Our outdoor wedding, before we learned about ADHD. Notice the dripline. 
My foray into the field of ADHD began by chance. In 1999, I picked up a library book about the brain. And what I read changed my life and my husband’s life. Funny enough, that book was Dr. Daniel Amen’s Change Your Brain, Change Your Life.
In that book, I read about something called Adult ADHD, and suddenly I had a clue why, as much as we loved each other, my then-fiancee and I were driving each other nuts! Knowing that his education as a neurogenticist meant he could actually authenticate the science behind such a “condition,” I showed the book to him. “Doesn’t this sound like you as a kid?” I asked. ” And, well, doesn’t it sound like you now?” He agreed. And off we went to navigate the mental healthcare maze. Meanwhile, I figured other “partners of” were in a similar position, so I started an online discussion group so we could all help each other find out way.
It’s not enough to say that I was stunned at the widespread ignorance about ADHD, including among professionals. Frankly, I was outraged. There is quite enough suffering in the world that cannot be prevented. The suffering that comes from unrecognized ADHD is not one of them. We have a strong knowledge base about ADHD. We have good treatment strategies. All we lack is more people willing to step into the 21st Century.
Deciding to put to use my background as a print journalist, I became a very persevering advocate for better awareness and evidence-based treatment standards—by lecturing, writing, and leading discussion groups in Silicon Valley and a 600-member Internet group for the partners of adults with ADHD internationally. Oh, and yes, you’ve probably seen my comments around the Internet. When you are an unpaid advocate for 10 years, you go to war with the army you have: a keyboard, a deep knowledge base, and the ability to type 350+wpm.
After a few years, the need became clear for a nuts-and-bolts guide to Adult ADHD, especially as it affects relationships. We needed guide not only to understanding Adult ADHD symptoms but also the “emotional baggage” that comes with late-diagnosis — baggage carried by both partners in the relationship.
I also sought to provide readers with a consumers guide to Adult ADHD treatment strategies — the particulars of therapy to seek (and avoid), the medication protocol that so few prescribing physicians seemed to know about (and perhaps that’s why so many people had unnecessary side effects), and, that big deal breaker: how to get through a loved one’s “denial” about ADHD.
That’s why I wrote Is It You, Me, or Adult A.D.D? Stopping the Roller Coaster When Someone You Love Has Attention Deficit Disorder (1201 Alarm Press, San Francisco). I am grateful to the many top experts who granted interviews, fact-checked chapters, and endorsed the book. The book has won four national book awards and, last I checked, has 65 five-star reviews on Amazon. It’s a guide I am thrilled to be able to hand to people who are struggling. (Because, after all, I couldn’t keep typing the same piecemeal advice in our support group for another 10 years!)
Book signing, after my presentation at the CHADD International Conference on ADHD, 2009
You can purchase the book at:
- the book’s website, where it comes with free shipping and free PDF of the book — uploadable to some electronic readers and useful for printing out pertinent pages for a loved one, therapist, physician, etc.
- Amazon.com, and Barnes & Noble.com
- Barnes & Noble stores. To locate a store near you, click here.
The book and my unpaid advocacy have been a giant labor of love for several years now, and is my greatest joy to have connected with so many thousands of people and played a small role in elevating their lives.
In addition to sharing the results of The ADHD Partner Survey, this blog will contain some book excerpts. I hope you will augment both with reader comments, so that public benefits from your hard-won knowledge. Your comments might just could profoundly change someone’s life.
You can learn more about my journalistic credentials, awards, portfolio, etc. at my very outdated website (yes, it needs updating, but no time right now!): http://www.GinaPera.com
Thank you for your interest in Adult ADHD, and please try to keep an open mind if you are just beginning to learn about it. One fact is clear: ADHD is real, and it affects real people’s lives. Maybe even your own or that of someone you love.
Best wishes,
Gina Pera
Email Gina Pera
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do you have an online support group for partners of people with adhd?
do you know of any support groups in the Bay Area for the same?
I am at my wits end – i am not familiar with blogs, so trying to figure out how it all works in my current state seems like too much
thank you -
Hi Mary,
As a matter of fact, I posted some information on that very topic last week — in my other blog:
http://adhdrollercoaster.org/the-basics/finding-support-for-adult-adhd/
This ADHD Partner blog shares the results of a survey I conducted to learn more about the effect that ADHD has on relationships.
The ADHD Roller Coaster blog is more generally focused on Adult ADHD issues, including relationships, money, health, and more.
Thanks for asking!
