Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > General HD topics

General HD topics Open forum for all other issues concerning Huntington’s disease

Reply
 
Thread Tools Display Modes
Old 09-05-16, 09:33 AM   #1
dmftp
Approved Member
 
Join Date: May 2013
Posts: 35
Default Annual check up

So....the year has flown by and it's time for my wife's annual check up tomorrow.
This will be the first time that we haven't taken the three children. this now gives me the opportunity to go in to the room with my wife while she has her check up. I have noticed changes in her. Memory, inhibitions changing, mood swings, anger. repetitive actions and speech. She'll tell the children it's bedtime from about 6.00 pm on wards. the kids get really grumpy being constantly reminded because they know it's not bedtime yet. She told me that she says it to remind herself.

So the question is... How much do i say in this appointment? I know this is happening now. I know she's changing. She say there's nothing wrong and she doesn't even need to think about it all. From everything i read on here that all seems pretty standard. If there's nothing the doctor can do for the things that are happening is there any point me saying anything at all?

I'm afraid to say anything in case she suddenly admits it then it all spirals downwards rapidly.

Am i better off just not saying anything and picking up the pieces?

A sleepless night ahead i think......
dmftp is offline   Reply With Quote
Old 09-05-16, 01:54 PM   #2
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,110
Default Re: Annual check up

.
My response might be too late for tomorrow’s appointment but thinking ahead as we all have to ……

I have taken some of your comments apart so that I can explain how I work my non-hd [caring\psychology] situation with my hd-son.

I have noticed changes in her. Memory, inhibitions changing, mood swings, anger, repetitive actions and speech.

Create a written list for the neurologist of all current symptoms, events, strange happenings, extremes in mood, behaviour, etc. Also, read up on the symptoms so that you can both find a way of dealing with them.

She'll tell the children it's bedtime from about 6.00 pm onwards. the kids get really grumpy being constantly reminded because they know it's not bedtime yet. She told me that she says it to remind herself.

My son creates a routine by set times: his meals; his sleep times; his brilliant reduction in smoking, down from 40+ a day to one an hour on the hour. So it can, in other situations, be a positive action.

So the question is... How much do i say in this appointment? I know this is happening now. I know she's changing. She say there's nothing wrong and she doesn't even need to think about it all.

Every individual has an opinion, a view of a situation and, in the HD situation, one is the viewer and one is the viewed; observer and observed. That most probably means that there will be different responses. It has taken us a long time and my son used to storm out of appointments – but we now agree to disagree and we sometimes have a laugh about our different views of the world too. I have had to work at this for a long time and he will now sit and listen when I speak at appointments and then if he disagrees he will say so – but at least I have got my thoughts heard by the Neurologist.

If there's nothing the doctor can do for the things that are happening is there any point me saying anything at all?

Yes! Yes! Yes! Many “experts” are only aware of the clinical side of HD. They don’t live with you or have cameras hidden in every room. So it is up to you to express your thoughts and views – so that your wife can then agree or disagree. Even if she disagrees, the Neurologist will get the gist of what is actually happening in your lives.

I'm afraid to say anything in case she suddenly admits it then it all spirals downwards rapidly.

All of my responses above are for you – to get it off your chest, to let it all out. You and your children have to have the space to live your own lives so that no one gets dragged down by the beast that is HD. The more you know – the better you can care.

I hope the day goes well for you both.

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
Old 09-05-16, 03:48 PM   #3
Gabby
Approved Member
 
Join Date: Jan 2015
Location: Berkshire
Posts: 339
Default Re: Annual check up

Allan has given you lots of useful advice,
I just want to add most of the symptoms will be noticed if she is doing the cognitive tests they do for Track Hd . Memory etc they will scale her and see from last appointment any changes . I sometimes email the nurse with things that are worrying me , and then I don't have to say them in front of my husband .

Good luck for tomorrow please let us know how you get on

take care
Gabby
Gabby is offline   Reply With Quote
Old 09-05-16, 04:11 PM   #4
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 879
Default Re: Annual check up

Alls I can really add is that depending on what frame of mind your wife is in her hostility to what you say and her acceptance of it will depend on how willing she is to accept the changes you can see. My husband used to get extremely angry and agitated and become very verbally abusive/enraged with me once back home saying I'd reported him to the authorities and was trying to get rid of him and he'd stay like that for days and days adamant that it was me who had a problem - and that, behind closed doors, is when you have to deal with what you have dared to say. However, things have moved on and he now will admit how he is to specialists we see and allow me, even welcome, me bringing things up. In essence I guess I'm saying....only you know how far you can push things tomorrow for your own peace back home. Good luck.
shiraz is offline   Reply With Quote
Old 09-05-16, 04:25 PM   #5
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,110
Default Re: Annual check up

.
Just as a quick follow up to my post above, have a look at this: Unified Huntington’s Disease Rating Scale (UHDRS)

My son was put through his paces with these, mainly movement related, tests prior to his diagnosis - and still has to do some of them when he visits his Neurologist. His favourite one is this:

Retropulsion - it's the slight push that puts him off-balance. We have all used something similar as an exercise in trust.

