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BigGibbo

How Was Your Day?

By BigGibbo, in General Chat

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ramboacdc

ramboacdc

Posted
Posted

Thanks but unfortunately no medicine or procedure can cure his condition but the groups that are available for him to go to in order to teach him the motor skills necessary are brilliant and the private physio we have is an absolute gem. She really has transformed him over the past 2 months.  

 

All I know is he's my little boy and I will do everything I can to give him the best life possible. He certainly deserves it

this bought tears to my eyes.

 

anyway i had a nervous breakdown at work yesterday and fear i may lose my job today. my social anxiety has reached a peak and i cannot stop it now. since i have monday off to watch the superbowl, i should be able to get in to see my usual doctor who refuses to give me diazepam (which i took last night and it didnt work so this should be fun!)

 

need to vent somewhere and doing an askreddit got 4 replies! 

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Haydos

Haydos

Posted
Posted

this bought tears to my eyes.

 

anyway i had a nervous breakdown at work yesterday and fear i may lose my job today. my social anxiety has reached a peak and i cannot stop it now. since i have monday off to watch the superbowl, i should be able to get in to see my usual doctor who refuses to give me diazepam (which i took last night and it didnt work so this should be fun!)

 

need to vent somewhere and doing an askreddit got 4 replies! 

 

Have you asked your doctor about speaking to a therapist/someone more qualified? I know my GP was worse than useless when I went in to speak to her about depression and anxiety. I was on prednisolone (steroid) for a condition I'd recently been diagnosed with and I was really suffering, I just felt empty, never wanted to be around people or leave the house, talking to people felt very stressful and it took me long enough to build up to see the GP about it and she effectively blew me off.

 

I've never really found any medical professional to talk to about it and eventually came off the medication and things settled back down but I had a really close friend (now girlfriend) that got me through it. Having someone to talk to can really help with it so I'd recommend trying to find someone to vent to. Does your work have a HR department? They might deal with stuff like that if it's a big company. If not, I'd urge you to press your GP or even ask to speak to a different GP.

 

PM me if you like, I've dealt with similar sounding stuff and I know it's horrible.

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kingcarr21

kingcarr21

Posted
Posted

Big day I guess, I've got two interviews today.

Good Luck.

 

Tonight i'm taking the kids to 360 (special rate for kids with learning difficulties 1st Friday of every month, if you know anyone with kids that have a disability let them know)

 

Then im off out up town for my mates 30th. I don't normally go up town but when I do I have a great time so should be a laugh.

 

Any idea where is good to watch the game tomorrow with the kids?

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Alf Bentley

Alf Bentley

Posted
Posted

Well the appointment with the genetics department yesterday went well (I think).

 

My son does have Chromosome 12p duplication syndrome. In simple terms his strand of chromosome 12 has a small duplication on one of the small arms (so 2 of the same piece). In terms of size its very small (in numbers we are talking 1 million in a body of 3 billion 300 million) The doctor believes that it should have no impact on his life. The problem they have though is in the NHS database there is no other case of this duplication to compare it to. Therefore my son is the only one diagnosed with the condition. (It maybe that hundreds of people have the same duplication but cause they've led normal lives they have never needed to be tested)

 

He didn't inherit it from either me or my wife and it is a new event. ( I was hoping I did have it then we wouldn't have anything to worry about knowing I have led a normal life)

 

The doctor cant possibly confirm whether it wont have any effect on him but its highly unlikely. They will do further tests as Ashton grows up so they can log any changes into the database for future use when the next person is diagnosed with it. The genetic condition and my sons brain condition are highly unlikely to be related as by looking at the genes inside the duplication they are perfectly normal. (When someone has a genetic condition the genes inside can tell a doctor what specific condition they will develop, as Ashton's genes are normal they are confident it will have no effect on him and his ACC is a separate issue.)

 

So all in all it was good news. What is a little annoying is the unknown. We don't know what it means for his future but most likely its nothing. The doctor did say that if we decided to have more children its highly unlikely they will develop the same genetic condition (its happened once so they cant say its impossible but it practically is. Ashton was just unlucky).

 

Although if Ashton was to have kids of his own they would have a 50/50 chance of getting it but if it doesn't affect him then its nothing to worry about.

 

So that's where we are at the moment. For the time being the genetic condition can be on the back burner and now we can concentrate on helping him overcome his ACC and help him get back on track with his motor skills. I knew my son was one in a million but now the doctor has confirmed that he actually is.

 

I joked to the wife that you never know his extra chromosome might mean he gains super powers. X men style. Just hope its Wolverine lol

 

 

Your commitment and positivity are very impressive, mate. All the very best to you, your wife and Ashton. I suppose these things come along and we just adjust and get on, dealing with them.

 

Look after yourself in all this, though, won't you? It's easy to concentrate on helping someone else for a long time, then find that it all builds up on you and you have some sort of explosion. I'm speaking from experience, remembering 17 years ago, when my partner (now wife) had a life-threatening accident that took her months to recover from...once she did, I went a bit haywire for a bit. Make sure you build in some sort of release for yourself - a few nights out on the beer, trips away on your own to see friends, watch City, whatever, you'll know best.

 

Funny how we end up with selective medical expertise due to family issues, though, isn't it? I'm now an expert on Parkinson's disease, dementia with Lewy bodies, hypertrophic cardiomyopathy and heart arrhythmias!  :D

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Alf Bentley

Alf Bentley

Posted
Posted (edited)

Unpredictable but probably mainly shitty day ahead, today.

 

Down to London now to see my ailing Dad for the day. Have also got to tell him about the death of one of his favourite nieces (77 and had been in a nursing home for 7 years, but a major figure in his life).

May or may not end up handling a visit from his GP or community matron due to various new problems - night-time delusions, causing him to get out of bed and have falls etc.

