Dad’s diagnosis

CQ:)

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My dad has issues with his memory which started 10 years ago and sees a neurologist in the city who specialises in rare brain diseases. After having special blood tests done they found he had a mild case of Huntington’s disease. As it is genetic it means it could’ve been passed onto his children eg myself or my Dad’s 2 boys.

I’m waiting to hear from someone from the genetics research team who works with my dad’s neurologist in regards to starting the process into getting tested. Before I can actually have the blood tests I have to see a genetics councillor who from my understanding will answer any questions I have and make sure I am aware what’s involved.

I told my neuropsychologist straight away as she always gives me great advice and makes sure I’m not jumping too far ahead of myself. I’m sort of glad we got the news now as I can tell the neurologist when i talk to him next month.

Even though it’s not a great outcome it’s also a relief for my parents because after 10 years they finally have answers 🤔
 

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CQ:)

What elae can get thrown at you, I am sorry to hear about your DAD but in a way I am glad for you. You need to look after yourself this time, I know you put family first but you are family as well so take it easy try not to worry a whole lot (which is easier to say than do) things will work out for you for the best. Be good and be careful.
 

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CQ:)

What elae can get thrown at you, I am sorry to hear about your DAD but in a way I am glad for you. You need to look after yourself this time, I know you put family first but you are family as well so take it easy try not to worry a whole lot (which is easier to say than do) things will work out for you for the best. Be good and be careful.
Thanks Liam
It probably doesn’t sound like it but I do think of myself more then I used to.
My old psychologist taught me to start putting myself 1st more, I help my parents if they need it as they do with me but mainly it’s just me and the birds lol.
As I know eventually it will just be me.

I actually want to get the tests done to find out if I have it or not so I can move on but there are steps involved so it will take time.

But for now the next step is seeing neurologist in couple of weeks and trying to get my bigger / more bizarre seizures under control 🤔
 

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CQ:)

To be honest with you, there is a first time for everything and you putting yourself first? Your psychologist is right start putting yourself first (y)
and forget about the birds lol for a minuet or two and relax.
 

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CQ:)

To be honest with you, there is a first time for everything and you putting yourself first? Your psychologist is right start putting yourself first (y)
and forget about the birds lol for a minuet or two and relax.
That was a few years ago she said that and I took it in hand. She gave me lots of handy tips. She was a little scary but a damn good psychologist.

When I said it’s just me and the birds I was being funny 😂. The birds are no trouble at all ,the quail lives in the garage so I check on her every night and put her out when I’m home. The parakette is in the living room, she’s entertaining 😂.

I have 4 days off so plenty of time to relax 😂.
 

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CQ:)

I understand that part do not worry ;) I think I prefer the quails to the parakeet funny enough and I am glad you get enjoyment out of the parakeet. Relax during the 4 days off and put your feet up. :)
 

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Hi CQ,
I'm sorry to hear about your Dad. Alzhemiers runs in my family and I'm starting to see how my dad is becoming forgetful.
Like Fedup said take it easy this weekend and try not to let this issue stress you out to much. I will be praying for your Dad
and you. Wishing you and your family only the best and May God Bless You!

Sue
 

CQ:)

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Hi CQ,
I'm sorry to hear about your Dad. Alzhemiers runs in my family and I'm starting to see how my dad is becoming forgetful.
Like Fedup said take it easy this weekend and try not to let this issue stress you out to much. I will be praying for your Dad
and you. Wishing you and your family only the best and May God Bless You!

Sue
Thankyou Sue
No stress but more relief for them that they finally have answers.

I am currently concentrating on my neurology appointment which is in 2 weeks.
 

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Today I received a phone call from the genetic councillor in regards to making an appointment which is the 1st stage into the testing. I see her on the 24th, she is coming up here from the city so I don’t have to travel to the city.

I have my Telehealth appt with neurologist on Monday so perfect timing so I can let him know when I talk to him.
 

CathyAnn31

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Hi CQ,

I'm so sorry to hear about your dad. Did one of his parents (your grandparents) have Huntington's? My grandmother and several of her sisters had this horrible disease. From what I understand, my dad had a 50% chance of having HD and since he didn't then the chance of me having it is 0. It doesn't skip generations.

He was 69 when he died from kidney disease and symptoms typically show way before then.
 

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Hi CQ,

I'm so sorry to hear about your dad. Did one of his parents (your grandparents) have Huntington's? My grandmother and several of her sisters had this horrible disease. From what I understand, my dad had a 50% chance of having HD and since he didn't then the chance of me having it is 0. It doesn't skip generations.

He was 69 when he died from kidney disease and symptoms typically show way before then.
My grandfather (dad's father) had parkinson disease and I believe so did his brother.

The genetics people have said there is 50% chance that my brothers and I have the gene. If neither of my brothers doesn't have it it stops so my brothers kids would be ok.

My Dad has a brother who has a heap of children /grandchildren so if he doesn't have the gene it stops on his side.

I see the councilor next week to start the process. Whether my brothers or my uncles side go through the process of get tested is up to them
 

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Hi CQ,

I wish you and your dad only the best with the genetic testing. I hope all goes well and your dad gets the best treatment.
Wishing you and your family only the best and May God Bless All of You!

Sue
 

CQ:)

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Hi CQ,

I wish you and your dad only the best with the genetic testing. I hope all goes well and your dad gets the best treatment.
Wishing you and your family only the best and May God Bless All of You!

Sue
Thanks Sue
From my understanding there is no treatment available for my Dad but he will continue to see his specialists.
As for his kids & brother it's up to us whether we choose to get tested. I've chosen to be tested but it's not as simple as a blood test. 1st stage is seeing the genetic councilor on Monday. I'll know more after I see her.


My neuro gave me a little info but both he and the neuropsych have said best tohave a good chat with the councilor. I believe that appt will help me decide if I go through further with the testing.
 

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I saw the genetics councillor yesterday, my best friend came with me as support. The councillor was fine with that as she said she always finds its better to have someone with you if you can.

So much information to take in but got a lot out of it 🤯.
There are a few more steps including a couple more sessions with the councillor before I can do the blood tests. I had the option of either doing an appointment by Skype or waiting until she was back up in my town in 3 months (May). I was happy to wait until May.
 

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I received a phone call from the genetics councillor the other day. I was due to see her again in May for a follow up appointment when she was back in my town.
But due to the Coronavirus she won’t be up and is now doing her appointments via teleconference so was just following up as to whether I was still interested in the 2nd appointment.

I was interested so we will be doing the appointment via teleconference, at the end of May. I now have to wait to hear from their office to get further information about the appointment and how to log in on the day.
 
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