Terrified of early onset Parkinson's


#1

I'm 20 years old and my dad has recently been diagnosed with early onset Parkinson's. He's not even 45 yet and he's already struggling to move around, can't remember things that happened yesterday and is unable to really communicate properly. He's developed a sort of OCD behaviour and has been slowly suffering for about 2 years now. He recently moved and that lead to a new doctor actually diagnosing him whereas his old doctor sent him for dozens of tests and found nothing. He sees a social worker quite frequently, goes to a daycare center and has physiotherapy. I really can't fault the care he's been given since he's moved but he lives 2 hours away from me now and it's very difficult to go and see him because I'm not a confident driver yet.

I'm so worried that he's going to forget who I am. Soon. I'm aware that it'll happen eventually because he's also got some form of dementia. His father had Parkinson's and his sister has Alzheimers so it seems to be running through the family. I'm not close with his wife and he's unable to tell me what's going on so I'm kept pretty out of the loop with all the information and I'm just so worried. He's so young and I have Parkinson's in both sides of my family. My father and his father and then a cousin on my mum's side. I'm so worried that I'll get it too and with my dad being so young it makes me even more terrified.

I'm half the age he is now. Is my life half over? Should I really be thinking of having kids one day if I'm capable of passing it on? What about my dad? He's going downhill so fast and I just don't know what to do. Nobody else really understands I guess so I just wanted to let my emotions out somewhere that would understand. I can't help feeling selfish for being more worried about myself than my dad right now but I just need some security. It's so much to get your head around when you're still so young. 

Any help or assurance would be so appreciated. 


#2

Hi Emily

So sorry to hear about your dad but i can relate to your fears , i was diagnosed with Parkinsons in August this year aged 47 , after my neurologist diagnosed pd , i came away and thought about it and spoke to my mother who had the same symptoms has me , she went to see her doctor who told my mother she also had parkinsons , when i saw my neurologist in november i told him about my mother having Parkinsons and my maternal grandfather had dementia ,

  This is what my neurologist said to me

Of the genes that are associated with Parkinsons there are a handful of genes that are known to cause parkinsons if you have the mutation you will go onto to develop parkinsons at some point during your life  but he also stressed that there are a majority of genes that you can have the mutation and never go on to develop parkinsons and he also stressed that the environment is known to to have a big influence on pd 

my neurologist asked if i would be willing to go see a specialist with a view to genetic testing as i have children whose future i am concerned about , i will be tested first and if any mutations are found my brothers and my children will then be offered testing  i have a appointment to see the specialist in January

But i will stress that my neurologist did say it may be pure chance that both myself and my mother suffer with pd and it could be due to environmental factors

Given the history of parkinsons in both familys i am surprised your dads neurologist has not mentioned the possibilty of further testing

Having kids one day would be a entirely personal decision but from what i understand is there are types of genes you can have and never  develop parkinsons  and then there is a 50/50 chance of any children inheriting the faulty gene if they inherited it it does not mean they will get parkinsons

I hope this has helped a little as i say this is my own experience

good luck there is a lot of advice and support available on this site you are in the right place


#3

Emily

hope this helps

http://www.parkinsons.org.uk/sites/default/files/publications/download/english/fs86_inheritedparkinsonsgenetictesting_0.pdf


#4

A great deal of research is going on into inherited PD. I would be very surprised if gene modification, assuming you need it, isnt available within the next 25 years.   


#5

ps parkinsons dementia is quite different from AD - I may be wrong, but i doubt he will forget you. more likely to forget how the tv works or have benign hallucinations.


#6

Hello Emily

Your Dad probably misses you and would really appreciate hearing from you.  My OH is deaf so phone calls are no use but our daughter sends a post card, just a few lines, it`s always a nice surprise.  How about getting a picture or photo of yourself on your computer and then printing it on your postcard then he`d be sure to remember you.  Or you could print it small at the top of a letter.

Sorry that PD is in your family.  A scary situation for you.  Don`t be hard on yourself for worrying about your future, it`s natural.

Hatknitter


#7
Hi Emily I was diagnosed last year at age 33. I think that now your Dad has been diagnosed he can get help. The medication, although not perfect, does help. I understand the reason but try not to get dragged into the future. Parkinson's is unpredictable. You ask, "is my life half over?" Is my life over now I have Parkinson's? No absolutely not! If you believe it is or even if you don't, you should live every single moment as if it is your last. Live for now! The future is unwritten; start writing it now! You might like to read my blog www.dialoguewithdisability.blogspot.co.uk Take care Dr jonny

#8

yeah I know they're different but I'm completely unsure if he has dementia or AD. I know he has PD but he can't tell me what else he has because he doesn't really know and his wife refuses to tell me everything even though it's something I should really know. He's already forgetting people he doesn't see that often so I'm trying as best as I can to prepare that it could happen. 


#9

He does miss me. He says that he does all the time and always texts to ask when I'm coming to see him but being an inexperienced driver and working full time on minimum wage doesn't give me the chance to really go see him all that often. He has me on Facebook and he texts me every day as part of his little routine he has going but he can't speak on the phone. I'm not sure why he cant and I guess a lot of my fears are from being stuck in the unknown. It's something to do with him hearing the conversation and processing it and then coming up with a reply that I could understand but if you text him then you wouldn't know anything was wrong. It's so weird because he's always been this strong person and now he's totally different and that's the scary thing. It all just kind of hit me last night and I had to just try reach out somewhere so that I can start actually learning about all this instead of worrying so much.


#10

Thank you so much for your response. It was really insightful and helpful. I think a huge chunk of my fear is the fear of the unknown. I've known about the possibility of this being in my family but I never thought it'd be my dad who would develop it. He is one of six siblings and one of them has AD and possibly PD too but I'm not sure because we're not close but the other four are healthy as far as I know so I guess the odds may be in my favour but as an only child I worry. He and my mum divorced nearly 10 years ago now so I don't really have anybody to lean on who would understand. 

His neurologist tested numerous times for PD because his father had it but he couldn't get a clear diagnosis because he was displaying some symptoms but not any typical ones. However, my dad never told me much about his illness so for all I know he could have been diagnosed and had simply kept it from me and the family in a way of protecting us or simply not facing up to it himself. The only reason I know now is that it's too bad to hide and my family have told me what they'd heard because they speak to his wife whereas we don't get on so she refuses to tell me anything so with the distance it's increasingly hard for me to find out what's going on with him. 

I went to see him a few months ago and I'm going again after Christmas. He lived near me at the beginning of the year so it was the first time I'd seen him since he'd moved. I was so floored by how much he'd changed in such a short period of time. He has OCD behaviour, falls over sometimes, always checks the time, has a specific routine and is prone to throwing what could only be described as a temper tantrum but through all that he was excited to see me and give me my birthday present (along with telling me what it was and completely ruining my surprise! ha) so while everything is all so different there are things that are the same too. It's just a lot to get your head around. 

Your reply was really helpful and I'm already starting to see this as not the end of the world. Everybody is worried about him and myself included. I just had to try and find some support elsewhere because I don't want him to worry (he's such a worrywart!). Thank you again for your reply... and sorry for the big rant I sent back! This is just the first chance I've had to vent everything building up so it's been nice to get it out there. razz