Newly diagnosed and terrified!


#1

I'm 38 and I've just been diagnosed following an appointment with a neurologist and a dat scan. After being told by numerous doctors I had a repetitive strain injury for the last two and a half years the diagnosis came as a total shock.

I have to keep it together as I have a 5 year son but I've struggled to keep the tears in the last few days! I wonder if I'll ever meet anyone again? how long will I be able to work for? Can I support my son and give him the life he deserves in the future? The thought of losing my driving licence scares the hell out of me! I'm part way through a degree which I thought would bring me the career of my dreams but that needs rethinking now too.

I've become an expert at putting on a brave face but it's getting harder each day. My family and friends tell me it will all be ok but how can it ever be? I know I need to try and be positive but I feel like all my hopes and dreams have been cruelly snatched from me. I'm determined to come out of this depressive stage but it's going to take time. Does anybody have any tips for coping? Any help at all would be appreciated. 

Claire x


#2

 

Hi Claire


It is daunting a shock and scary at first , One thing we do have is plenty of 'time' although some thing's can take 'time' they can be sorted even if they seem to take a fair bit of 'time' too sort out, Hopefully you should of been given some info at diagnosis even if after those words the world seems a total blur.

DVLA involves some form filling back n forth so contact them, while that is going on you should be able to continue to drive until a decision is reached, most get a 3 yr short period licence and your insurance shouldn't go up but you'll need to inform them.


Work is down to your personal circumstances, some carry on some struggle and some stop, you can claim esa or pip or both, or you can claim pip if your in work or not, it may also extend to your education ?. it would prob be best too find your local parkinsons advisor and make an appointment with them to explain all your options on work,education & benefits found here. http://www.parkinsons.org.uk/local-support

There are support groups nation wide some catering for working age people i'm 46 and one was recently formed in my area with around 30 members and some around the net 'young parkinson's network' springs to mind. 

it may also be beneficial for you to get reff to your local parkinsons nurse by your neuro if you haven't already been so.

Any questions fire away


#3

Hi Claire, 

Welcome to the community, we're here to support you and you don't need to put a brave face on for any of us here. 

Receiving a diagnosis is an emotional experience, I'm really sorry to hear that you're feeling so low. Have you been referred to a Parkinson's specialist or nurse yet? A good place to start on our website is hereYou can find information about Parkinson's, treatments and therapies and what support is available for you. 

Please also feel free to call our Helpline if you need to on 0808 800 0303. It's open from: Monday-Friday: 9am-7pm and Saturday: 10am-2pm. 

Take care

Kat


#4

Thank you so much for the advice. It's good to know there are others who understand Exactly how I feel. Hopefully as I start accepting my diagnosis things will feel less overwhelming. I haven't been referred to a Parkinson's nurse yet so that's something to look into.

 

thank you again. I may be back with more questions!! x 


#5

Hi Claire,

I guess the most helpful thing I could say to you is that you are not alone.  You are in a particularly special group being diagnosed so young (I was diagnosed 2yrs ago when 41), and I would encourage you to make contact with other people in similar situations.  I can you give you links for various online supportive groups if you'd like, some UK based.

One of the questions you may encounter is around how much information to get hold of in the early stages of diagnosis.  I kind of overloaded myself with everything to start off with, particularly when making decisions related to starting any medications, but I think it did help me make what I still think was the right decision. Definitely touch base with your local Parkinsons' Nurse, they are a rich source of help, advice and information and can help you adjust to how life might be different for you.

You will quickly find out that people live with Parkinson's in very different ways, and although it sounds much too easy to say (or write), do whatever you can to stay positive.  But at the same time be realistic and acknowledge that there will be times, hopefully not many. when you can't help but ask "why me?".

Any questions - ask away

Take care

Nick

 

 


#6

Hi Claire 

dont mean to sound harsh but worry is not going to change anything it will just make things worse .you must learn to master your PD and bring your son up with a contended mam that's your main role good luck 

( if your happy your.son will be happy)

ian x


#7

Thank you Nick.

i guess it still feels a bit like a bad dream! I've found out that there is a group local to me that meets monthly so I'll try my best to attend. If you have any other contacts you think might be useful I'd be grateful.

