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Old 17-02-16, 05:38 PM   #1
nobes02
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Join Date: Feb 2016
Posts: 8
Default Looking for help/opinions

HiÖ I am new to this site. I have never done the forum or group route beforeÖ I am Zach. I am 27 years old and have had HD in my life for 3 generations. I was tested at 18 and got a result of positiveÖ I am married and do have friends but itís hard to talk to them about the HD stuff since they donít really understand and there is nothing they can do to help it.. And I have a hard time lately finding the motivation to even make plans with them if they arenít the ones to initiate itÖ I feel like I have started to get a little apathetic toward things I really used to likeÖ but mainly I really really would like to vent for a minute and it has been really helpful reading some of the stuff others have posted. Please tell me if you think I am being crazy and if itís all in my headÖ If anyone else has had similar experiences I would really appreciate hearing about them.
I have noticed in the last couple years that my short term memory has started to get really bad, in my job I work with a lot of meetings and a lot of scheduling things. I used to be extremely good at this. I have always been extremely organized. I have noticed that in the past 6 months I am forgetting to add people to meeting requests and emails. I am scheduling them for the wrong days or times even though it is written right in front of me. I know to many this doesnít seem like to much but for me it feels huge. This was one of my greatest qualities and it feels like itís slipping. Like I am slipping. I will be leading a meeting which is half of my job and my brain will just blank out. I call it a brain reset, but basically in the middle of a sentence I will forget what I was saying or talking about.. and if someone doesnít remind me I usually wonít be able to remember. Itís the most annoying thing. It happens in regular conversation too but that I can generally handle.
I have also noticed increasingly over the past 3 years or so that I am getting mad at my significant other for stupid stupid stuff. I never notice in the moment, and sometimes it may be something that is a small insignificant thing, but I get so mad about it, like unrealistically mad and I just canít seem to let it go. A few days later I may look back and realize that it was uncalled for but there is nothing I can do about it. I apologize and he generally holds no grudges about it. He is pretty awesome like that.. But when I tell him I am afraid because I think it may be some of the early stuff from my HD he will always dismiss it as I probably had a stressful day at work or something else. I donít blame him for this because he has no idea what to do with it, but I have found it hard to talk to him about it now.. I should probably note that I have never been an angry person.. I have always disliked people who yell and get mad for stupid reasons but now I canít seem to help myself. And though I find myself worrying about this stuff more as it gets worse, especially the organizational/work stuff, I donít really feel like I can tell anyone at work. I donít know 100% that HD is causing this and even if I did it would feel like an excuse for those who donít know much about it.

Any Advice has anyone else had this kind of stuff? I would really appreciate itÖ I know I am only 27 but I am afraid to even bring it up with my doctor since itís all mental and reasonably could all be attributed to other stuff and other than slips and trips I donít have much for physicalÖ and everyone slips in ND.. itís very icyÖ My mom (a wonderful woman who used to cry herself to sleep because she knew my brother and I had a 50% chance of getting it) is getting near the end of her HD story and she doesnít even know I have it because she would feel responsible so I canít really ask any of themÖ Thanks again, you are all very brave and amazing people and this is a wonderful resource.
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Old 19-02-16, 09:45 AM   #2
toosh
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Join Date: Jun 2011
Location: North East
Posts: 570
Default Re: Looking for help/opinions

Quote:
Originally Posted by nobes02 View Post
HiÖ I am new to this site. I have never done the forum or group route beforeÖ I am Zach. I am 27 years old and have had HD in my life for 3 generations. I was tested at 18 and got a result of positiveÖ I am married and do have friends but itís hard to talk to them about the HD stuff since they donít really understand and there is nothing they can do to help it.. And I have a hard time lately finding the motivation to even make plans with them if they arenít the ones to initiate itÖ I feel like I have started to get a little apathetic toward things I really used to likeÖ but mainly I really really would like to vent for a minute and it has been really helpful reading some of the stuff others have posted. Please tell me if you think I am being crazy and if itís all in my headÖ If anyone else has had similar experiences I would really appreciate hearing about them.
I have noticed in the last couple years that my short term memory has started to get really bad, in my job I work with a lot of meetings and a lot of scheduling things. I used to be extremely good at this. I have always been extremely organized. I have noticed that in the past 6 months I am forgetting to add people to meeting requests and emails. I am scheduling them for the wrong days or times even though it is written right in front of me. I know to many this doesnít seem like to much but for me it feels huge. This was one of my greatest qualities and it feels like itís slipping. Like I am slipping. I will be leading a meeting which is half of my job and my brain will just blank out. I call it a brain reset, but basically in the middle of a sentence I will forget what I was saying or talking about.. and if someone doesnít remind me I usually wonít be able to remember. Itís the most annoying thing. It happens in regular conversation too but that I can generally handle.
I have also noticed increasingly over the past 3 years or so that I am getting mad at my significant other for stupid stupid stuff. I never notice in the moment, and sometimes it may be something that is a small insignificant thing, but I get so mad about it, like unrealistically mad and I just canít seem to let it go. A few days later I may look back and realize that it was uncalled for but there is nothing I can do about it. I apologize and he generally holds no grudges about it. He is pretty awesome like that.. But when I tell him I am afraid because I think it may be some of the early stuff from my HD he will always dismiss it as I probably had a stressful day at work or something else. I donít blame him for this because he has no idea what to do with it, but I have found it hard to talk to him about it now.. I should probably note that I have never been an angry person.. I have always disliked people who yell and get mad for stupid reasons but now I canít seem to help myself. And though I find myself worrying about this stuff more as it gets worse, especially the organizational/work stuff, I donít really feel like I can tell anyone at work. I donít know 100% that HD is causing this and even if I did it would feel like an excuse for those who donít know much about it.

