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  • Outa + family

    I found this website only a couple of days ago and I suppose I've read most of the threads on this forum already. It was my original intension only to read, not to write, but since I found so many topics I would like to comment on I couldn't help myself from truly joining in.

    I have the diagnosis of ADD-PI, "Traits of Asperger" (an unofficial label which many of us well-pretending adult aspies get around here - especially if there are no childhood records or parent interviews available) + a tic disorder (in my case the very same reasons account for not getting the TS-proper diagnosis). My spouse would definetely be labeled as a TS+-person if he went to see a neurologist (complex vocals, complex motors, simple motors + multiple related OCD-symptoms, rage outburst etc.) but he has already retired and is well understood at home so there seems to be no point anymore for stressfull diagnostic procedures in his case. My son (9 years) seems to have ADHD + a waxing and waning OCD (on average "subclinical"), sensory hypersensitivities + some transient tics, but I haven't taken any steps to get him diagnosed so far as he might still outgrow some of his problems (as happened with some of his Aspie-like features) and the environment is a supportive one.

    I'm on a kind of a temporary pension at the moment: I got most of my pro gradu work finished with stimulants, but then the side effects got really beyond a tolerable level and all the other medications I have tried have failed as well. Because the combination of TS, AS + ADD makes most occupations all too stressfull for me and I'm rather happy dealing with my own special interests, the opportunities provided by the northern nature and so on, I can not really complain that much.

    My own tics started on the age of 4 with forceful and disturbing snorting. I have had many kinds of tics (from the simple motors to complex vocals) all my life long, but they are not really all too troublesome for me as my Aspie-nature doesn't really make me think all that much what how other people might perceive them. Mostly they are not of offensive character and are considered as funny or harmless by most - I would think...

    I get easily too excited, it is really hard for me to calm down and my stress has a tendency to accumulate to terrifying levels so living the quiet life is the only real option for me (unmedicated). I even have to run my pleasant activities down every now and then, really to step on the brake so to say before I end up into difficult insomnia, heart arrhytmias, myoclonus, fever etc. Besides of reading & writing about my current special interests, collecting connected items and roaming the wilderness I participate actively on a few AS & ADHD-forums being a moderator of one of them.

    I was really glad to find such an excellent forum as this happens to be, and I will definetely comment some of the threads in the near future. Right now my spouse is singing his self-made rhymes real loud and throwing forks forcefully to the sink, so I think it is time to stop writing here and give him some attention...

    Sorry for the bad English, this is the very first time I have written a forum post in the language... When I read Eglish I pronounce the words in my mind and I end up not knowing how to put them into letters again.

    *Edited the text 5 times, but there must be some spelling mistakes still in*

    Outa
    Last edited by Outa; December 29, 2011, 11:12 AM.

  • #2
    Re: Outa + family

    Hello Outa and welcome to our Forum. Don't be concerned about perfect use of the language, because you have made yourself perfectly understood, and if you had not mentioned anything, I would not have suspected English might not have been a primary language.

    In any case, the Forum software provides you with a spelling checker, at the top right of the message composition window, the one with the ABC over a check mark. You may have to downlod ieSpell, which is a perfectly safe and free add-on.

    Furthermore, if we notice any glaring spelling corrections to be made, our Forum staff will be pleased to help.

    Thank you for joining us and we will look forward to your particiaption in the days and weeks to come.

    I too am of retirement age, and during my childhood days, in an era of limited awareness of childrens' disorders, there was litttle or no opportunity for any help or suppport for families.

    Enjoy the Forum. Let us know how we can help.
    Steve
    TouretteLinks Forum

    Comment


    • #3
      Re: Outa + family

      Thank you Steve for a warm welcome! I will now give up on correcting the mistakes already made and I'm preparing to make new ones! As an Aspie my language is sometimes out of the ordinary even on my mothertongue, so a few more mistakes doesn't really count...

      I got inspired by the fact that my spouse seems to have some complex tics or compulsions I haven't seen mentioned anywhere - such as writing on notepads the dialogues from TV/radio or otherwise putting echo-/palialia into a written form... Not to mention vocalizing them as well.

