things, unless you write them down. I rate each day on a scale from 1 to 5 (best) and (for a couple of years) plotted her days on a graph so I could show the psych in a few seconds her progression as he adjusted medications. A graph quickly showed how her depression would be OK three days and not good three days, and we worked to eliminate the wide fluctuations in her behavior--and succeeded (knock on wood).

As she improved, I would ALWAYS ask the psych, "...do you think she is as good as she can be or do you think we can still make some improvement by adjusting medications?" We succeeded in treating the depression by a combination of medications. And I am thankful the psych was not afraid to try high doses before he gave up on a medication, to make sure it would not work. Sometimes, you can have the right medication but too low a dose, and it appears not to work.

Every day, write a paragraph focusing on your observations of her psychological well-being. Her chorea was terrible and thank God for the medications that allow her to say, as she did today, "...sometimes, I almost feel normal." Note things such as apathy, fluctuations in her depression, irritability, sleeplessness, chorea, compulsive behavior, etc.

With seven medications, my wife has gone from a person with major non-stop chorea, panic attacks (resembling seizures), severe itching spells, depression (calling me to come home from work to be with her, weeping spells, would not eat or bathe or comb her hair), to a person who describes her day as, "...just great." "Just great" days are great in that she feels cheerful. She is unable to concentrate to read, can barely walk or dress herself and maybe just does nothing each day--but enjoys scanning magazines and catalogs, watching wildlife, or trying to read her Bible.. If she says her day is "...just great," life is great.

Best wishes.

Dave

Ken,

....pardon me for going on and on...but tell the psychiatrist EVERYTHING and be sure to sit in with the doc if at all possible. If your wife refuses to let you sit in with the doc, ask the doc to privately discuss issues with you. About 90% of what my wife told her psych was flat out incorrect, and without my observations, the doc really did not know how she was doing. At times, I could not believe my ears.

I'll be quiet.

Dave

Thanks Dave,
I will do as you said and keep notes, it is strange how the mind works, we had psych visits before we knew she had HD and as you had said your wife does my wife would tell this version of her reality that was mind boggling. So far off of the truth, i would step back and say to myself, where was i during these events. I am happy that your wife is better and i know through persiverance and pushing some of the docs to do there best, we also will come out with the best possible outcome.
thanks again
Ken

My aunt passed away of HD three years ago at age 64. This wonderful woman suffered from deep depression for nearly forty years prior to her death in January 2000. In addition to her depression/mental illness, she had a host of medical issues to contend with. She was under the care of a psychiatrist and was also hospitalized several times in her life. Her illness practically tore her marriage and family life apart. In the last two or three years prior to her death, she lost interest in her hobbies, which included; painting and garden club. She and her husband my late uncle) stopped entertaining friends at their home, she rarely left their home except for medical appointments.Trips to the grocery store and necessary errands became a burden on her. Their three adult sons wished to have limited contact with beloved mother because of her depression/illness. My aunt continually to over-medicate herself for many years with oodles of prescription drugs/pain killers. In January, 2000 she entered a Michigan hospital for back surgery. Three days after her procedure, my aunt lasped into a coma and
passed away a few weeks later. If only my aunt had the stength and willpower to change psychiatrists and reglulate her medications properly long ago, she may be alive today. Also, the orthopedic surgeron who performed her back surgery, should have been more " tuned into" her medical condition, prior to the operation. If he didn't feel competent, he should not have taken chance of risking a patient's life in his own hands. Heather "Emily Elizabeth"