Next appointment with my neurologist next week. I have a LOT of questions for him!

Hopefully everybody on here will continue to amaze and inspire me and life can be good again.

Claire x

 

 


#8

Thanks Ian. I keep telling myself the same thing. I think I need a bit of time feeling sorry for myself, use up all my tears and then I'll be up for fighting this cruel disease. It could be worse after all...

 

claire x


#9

Hi Claire,

 

I've made contact with a UK group of young Parkinson's sufferers who connect with each other mostly online via a Google group or Twitter etc.  We've even had a number of video Google hangouts where we can virtually meet to discuss how we are all getting  on.  They really are a great and helpful bunch.  Ages tend to vary from 20s to early 50s.  Have a look at he website  and see what you think, it really is helpful to connect with others in the similar situation.

https://youngparkinsonsnetwork.com/

Nick

 


#10

Hi Claire 

Please speak to your student support team at uni. They should be able to come up with ideas for you to finish your degree. 

The one thing I've always regretted was putting my degree on hold half way through until I felt a bit better, because it has taken years to get the diagnosis and I have got to the stage where I don't think I could even cope with finishing with open university. I transferred my points to them hoping that was the way forward.

tdon' panic and don't give up.

 

 

Porthos


#11

Thanks for the link Nick, I've had a look. Good to see lots of people dealing with Parkinson's in a positive way. Gives me hope and something to aim for. 

claire


#12

Hi  Porthos,

I've contacted Student Support today via email. I've worked so hard so far I'd hate to give up but there's another part of me thinking what's the point now? Hopefully, I'll get some useful guidance on my options. 

claire


#13

Hi Claire

I have been away from the forum for the past few days so not seen your post until now.


I never felt terrified and scared of the future when i was diagnosed, strangely enough. I had an automatic acceptance of the condition and i don't know why. I was older than you being 45 at the time and my children weren't children any longer, late teens and early twenties. The fact that you have a young son who needs mummy happy , well and smiling all of the time is most likely something you show him daily so don't really have time to think privately and rationally about this disease you have. You are young but it doesn't mean the end of what you enjoy in life. If i were to give any advice i would say, carry on as you would have done prior to diagnosis, don't put anything on hold just do it!  This thing we have doesnt have to stop any of the enjoyment and activities life has to offer. Your progression maybe slow so not noticeable to your son and as for driving just keep applying every 3 yrs. As long as you are safe to drive in the opinion of your consultant then you are fine. .


Nick was saying that he was overloaded with information at first. I wasn't!  My choice to know very little about PD until i have to. With ignoring the condition i can get on with the things that make me happy which in turn does the condition good. There is no rush to learn about PD unless you really want to. There are a lot of us in this Parkinsons boat so i hope that is some comfort to you! also knowing that we haven't stopped being who we are. Since diagnosis i have completed the Tough Mudder course last year, ran two 10k runs and a charity 107km bike ride through london at night, plus i am still driving 6 yrs on. You are capable of so much still.


Good luck and try not to be frightened

Rachel x


#14

Hi Rachel,

Thank you for your positive words. It made be feel like there is hope and I can still achieve new goals. I guess I'm lucky in many ways and I have my son to motivate me and stop me getting too depressed!

I'm seeing my neurologist again today so hopefully he'll answer a lot of my questions and I can start looking forward again.

If I can complete a 10k run in the future I'll be a happy woman!!  Thanks for the inspiration! 

 

Claire x


#15

Hi Claire, 

I hope it goes well with the neurologist today, we'll all be thinking of you. Let us know how it goes and if there is anything we can do to help you.

Kat


#16

Hi Claire

I was diagnosed in my early 40s at which time my children were still at primary school. 15 years later I am still going strong.  To the untrained eye, no-one would know I have PD.  I m at my worst in the morning before my meds kick in, but once they do I am able to cope

Dont despair - there is life after diagnosis and a positive attitude and the will to beat this disease will really help.  It is dreadful to have to come to terms with dealing with the future, but there is plenty of help out there and progress can often be slow when you are diagnosed when still young.


Try to remain positive and keep fighting - we are all out here to support each other.