      Hope I'll manage to write on those - and mine - later as well!

      Outa
      Last edited by Outa; December 29, 2011, 01:46 PM.

      Comment


      • #4
        Re: Outa + family

        such as writing on notepads the dialogues from TV/radio or otherwise putting echo-/palialia into a written form.
        Has your husband ever been evaluated by a mental health professional during his life? Has there ever beenany suggestion of OCD (obsessive compulsive disorder)?
        Steve
        TouretteLinks Forum

        Comment


        • #5
          Re: Outa + family

          No. He's good with supressing tics in social occasions or elaborating them to sound like jokes, pieces of songs etc. He also spent a good portion of his working hours walking by himself outdoors where no one was to hear anyway. During his last years at work he got a private room - no one was too willing to share it with him - and that made matters easier for him. In the end he didn't really bother to suppress them anymore around his closest workmates as they knew his tendencies well. Sometimes some people got a bit scared there when he thought he's alone in the building and shouted as loud as he possibly could, but situations of the kind were rare.

          At times of stress the noise here at home gets allmost unbearable for as familymembers and he becomes quite explosive. During this kind of a period he has promised me to get an appointment if some medication made our life a bit easier, but I know he's very suspicious about drugs and I know myself how stressfull trying different medications is, so we're still trying to cope without the official diagnosis + meds.

          OCD-wise there are times when it doesn't really bother him/us (he does a lot of checking every day, but it doesn't take a huge amount of time and can be seen as harmless), and then times when it really makes everything very difficult. As last summer, when there was a huge lemming migration in Lapland and our 2-week holiday was compeltely ruined as he got terribly neurotic about drinking water, bacteria, lemmings entering the house, contaminating something somehow etc. and was very agitated all the time.

          Many of his symptoms might be seen as compulsions but they do not have a goal of preventing something, nor are they specific for certain situations or allways repeated the same manner. For example he arranges stuff in "bouts" with out an obvious goal, pokes, squeezes and grabs people/items when going by, throws objects all of a sudden etc. so I'm prone to see these things as complex tics because they are so random and tend to show up at the same time.

          Comment


          • #6
            Re: Outa + family

            When any kind of behaviour, whether it's involuntary or caused by other causes, when it begins interfering with a person's quality of life, or their relationship with family and friends, should be evaluated by a competent medical professional, because many of these behaviours are treatable.

            Just because your husband may have lived with some of these behaviours for most of his life, and perhaps feels comfortable with them, if they now disrupt your home and family, it would be to his benefit to receive treatment.

            I know he's very suspicious about drugs and I know myself how stressfull trying different medications is, so we're still trying to cope without the official diagnosis + meds.
            Some people feel that using medications means they give up control of their destiney. On the contrary, by understanding that these are medical disorders, thought to be caused by chemical imbalanaces in the brain, and ratinally chosen medications by a competent mental health specialist can usually restore the right chemical balance, and hopefully relieve the symptoms.

            During this kind of a period he has promised me to get an appointment if some medication made our life a bit easier
            Make the appointment, go with him to the doctor and explain the situation from your perspective, which is often more informative than relying recounting of the person being evaluated.
            Steve
            TouretteLinks Forum

            Comment


            • #7
              Re: Outa + family

              My son (9 years) seems to have ADHD + a waxing and waning OCD (on average "subclinical"), sensory hypersensitivities + some transient tics, but I haven't taken any steps to get him diagnosed so far as he might still outgrow some of his problems (as happened with some of his Aspie-like features) and the environment is a supportive one.
              BTW:

              Studies from the National Institute of Mental Health suggest that very early onset (before age seven) of OCD in boys may be related to Tourette’s Syndrome, a disorder involving multiple sudden, involuntary movements called tics.

              The Impact of Obsessive-Compulsive Disorder | Psych Central
              In any case, given the family history, I would not assume anything is just a phase. Your son seems to have a lifetime vulnerability to something.

