We did but not with a study to back it up. I know the protocol for genetic testing is being reworked... this study might be a useful tool. Rather than relying strictly on prescreening types of counseling maybe identifying who needs post-event counseling would be a good idea.

[www.genomeweb.com]

Yes, I was VERY surprised that I didn't get a follow-up phonecall within the first 2 weeks after my results....

Even though I was not clinically depressed either before or after, and think I handled things better than average, I still would have liked a call. It seems like those who were depressed either before or after, would certainly benefit from more than that, like additional appointment(s).



Edited 1 time(s). Last edit at 03/18/2010 07:46AM by smiling sara.

Where was your test conducted Sara?

Just saying Ohio here; PM'd you. It was anonymous, but they had/used my real phone #.

Actually, I got a call from their Data Center a week later, wanting to "update my address" (since I had not given one). Um, no, and please lose my phone number.



Edited 2 time(s). Last edit at 03/18/2010 07:50AM by smiling sara.

That wasn't a CoE then. It's pretty hard to insist that everyplace that can test for HD follows any protocol. But as far as I know follow up visits aren't routine, even at our CoE's. I am not sure they are very often if ever set up with a psychologist either. Social workers try to sort of fill that role as do doctors in other fields... but I feel that maybe having some psychological resource available would be pretty valuable. Even if just for testers exclusively. Personally I think if they had a full time person on hand that that might be the busiest office of the center. If you look through this forum... social work questions in the strictest sense are far fewer than psychological issues. Groups are good... but some issues just need that one on one touch that groups don't handle and social workers really are not equipped to handle.

Well I did see a psychologist prior to testing, as part of the protocol. I didn't realize that not everyone does.

I had thought about contacting HIM afterwards, to see if he'd write a script for an SSRI like Paxil as neuro-protection, even though I'm not depressed. But lost my nerve.

Would have also LOVED to have been offered 2-3 days worth of a stress-control medicine. For the night before & after I got the results. Instead I combined wine and NyQuil.

And again, I am someone with a great support system (husband, friends) and NO psychological issues.... So again, it really makes me wonder how other people cope.

They probably use wine and nyquil too. I never thought of it, but sometimes dentists give ya a pre app medication... and people can get one for flights. But for test results you do it "dry". Of course that is all bandaid and not helping with long term stuff one may go through.

Think you would have gone back in if he had called and offered?

I don't know if I would have gone back or not. I would've discussed the option with my husband; I think he may have benefitted more than me....

Like you touched on, I think there should also be support offered for spouses/future-caregivers.

Sara - psychologists can't prescribe meds.

Psychiatrists and MDs can.............

jl

Oh, I didn't realize that! Saves me from further consideration of that phonecall....

But STILL, in my opinion, protocol should include a meeting with someone who can prescribe something for stress or depression, either short-term or longer-term.

A psychologist can't prescribe but if they are in the same building and trusted in their assessment, a walk across the hall will get you what you need. They often make recommendations which are followed.

Interesting... when we went to get out results, somebody was there to study something, but, of course, I don't remember exactly what because I didn't authorise the guy to be in the room. I thought it was rude to study people when they were getting the worst news of their lives. I particularly remember that this guy had this smile on his face and that made me so angry! Now I feel guilty... maybe he was just trying to be nice? And maybe his work was important to improve things for others in the future? All I know is I didn't want him in the room at THAT moment.

Anyway, I don't even know why I'm commenting on this... this just reminded me of that guy...

But overall, I think there shouldn't be just one unique protocol for the before and after testing. Not everybody has the same needs (the old protocol we used to have in Canada would have driven my husband and I crazy). I think different options should be available, so that you can choose the best one according to your needs. And I agree, this should include options for those who are closer to the person who tests.

Luz,

You are right on the mark when you say that post-appointment follow-up should be offered and available immediately after the results are given. People should go from recieving the news then move right away into a psychologist's office. Recieving news of a positive result is such a shock.

As spouse I was particularly devistated with the news because all along I had been thinking the results would be negative because my partner was well beyond the typical age of onset. Whereas, my spouse was prepared for the positive result because he had noticed symptoms in himself which he did not share with me. This was what led him to want to get tested in the first place.

I thought the level of support for being a couple after receiving such shocking news was terrible. Nothing was offered to us. We just went home and I cried for weeks.

Well lesson learned Luz. If you are uncomfortable with something speak up. Either they will get ya comfortable or ask them to leave. We all but one time used teaching hospitals. When Teresa was delivering my first son the vacuum was new. They asked if the procedure could be observed. I never counted the exact amount of people... there had to be ten doctors and nurses in there. Now for me that was good... I listened to lecture... for T... ten staring where they were, well, she was a good sport.

Every HD visit has had "kids" in the room hanging out. They gotta learn. And we are all clothed for those.. Not looking forward to my first colonoscopy though... but still if there is a kid who can learn... oh well. I hope they dislike it as much as I will...

Luz,

What did exactly did you expect as a "level of support"? Did you want an appointment with a psych? I'm sure if you had called and asked, they would have done it for you.

I got the news both times about my loved ones over the phone. I can understand the stress.

Fred,

Maybe I didn't express myself very well... or was you question really adressed to concerned partner?

I wasn't complaining at all about the process because I think we were offered exactly what we needed, which was an extremelly simple process in which we didn't need more than one appointement with the genetic counselor... no forced appointements to get a psychologist's approuval to get tested or anything like that. With the old protocol, you had to go through a lot more stuff to actually get tested. My husband just would have hated it and it would have only made him feel more stressed about the whole thing. That's what I meant when I was talking about having different choices (not wanting to see a psychologist being one of them!) and not the same protocol for everyone. And those choices should include immediate psychological support at any point in the process (before or after and for partners, too). The whole "one formula" thing was my point, because I don't think there is just one...even getting the news by phone should be one of them... I hope it was your choice because I'm really sorry if it wasn't and you needed other kind of support.

Concerned partner,

I'm really sorry you din't get the support that you needed. It was very hard for me, too. I wouldn't have wanted to see a psychologist right away because I'm more of a lonely mourner, but I would love it if this options were avialable for people who do need them.

Eric,

You always know how to make us all laugh

when i tested in 1996, it was a pretty good process. Going through all of the appointments leading up to the results, i honestly did not know what the outcome would be, but i think they did an awesomes job taking care of me. i had other issues outside of the test itself - which from what i have heard, some people's results were delayed because of it - but my team never slowed down. They were open and honest, and so was i. I was nervous of course, but determined to know.

I had also been called to court, to testify for my sister karen, (or against her, as she thought at the time) and that distracted me along with the issues at home.

After the results, i had one appointment 2 weeks after, to make sure i was alright with the outcome. I was negative, but they were concerned that with so many of my family HD+, i would have survivor's guilt. I then opted for one more appointment after that. It was very helpful, and of course, the results would probably make a difference as to how it all made me feel. But i don't know. I will never know how it feels to be told the opposite, and i can't even guess as to how i would have behaved, if different.

I was tested at Albany Medical Center, Albany,NY.

Hugs,
Suzanne

I think it would have helped me a lot to have had some kind of support after.



Edited 1 time(s). Last edit at 06/22/2010 04:02AM by Barb.