Gina -
Hi Gina,
My husband finally agreed to try medication over a year ago. The first 2-3 months were great but it’s been downhill since. He is more aggressive and self centered and has frequent rages. I have called his medical psychologist and he says he can only help my husband if HE asks. My complaints about his vyvanse (50mg) fall on deaf ears. My husband is so defensive I can’t even talk to him about this. All he says is…you wanted me on meds, I’m on them and you’re STILL not happy. He says all meds are the same and I AM NOT GETTING OFF OF THIS MEDICINE! The medicine has made it worse but he is unable to see it. He has started smoking cigars on a daily basis and still consumes lots of caffeine. He is also having some issues with his lips getting sunburnt and cracked…and I’m sure it’s related to the vyvanse. I don’t know where to turn at this point and I am ready to leave him because of his verbal abuse. Any suggestions would be appreciated!
Sophie -
Hi Sophie,
I’m so sorry to hear this. Far too often, “getting on meds” is done without careful protocol and slow titration. One act of carelessness by a physician has ripple effects on an individual’s (and couple’s or family’s life) for years, often decades, and sometimes generations. And I wish I could say that I didn’t hear of such carelessness every day.
His prescribing professional should be receiving your input. In fact, your input should have been solicited for it all along. To not do so it is to show reckless disregard for the patient as well as for the potential side effects of the wrong medication for that person or the wrong dosage.
It’s stories like this that give stimulants a bad name and discourage others from trying them. And that is a tragic loss.Anecdotally, I’ve heard this happen more with Adderall than with any other single stimulant. Vyvanse is also in the amphetamine class of stimulants, and though it apparently has a lower side effect profile than Adderall, the amphetamine class is known for creating this kind of irritability, etc. at too-high a dose or after a few weeks (for complex reasons). Also anecdotally, I have seen this “first two months great and horrible thereafter” pattern happen many times over the years with the amphetamine class of stimulants.
The fact that your husband is also consuming caffeine and smoking cigars is troubling, as caffeine can exacerbate a stimulant’s effect. And so can the nicotine in cigars. In short, your husband is playing fast and loose with not only his neurotransmitters but his cardiovascular and respiratory system. I hope you have a life insurance policy if you are depending on him financially.
You say a “medical psychologist.” I don’t know that term. I know that in some states psychologists who have a masters in pharmacology can prescribe. Perhaps that is the case?
My suggestion would be to send a certified letter to this prescriber, detailing the side effects of the medication and cc’ing a copy to your attorney. Very cut and dry. Bullet points. When someone is on the wrong medication, it can create poor judgement in matters that affect not only the individual but also the family. This prescriber should be held accountable. Privacy laws prohibit a care provider from discussing the case with anyone but the patient. But my understanding is that care providers can receive information from spouses or family members and take it into consideration. This care provider has the choice to continue renewing the refills or to stop them until your spouse comes in for further evaluation. I hope he does the latter. Best of luck.
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Gina,
Thanks for your input. I have spoken to the psychologist and followed up with an email. I am on my husband’s HIPPA for now. In LA a psychologist can get further education, take a test and be able to prescibe meds. I don’t think it is comparable to a masters in pharmacology. The psychologist keeps saying that he can’t do a thing unless my husband tells him he is having problems and that I can only come in if my husband asks me to. My husband does not want me to come with him. He says it’s between him and his doctor and doesn’t want or need my input. I did go with him on the first visit and again on a follow up visit when I expressed concern about his increased aggression when the dosage was increased. It was after that visit when he flipped out in the office and he said he didn’t want me to come with him ever again. The psychologist has since raised the dosage again (I only know this because I checked the meds when he started getting more aggressive). My husband things all is going well for him. His only problem is ME!! He blames his outbursts on me and seems to have NO remorse or even recall of what he has said or done.
It looks like he has more that ADHD…he acts like he’s had a traumatic brain injury. He does have a positive family history of depression and anxiety disorders. I think he is both depressed and has anxiety. I really think we need a new doctor but have been unable to find anyone who seems knowledgable about AADD. The guy he sees now is with an ADD clinic…all psychologists in private practice. I have tried to contact the only CHADD group in the state but never heard back from them. I wonder if he needs to see a psychiatrist. I’ve been told that there is a shortage of psychiatrists in the area and they see those with more severe psychosis. I would go anywhere in the LA/Houston area if there was a good doc. Should I consider Amen clinics if I could possibly get him to agree? But realisitically, I don’t think my husband would go for that. He said he is not ever going back to another doctor for me to get him “fixed”. He said he is fine and I can go fix myself.