              Even shyness, if not addressed, can increase the risk of depression or anxiety in late adolescence, etc:

              A Closer Look at Social Withdrawal and Nonsocial Play in Early Childhood
              Last edited by Floridian; December 30, 2011, 11:41 AM.

              Comment


              • #8
                Re: Outa + family

                Oh certainly I know my son is no NT either, that came quite clear already on the days following his birth. But I'm afraid he would be labeled as having only a sublinical ADHD as he has no striking problems at school or with behaviour -he's more of the shy, sensitive and forgetful kind of a person. These days he is busily socializing with his friends most of the time and is seemingly a happy little fellow outside of the hour before going to sleep - that's when his obsessive fears tend to get a hold of him and these attacks can be dramatic at times. Then again there are lengthy periods without any OCD-related symptoms what so ever - especially during and after holidays, when there is or has been less social or anticipatory stress for a longer while.

                My grandfather and father had tics as well, so I'm only expecting them to get a firm hold of my son in a few years - or maybe he'll be lucky and have only the burden of some OCD-related issues - too early to tell for certain.

                What comes to the old man we do get along pretty well for the most of the year - after the summerly Lemming Episode everything went well untill he quit smoking 3 weeks ago. These weeks have been quite hard for the both of us - my son is on a holiday in the south for these weeks and has been mostly spared. At the moment things are getting close to the baseline level, so the motivation to seek professional help is on a decline again, I'm afraid.

                Personally I have nothing against drugs but after rallying with medications for 6 years in a row I also freshly remember that for persons with multiple problems (such as a combination of ADHD, tics, OCD) suiting medications (or combinations of them) are sometimes very hard to find. As we live in a small rural community I can't much trust there would be a well informed doctor just waiting for us to step into his office - and traveling across the country (who knows how many times) to see a private, specialized doctor would cost us a fortune we don't yet have.

                Yes, it must be my own OCD-traits that make me see everything going wrong if I made a true effort, but maybe writing these things down and reading your replies is building some confidence, I hope. Thank you for your kind and well informed replies.

                Comment


                • #9
                  Re: Outa + family

                  Personally I have nothing against drugs but after rallying with medications for 6 years in a row I also freshly remember that for persons with multiple problems (such as a combination of ADHD, tics, OCD) suiting medications (or combinations of them) are sometimes very hard to find.
                  Generally speaking, the most effective treatment in the long-term for OCD or other forms of anxiety is cognitive behavior therapy. There are even children books and books for parents about OCD and anxiety now.

                  For true AD/HD, it's basically a miracle how well stimulants (and other AD/HD medications) work in the vast majority of patients (like 90 percent). But I assume there are also behavioral strategies that child psychologists recommend. Exercising more often, for example, is recommended for adults with AD/HD as a way to help with concentration (as is getting a "coach" to help with executive functioning).

                  Anyway, I really don't see how it would hurt to get a psych evaluation done. Even if you have to pay out-of-pocket and drive for a few hours, a little prevention is a lot cheaper (and more effective) than a pound of treatment later on.
                  Last edited by Floridian; December 30, 2011, 01:49 PM.

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                  • #10
                    Re: Outa + family

                    I'm well informed about these matters, and I had a great response to MF - the physical side-effects just grew intolerable in 3 months. In know I'm a rare case (especially in developing some symptoms of autoimmune diseases) and I always advise people to try them as most get great benefits without nasty side effects.

                    Meeting all the required criteria of a given disorder seems too be quite a burden for many people - without the diagnosis the society will not financially support any therapies, nor will the doctors write presprictions. I know a few good doctors who are often able to identify the true problematics of a given patient and treat them accordingly even if not all the criteria are completely met, but their practises are some 800 km away from here... One of the problems in Finland is that many doctors still see OCD as the opposite of ADHD, and are not willing to diagnose not to say medically treat the both of them - only because their information is out of date and mostly they don't like patients questioning their professional knowledge with print-outs from the internet.