Any Advice has anyone else had this kind of stuff? I would really appreciate itÖ I know I am only 27 but I am afraid to even bring it up with my doctor since itís all mental and reasonably could all be attributed to other stuff and other than slips and trips I donít have much for physicalÖ and everyone slips in ND.. itís very icyÖ My mom (a wonderful woman who used to cry herself to sleep because she knew my brother and I had a 50% chance of getting it) is getting near the end of her HD story and she doesnít even know I have it because she would feel responsible so I canít really ask any of themÖ Thanks again, you are all very brave and amazing people and this is a wonderful resource.
Hi Zach
Welcome

I don't have HD its my hubby who has it. CAG 42.
Short term memory loss is a symptom of HD but can also be attributed to stress etc.
You are very young to be showing symptoms. Could you be symptom hunting?
Here in the U.K you can have preliminary tests to ascertain whether you are showing symptoms including memory tests, cognitive tests snd physical stuff like touching your nose and walking putting one foot immefiately infront of the other to test balance etc.
Is this something you could consider undertaking in the U.S?
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Old 19-02-16, 01:14 PM   #3
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 331
Default Re: Looking for help/opinions

Quote:
Originally Posted by nobes02 View Post
HiÖ I am new to this site. I have never done the forum or group route beforeÖ I am Zach. I am 27 years old and have had HD in my life for 3 generations. I was tested at 18 and got a result of positiveÖ I am married and do have friends but itís hard to talk to them about the HD stuff since they donít really understand and there is nothing they can do to help it.. And I have a hard time lately finding the motivation to even make plans with them if they arenít the ones to initiate itÖ I feel like I have started to get a little apathetic toward things I really used to likeÖ but mainly I really really would like to vent for a minute and it has been really helpful reading some of the stuff others have posted. Please tell me if you think I am being crazy and if itís all in my headÖ If anyone else has had similar experiences I would really appreciate hearing about them.
I have noticed in the last couple years that my short term memory has started to get really bad, in my job I work with a lot of meetings and a lot of scheduling things. I used to be extremely good at this. I have always been extremely organized. I have noticed that in the past 6 months I am forgetting to add people to meeting requests and emails. I am scheduling them for the wrong days or times even though it is written right in front of me. I know to many this doesnít seem like to much but for me it feels huge. This was one of my greatest qualities and it feels like itís slipping. Like I am slipping. I will be leading a meeting which is half of my job and my brain will just blank out. I call it a brain reset, but basically in the middle of a sentence I will forget what I was saying or talking about.. and if someone doesnít remind me I usually wonít be able to remember. Itís the most annoying thing. It happens in regular conversation too but that I can generally handle.
I have also noticed increasingly over the past 3 years or so that I am getting mad at my significant other for stupid stupid stuff. I never notice in the moment, and sometimes it may be something that is a small insignificant thing, but I get so mad about it, like unrealistically mad and I just canít seem to let it go. A few days later I may look back and realize that it was uncalled for but there is nothing I can do about it. I apologize and he generally holds no grudges about it. He is pretty awesome like that.. But when I tell him I am afraid because I think it may be some of the early stuff from my HD he will always dismiss it as I probably had a stressful day at work or something else. I donít blame him for this because he has no idea what to do with it, but I have found it hard to talk to him about it now.. I should probably note that I have never been an angry person.. I have always disliked people who yell and get mad for stupid reasons but now I canít seem to help myself. And though I find myself worrying about this stuff more as it gets worse, especially the organizational/work stuff, I donít really feel like I can tell anyone at work. I donít know 100% that HD is causing this and even if I did it would feel like an excuse for those who donít know much about it.