Another concern is he has a new set of friends who eat,smoke and drink excessively. These are motorcycle riding buddies but I don’t think they drink while riding. This is when he started the cigar smoking and now he has 3 humidors full of cigars (nothing in moderation). He is 57 years old and is acting like a teenager with a new set of bad friends and I feel like his mother warning him of their bad influences. Incidentally, I have been going through this hell for 30+ yrs.
Oh, and I do have life insurance…got a big policy when he got the Harley but I don’t have an attorney. Should get one!
I am hoping the psychologist uses the info in my email to re assess the situation but I have no control over this. I agree that he is assuming a lot of liability if he does not react to my concerns as I have urged him to not continue prescribing this medication. My husband also has an addictive personality so I’m worried that the stimulants are not a good idea. It seems all has gotten worse as he went from 20mg to30 to 40 to now 50mg. I wonder if trying Wellbutrin might be a good option and see how that goes. Any suggestions to how I might find a better physician would be greatly appreciated.
Oh, and I do have life insurance…got a big policy when he got the Harley but I don’t have an attorney. Should get one!
Thanks.
Sophie -
Gina,
Thanks for your input. I have spoken to the psychologist and followed up with an email. I am on my husband’s HIPPA for now. In LA a psychologist can get further education, take a test and be able to prescibe meds. I don’t think it is comparable to a masters in pharmacology. The psychologist keeps saying that he can’t do a thing unless my husband tells him he is having problems and that I can only come in if my husband asks me to. My husband does not want me to come with him. He says it’s between him and his doctor and doesn’t want or need my input. I did go with him on the first visit and again on a follow up visit when I expressed concern about his increased aggression when the dosage was increased. It was after that visit when he flipped out in the office and he said he didn’t want me to come with him ever again. The psychologist has since raised the dosage again (I only know this because I checked the meds when he started getting more aggressive). My husband things all is going well for him. His only problem is ME!! He blames his outbursts on me and seems to have NO remorse or even recall of what he has said or done.
It looks like he has more that ADHD…he acts like he’s had a traumatic brain injury. He does have a positive family history of depression and anxiety disorders. I think he is both depressed and has anxiety. I really think we need a new doctor but have been unable to find anyone who seems knowledgable about AADD. The guy he sees now is with an ADD clinic…all psychologists in private practice. I have tried to contact the only CHADD group in the state but never heard back from them. I wonder if he needs to see a psychiatrist. I’ve been told that there is a shortage of psychiatrists in the area and they see those with more severe psychosis. I would go anywhere in the LA/Houston area if there was a good doc. Should I consider Amen clinics if I could possibly get him to agree? But realisitically, I don’t think my husband would go for that. He said he is not ever going back to another doctor for me to get him “fixed”. He said he is fine and I can go fix myself.
Another concern is he has a new set of friends who eat,smoke and drink excessively. These are motorcycle riding buddies but I don’t think they drink while riding. This is when he started the cigar smoking and now he has 3 humidors full of cigars (nothing in moderation). He is 57 years old and is acting like a teenager with a new set of bad friends and I feel like his mother warning him of their bad influences. Incidentally, I have been going through this hell for 30+ yrs.
I am hoping the psychologist uses the info in my email to re assess the situation but I have no control over this. I agree that he is assuming a lot of liability if he does not react to my concerns as I have urged him to not continue prescribing this medication. My husband also has an addictive personality so I’m worried that the stimulants are not a good idea. It seems all has gotten worse as he went from 20mg to30 to 40 to now 50mg. I wonder if trying Wellbutrin might be a good option and see how that goes. Any suggestions to how I might find a better physician would be greatly appreciated.
Oh, and I do have life insurance…got a big policy when he got the Harley but I don’t have an attorney. Should get one!
Thanks.
Sophie -
Sophie — I suggest you re-read my book’s chapters on medication. It would be a good idea for this prescriber to read them, too, as he does not seem to understand what can happen when the AMP stimulant is too high or when it exacerbates comorbid depression/anxiety. Often, another medication is needed, or a lower dosage of the AMP.
I would ask this psychologist what protocol he is using, did he use rating scales, does he realize that too-high a dosage can lower insight, etc.? I would put this in writing, in your certified letter. Never know. It might come in handy some day.
Best of luck.