                    At least my son has quite some knowledge on things like OCD, tics and working memory deficits, and some times I laugh secretely as he asks me to sooth him "so that my levels of oxytocin would be on the rise and make me feel more relaxed"... So at least he knows he's problems are not "his fault" and even knows how to make himself a bit better at times.
                    Last edited by Outa; December 30, 2011, 02:13 PM.

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                    • #11
                      Re: Outa + family

                      At least my son has quite some knowledge on things like OCD, tics and working memory deficits, and some times I laugh secretely as he asks me to sooth him "so that my levels of oxytocin would be on the rise and make me feel more relaxed"... So at least he knows he's problems are not "his fault" and even knows how to make himself a bit better at times.
                      That sounds good, but I would think it's hard to be objective when it's your own son. (For example, there is Winnicott's notion of the "good enough" mother. Too much mothering -- e.g. too much reassurance -- can backfire.)

                      A lot of people are not fans of psychiatry, but do you have anything against psychologists?
                      Last edited by Floridian; December 30, 2011, 02:24 PM.

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                      • #12
                        Re: Outa + family

                        Not as far as they have some knowledge of neuropsychiatric disorders, this resulting in not trying to make the patient NT but taking the neurological differences into account and supporting to find good coping skills. Actually I personally know one such childpsychologist by accident, and I'm sure she would get well along with my son and it would be of benefit - but she, too, lives in the capital area.

                        I have had a great psychiatrist specialiced on AS, ADD and the like, and she kept on seeing me for years - even against the tight rules - so I certainly have nothing against them in general. She truly did everything there was to be made for me and I'm in deep gratitude for all her efforts. Unfortunately she has no private practise.

                        Comment


                        • #13
                          Re: Outa + family

                          I'm happy to tell that my husband agreed on seeing a private specialist some 300 km away from here. He does not believe that any medication would make a difference - tics and OCD are the constitutes of his personality and he can not imagine him otherwise being 64 - but he would like to reduce his noise and to be less irritated by disorganization, odours and so on. I think this forum gave me some courage to reintroduce the topic as I read/translated some of your experiences and my hubby could comment on these on his own experience.

                          Thank you all a lot.

                          Comment


                          • #14
                            Re: Outa + family

                            I am very pleased your husband has made a choice for himself to deal with some of the issues that cause him some concern or discomfort. His effort should also benefit the rest of the family.

                            He does not believe that any medication would make a difference - tics and OCD are the constitutes of his personality and he can not imagine him otherwise being 64
                            Yes, I agree, being of the same approximate vintage myself. Having lived this long with the expressions of Tourette are now a strong part of who he is (who we are), and if the expressions and tics do not damage either his own or your family's quality of life, then there is no sense to try to address them.

                            However, if some of the associated (co-morbid) behaviours of his Tourette are a cause for concern or by modifying some of them might improve quality of life, then I completely agree with his initiative.

                            In fact associated behaviours such as organizational skills, that might be partof attention deficit, or obsessive compulsive behaviour, these types of behaviours can often be easily controled by some common and easy to use medications, which if combined with some cognitive behavioural therapy could help improve his quality of life dramatically.

                            Age 64 is on the threshold of a long and exciting time in both your lives, and any improvements that can benefit the quality of life of the family and of your relationship together is well worth trying.

                            We will be looking forward to hearing about the progress that is made.

                            Have you ever looked into the Tourette Organization in Finland?
                            Steve
                            TouretteLinks Forum

                            Comment


                            • #15
                              Re: Outa + family

                              It is mainly the OCD causing the problems (you have probably read about the Lemming Episode, it makes an example) together with a very high baseline level of anxiety. I think that getting some control over them (in the best case even ssri-monotherapy could be of substantial help) might make him feel a way easier in general and that could lead into a reduction of tics as a by-product (as he has substantially more of them under stress).

                              Even mentioning the word "therapy" might make him go straight through the roof. I'm more than happy if he gives the medication a chance and I'm not asking for more. Having things a little easier would be good enough for us.

                              Yes, I am aware of the TS organization of Finland and I will be contacting someone there in case they have a list of doctors familiar with the disorder.

                              Thank you for your reply, I will update this thread one day - I hope.

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