He seems to be sleeping most of the day, but only half the night, and progressively getting more confused - but only some of the time; sometimes he's quite on the ball, sharp and articulate as he used to be.

 

Ah, well! One day, then weekend and City on TV (must psych myself into expecting a defeat, so as not to be disappointed if we do lose).

Edited by Alf Bentley
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kingcarr21

kingcarr21

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Your commitment and positivity are very impressive, mate. All the very best to you, your wife and Ashton. I suppose these things come along and we just adjust and get on, dealing with them.

 

Look after yourself in all this, though, won't you? It's easy to concentrate on helping someone else for a long time, then find that it all builds up on you and you have some sort of explosion. I'm speaking from experience, remembering 17 years ago, when my partner (now wife) had a life-threatening accident that took her months to recover from...once she did, I went a bit haywire for a bit. Make sure you build in some sort of release for yourself - a few nights out on the beer, trips away on your own to see friends, watch City, whatever, you'll know best.

 

Funny how we end up with selective medical expertise due to family issues, though, isn't it? I'm now an expert on Parkinson's disease, dementia with Lewy bodies, hypertrophic cardiomyopathy and heart arrhythmias!  :D

Thanks Alf but the wife deserves all the praise. She is the one who is always busy now with appointments here there and everywhere in between going to work. I make sure she finds the time to go out and do things she likes. She is out on Saturday night with her friends and she can relax in bed on Sunday. Like you said you just get on with it and adjust your life the best way you can. Luckily Ashton is a very happy boy and easy to look after its just hectic at the moment where everyday its either people coming round or Ashton going somewhere.

 

We are trying to claim DLA benefit so my wife can cut her hours down. We get the low band but the professionals tell us we should be on the middle band. That's going through an appeal process. If we get it then my wife can half her working hours which will help massively.

 

I work the normal Mon-Fri so I miss most of his appointments and I have a season ticket so I have it easy in comparison. We have Butlins on 15th Feb, Devon end of May and im taking my wife New York for her 30th in November so we have some nice get aways coming up where my wife can relax.

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Finnaldo

Finnaldo

Posted
Posted (edited)

Thanks Alf but the wife deserves all the praise. She is the one who is always busy now with appointments here there and everywhere in between going to work. I make sure she finds the time to go out and do things she likes. She is out on Saturday night with her friends and she can relax in bed on Sunday. Like you said you just get on with it and adjust your life the best way you can. Luckily Ashton is a very happy boy and easy to look after its just hectic at the moment where everyday its either people coming round or Ashton going somewhere.

 

We are trying to claim DLA benefit so my wife can cut her hours down. We get the low band but the professionals tell us we should be on the middle band. That's going through an appeal process. If we get it then my wife can half her working hours which will help massively.

 

I work the normal Mon-Fri so I miss most of his appointments and I have a season ticket so I have it easy in comparison. We have Butlins on 15th Feb, Devon end of May and im taking my wife New York for her 30th in November so we have some nice get aways coming up where my wife can relax.

 

Sounds like you're both doing a fantastic job mate, all the appointments and muscle therapy sessions you have to pencil-in on your schedules sounds like something that could whittle a lot of people down, especially a family unit, but as Alf said your positivity is admirable and no wonder you son's making such fantastic progress  :D  Hope you enjoy your Butlins break! 

 

As for my day, another day working, fairly light workload however today. fairly busy schedule over the weekend that I'm looking forward to, signed up for gym last Friday and haven't gone this week yet so looking forward to a couple sessions this weekend.

Edited by Finnaldo
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kingcarr21

kingcarr21

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Posted

Sounds like you're both doing a fantastic job mate, all the appointments and muscle therapy sessions you have to pencil-in on your schedules sounds like something that could whittle a lot of people down, especially a family unit, but as Alf said your positivity is admirable and no wonder you son's making such fantastic progress  :D  Hope you enjoy your Butlins break! 

 

As for my day, another day working, fairly light workload however today. fairly busy schedule over the weekend that I'm looking forward to, signed up for gym last Friday and haven't gone this week yet so looking forward to a couple sessions this weekend.

thanks that means a lot. It can get hectic but we manage. Luckily our daughter is 9 years old so she is old enough to understand that he needs extra attention. She loves him to absolute bits. I was worried she might resent him but its quite the opposite. Not only do I have a wonderful son but a caring daughter. Cant believe how lucky I am.

 

I started back at the gym 2 weeks ago. I need to lose weight in order to do my skydive. 2 weeks in and ive lost 3lb and enjoying working out and watching what I eat.

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Finnaldo

Finnaldo

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Posted

thanks that means a lot. It can get hectic but we manage. Luckily our daughter is 9 years old so she is old enough to understand that he needs extra attention. She loves him to absolute bits. I was worried she might resent him but its quite the opposite. Not only do I have a wonderful son but a caring daughter. Cant believe how lucky I am.

 

I started back at the gym 2 weeks ago. I need to lose weight in order to do my skydive. 2 weeks in and ive lost 3lb and enjoying working out and watching what I eat.

 

It's amazing how quick you can get into it. Last went a year ago for a few weeks and a month ago I loathed the idea of going on a full-on gym session, but the new one in Hinckley was a tenner to sign on in January, £20 a month as I'm an apprentice and open 24 hours so I can go Sundays when some are shut. First couple of sessions and I can't wait to go again, ached like hell at the start of the week but felt a lot better as a result. Mate's an ex-rugby player and his cousin trains one of the Tigers youth teams so I've got a decent starting point and know where to focus. just wished I started earlier in January!  

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Fox92

Fox92

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Posted

Best of luck. What kind of job are you looking for?

 

Well I'm a web developer so anything around there is what I go for. Second interview today was for a web development role where as the first interview today was more of a web admin role.

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