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Gina…wanted to let you know my husband went to the Med Psy last week. I sent a detailed email prior to his visit. His med was changed to Concerta(36mg) in the MPH class. He has
had a drastic change in the right direction! He is calmer and says that he is not nearly as tense. He focuses but not so intensely. He can take breaks and overall seems far more balanced. He even came to a ballet with me Sat nite with no fighting afterwards. He used to always pick a fight after we socialized with others. I am cautiously optimistic since he had positive results on the low dose of vyvanse for those first two months. He was clearly on too high a dose of the vynanse but I think changing the class of stimulants was a good move. He is not showing signs of anxiety at this time. He reports that he is far more relaxed. I have made a copy of the med log sheet from your book and we fill it out together each night. He is welcoming my input and is not even defensive! I am hoping that if we keep close tabs on the benefits and side effects, we will less likely to repeat the last “year from hell” we just experienced. I would still prefer to find an experienced psychiatrist but will take what I can get for now. I’m just grateful he is finally off the vyvanse. Thanks for your input. This really is “new ground” and having others feedback is invaluable!
Sophie -
Hi Sophie,
I am so happy to hear this! You made my day.
Even “experienced” psychiatrists often don’t know about these nuances. It’s just the way things are, so it pays to be your own advocate.
Please give each other a hug from me!
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Gina, My husband was finally diagnosed at around age 55 with Adult ADD and is now on medication. This after years of confusing behaviour that had a traumatic effect on our family both emotionally and financially. Your book was instrumental in saving our marriage in that it gave me understanding of so much that had taken place in our 20 years together. I am now able to identify the behaviours as attributable to this disorder and it has in a way enabled me to identify with his stuggle and given me so much more understanding and opened up communication with him that was all but lost. However the years that came before the diagnosis, and since as many of the behaviours though now more controlled are still there, have been particularly hard on our now 18 year old son who is extremely angry with his Dad. I have tried to show him that, while not necessarily excusable, there is an explanantion for what has taken place. It does not take away for him the frustration and years of hurt and broken promises. Our son has reluctanly spoken to therapists on two different occasions, the second time to determine whether in fact he also has ADD. The therapist determined that he did not after one session (I personally question that) but at our request spent more sessions with him to see if he could help him with his anger. Our son was not very receptive to him and the therapist determined that he was fine, just a normal, very intelligent 18 year old who did not have any animosity towards his Dad and he would do fine. I would like him to live in our house for a month.
Yesterday I got from our son amidst angry words, cursing and tears the clearest communication yet of what he was feeling inside and a sense that he did not want to feel these things but does not know what to do with them. I told my husband and his reaction is that there is nothing he can do about it. He does not understand how hard it has been for us or that he could be very instrumental in helping our son. Our son is leaving for college this fall and my hope is that he will find his identity apart from us and that he will be able in time to look on things differently but I would also like to find someone that we as a couple could talk with to help us know how to help him.
I have little confidence in therapists after both my husband and son have not found help there. How do we find someone in our area (Des Moines IA) that will truly help us to continue to work through these things and heal our family. I have googles therapists but there is no way to tell whether in fact they have a clue. Our other child is an 11 year old daughter who has also been diagnosed with ADD after encouragement from her teacher to pursue that and is now on medication.
I look forward to reading your thoughts, thanks,
Sarah -
Hi Sarah,
I just receive this post from you (dated July) so apologize for late response. I have no idea what happened.
I’m so sorry you’ve had such distress around ADHD in the family.
From the sound of things, you are on your own to educate yourself about ADHD and think for yourself whether your son fits the diagnosis. Unfortunately, many therapists have not one clue. If your son just had a short interview with this therapist, I doubt that therapist is trained in evaluating for ADHD.
For one thing, she/he should have asked the parents AND teachers to fill out a symptom form (there are many options). If she “evaluated” your son based solely on her limited questions and his circumscribed answers, well, that was a waste of money and time.
You don’t mention any other symptoms your son might have, though, other than unclear communication (?) and anger. While anger and irritability can be a component of ADHD, it sounds like he had much to be angry about. Especially now a father who sounds very passive in his reactions to his son’s emotional outpouring.
Perhaps the best way to help your son is for your husband to keep pursuing ADHD knowledge and self-knowledge so he can better reach out to (and apologize to) your son. Maybe a letter is best.
Sometimes when a child leaves home, they can be a little more objective.
As for finding a therapist, you could interview them, ask them what books they’ve read, what their approach is. If you’ve read my book, you’ve learned what answers you should be hearing. If you don’t, keep dialing!
Honestly, I think that if an educated effort to identify a local therapist falls flat, you just have to do it yourself. Keep reading and talking about it. Also, check out the videos on my blog. Perhaps you could watch them together and talk about the ideas/situations therein.
good luck!
g
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