Any Advice has anyone else had this kind of stuff? I would really appreciate itÖ I know I am only 27 but I am afraid to even bring it up with my doctor since itís all mental and reasonably could all be attributed to other stuff and other than slips and trips I donít have much for physicalÖ and everyone slips in ND.. itís very icyÖ My mom (a wonderful woman who used to cry herself to sleep because she knew my brother and I had a 50% chance of getting it) is getting near the end of her HD story and she doesnít even know I have it because she would feel responsible so I canít really ask any of themÖ Thanks again, you are all very brave and amazing people and this is a wonderful resource.
Same as |Toosh it's my hubbie with HD and with early stage symptoms . A visit your GP whether symptomatic or not can help with the anxiety and depression that goes along worth the worry of waiting for symptoms or having early symptoms they wil also keep an not of your symptoms . Until my hubbie had twitchy movements they did not / will not class it as HD .. up till that point he is HD positive but pre-symptomatic .Not sure how it works in the USA , do you see a neurologist at all have you seen anyone since your test , counselling / psychologists can also help

Good Luck
Gabby
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Old 19-02-16, 02:33 PM   #4
nobes02
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Join Date: Feb 2016
Posts: 8
Default Re: Looking for help/opinions

Thanks guys. Stress and what not was what i thought at first too, but since I am I was tested 9 years ago and am down to 1 job from 3 it is just wierd that it would happen during the least stressful part of my life in that time. Also the stuff at work just because i pride myself on it. I do have a neurologist. I have to drive 5 hours to get there though and take time off of work as they only do Wednesday and Thursday appointments. I would hate to go all the way there if it turns out to be nothing, however i do see your point that IF they can say one way or another it would be helpful. From what I have heard though, a lot of people with early HD having mental symptoms get told it doesn't count until there are physical symptoms, which is very frustrating as physical is only half the problem. With my mom, she was 35 when her physical stated, but her mental stuff started around 31.

Anyway thanks again for the input!
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Old 19-02-16, 05:52 PM   #5
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 331
Default Re: Looking for help/opinions

Quote:
Originally Posted by nobes02 View Post
Thanks guys. Stress and what not was what i thought at first too, but since I am I was tested 9 years ago and am down to 1 job from 3 it is just wierd that it would happen during the least stressful part of my life in that time. Also the stuff at work just because i pride myself on it. I do have a neurologist. I have to drive 5 hours to get there though and take time off of work as they only do Wednesday and Thursday appointments. I would hate to go all the way there if it turns out to be nothing, however i do see your point that IF they can say one way or another it would be helpful. From what I have heard though, a lot of people with early HD having mental symptoms get told it doesn't count until there are physical symptoms, which is very frustrating as physical is only half the problem. With my mom, she was 35 when her physical stated, but her mental stuff started around 31.

Anyway thanks again for the input!
As I said no HD diagnosis in UK unless physical symptoms which is frustrating so seems it is the same for you . Maybe try your GP first before travelling all the way to Neurologist xx
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Old 20-02-16, 01:59 AM   #6
shiraz
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Location: Merseyside
Posts: 873
Default Re: Looking for help/opinions

I'd go further than that Gabby...it's not just no confirmation of diagnosis until physical symptoms it is mis-diagnosis for years in the first place and not bothering to consider or listen to your concerns, coz our doctors ain't got a clue so you don't even get a diagnosis. My husband was "odd" with strange movements for years but hd was never ever muted/mentioned...obvious to me that something was amiss - though I didn't know what - but soo much easier for them to say he's depressed....alcoholic....ataxia....stroke....bad marriage....and of course end of the day it all came down to him saying "I'm fine".

Zach - be honest and upfront as you can and hopefully you will get help and assistance sooner rather than later. Work with your partner and not against. He's there, he loves you, rely on each other and listen
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Old 06-03-16, 08:33 PM   #7
Gabby
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Posts: 331
Default Re: Looking for help/opinions

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Originally Posted by shiraz View Post
I'd go further than that Gabby...it's not just no confirmation of diagnosis until physical symptoms it is mis-diagnosis for years in the first place and not bothering to consider or listen to your concerns, coz our doctors ain't got a clue so you don't even get a diagnosis. My husband was "odd" with strange movements for years but hd was never ever muted/mentioned...obvious to me that something was amiss - though I didn't know what - but soo much easier for them to say he's depressed....alcoholic....ataxia....stroke....bad marriage....and of course end of the day it all came down to him saying "I'm fine".

Zach - be honest and upfront as you can and hopefully you will get help and assistance sooner rather than later. Work with your partner and not against. He's there, he loves you, rely on each other and listen
Hi Shiraz & Zack, yes looking back my mother in law was not diagnosed until 2 years before her death at 52 as she had no family history available . I understand where you are coming from .
My husband was tested positive for HD 8 years ago was classed as pre-symptomatic until movements started.

Gabby x
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