0-normal
1-recovers spontaneously
2-would fall if not caught
3-falls spontaneously
4-cannot stand


.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
Old 11-05-16, 02:06 PM   #6
dmftp
Approved Member
 
Join Date: May 2013
Posts: 35
Default Re: Annual check up

So... ten minutes before the appointment my wife tells me she doesn't want me in the appointment. She said it would make her too self conscious while she was trying to do the tests. Although i was surprised and upset i obviously respect her wishes and privacy so waited outside. I said that i did want to be in there at some point so that i could be involved and didn't want to be effectively 'shut out'. She carried out the first set of tests then went off with the nurse for another set. This basically gave me am opportunity to have a one 2 one with the doctor.

He said that he had noticed a difference in her personality since last year.

I told him about all the changes i had noticed in my wife. At first he was generally quite defensive. "oh that could be down to having a busy life" , 'that could be having three children". There were things that are quite clearly not 'normal' behaviour or things you could find reasons for. He then started to listen properly.

He basically confirmed my thoughts that although there was no way to prove it he agreed that these actions were probably down to the early signs of H.D. He said in a box ticking type exercise the results from yesterday would not indicate signs but he thinks in the next two years he would probably having a difference chat with me.

He decided that based on my discussions ( or complete mental breakdown in front of him), he wouldn't leave it a year before she won;d have her next check up. He would find an excuse, research etc, to invite her back before Christmas.
He went on to say that there wasn't any form of drug he could issue for what was going at the moment so we agreed that having a separate discussion with my wife would effectively put the cat amongst the pigeons.

A sense of relief.

Although it felt as if i as betraying her slightly by doing all this behind her back i also felt like it had to be done.

My wife came away happy and positive which for me at the moment is the main thing. The whole day was yet another massive reminder about this dark cloud that blows over every time the sun starts to come out.

This a very special, tiring club to belong to. Once you're in, it's a lifelong membership whether you like it or not.
dmftp is offline   Reply With Quote
Old 11-05-16, 04:11 PM   #7
Gabby
Approved Member
 
Join Date: Jan 2015
Location: Berkshire
Posts: 339
Default Re: Annual check up

Quote:
Originally Posted by dmftp View Post
So... ten minutes before the appointment my wife tells me she doesn't want me in the appointment. She said it would make her too self conscious while she was trying to do the tests. Although i was surprised and upset i obviously respect her wishes and privacy so waited outside. I said that i did want to be in there at some point so that i could be involved and didn't want to be effectively 'shut out'. She carried out the first set of tests then went off with the nurse for another set. This basically gave me am opportunity to have a one 2 one with the doctor.

He said that he had noticed a difference in her personality since last year.

I told him about all the changes i had noticed in my wife. At first he was generally quite defensive. "oh that could be down to having a busy life" , 'that could be having three children". There were things that are quite clearly not 'normal' behaviour or things you could find reasons for. He then started to listen properly.

He basically confirmed my thoughts that although there was no way to prove it he agreed that these actions were probably down to the early signs of H.D. He said in a box ticking type exercise the results from yesterday would not indicate signs but he thinks in the next two years he would probably having a difference chat with me.

He decided that based on my discussions ( or complete mental breakdown in front of him), he wouldn't leave it a year before she won;d have her next check up. He would find an excuse, research etc, to invite her back before Christmas.
He went on to say that there wasn't any form of drug he could issue for what was going at the moment so we agreed that having a separate discussion with my wife would effectively put the cat amongst the pigeons.

A sense of relief.

Although it felt as if i as betraying her slightly by doing all this behind her back i also felt like it had to be done.

My wife came away happy and positive which for me at the moment is the main thing. The whole day was yet another massive reminder about this dark cloud that blows over every time the sun starts to come out.

This a very special, tiring club to belong to. Once you're in, it's a lifelong membership whether you like it or not.
glad you got to speak to consultant and yes so true about this club only consolation is all its lovely members
take care
Gabby
Gabby is offline   Reply With Quote
Old 11-05-16, 06:02 PM   #8
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,110
Default Re: Annual check up

.
Well, that's positive for both of you, dmftp. For you, "the sense of relief" and for your wife, "coming away happy and positive". Seems that things worked out just right and you were able to get your message across.

Your final comment is so true: This a very special, tiring club to belong to. ...... but we've got to keep on keeping on.

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
Old 11-05-16, 07:37 PM   #9
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 879
Default Re: Annual check up

Well...all in all the appointment went well - your wife came away happy, you got to speak up AND be listened to, and will be called back before the end of the year. I understand you saying you feel as though you have gone behind your wife's back but, hd does not just affect her, it affects the whole family. And you are best placed to see changes in her, because it is not just the physical symptoms of the disease it is the mental health and behaviour issues that greatly impact on your home life. Though there may well be many dark clouds, spoiling the sunny days....after the rain, watch out for and treasure those rainbows.
shiraz is offline   Reply With Quote
Old 17-06-16, 04:31 PM   #10
dmftp
Approved Member
 
Join Date: May 2013
Posts: 35
Default Re: Annual check up

So........what seemed like a positive hospital experience has very quickly turned on it's head.

My wife got a letter from the hospital where the doctor hasn't exactly kept our 'private' conversation very quiet at all.

I'm tired.

There's simply no light at the end of the tunnel when H.D is in your life is there. I can't remember the last time i laughed. Or even felt relaxed.
dmftp is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 08:49 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA