Newbie


#1
Hi everyone, I am 35, mom of two young boys (4 and 1) just preparing to return to work next month after maternity leave. I have literally just been given the diagnosis of PD 2 days ago and am in a state of shock, a bit of an emotional wreck up and down trying to get my head around it and understand what it all means etc I would be grateful for advice on where to start to be honest there is so much to look at and take in not sure what is most important right now. I am waiting for an appointment to see parkinsons nurse, dat scan and gp to start on Meds straight away. Thanks

#2

Hi Chenna,

Unfortunately there are a lot of young people on this Forum, like you. I can't begin to understand how you must be feeling, being diagnosed at only 35yrs.

The most important thing is to try and be strong for your two boys and talk to people about your worries. The Helpline here is a good place to start and don't be afraid to ask questions on the Forum. Your boys need their Mummy and you need to keep yourself as healthy and well as possible. 

I'm sorry I'm not much help, as I'm an oldie, (67), with a son nearly your age. This is a cruel condition and my heart goes out to all the younger people who are afflicted. Others will reply with more useful information, I'm sure.

Take care,

Twinks.


#3

Aye aye chenna

dina worry you will be around to see your boys grow up its not good but it's. Not cancer okay so live each day as. It comes am sure you will be fine . Two boys phew hard work I know we had two boys as well . Anyway good luck and don't worry you will see them grow ,  keep posting stay happy  enjoy your kids they are a gift although there will be days they will drive you nuts!!!!  Take care. 

Ian 


#4

hi there chenna

                                          i was 36yrs when i got dx turn my life upside done worrying but as soon as i started my meds nothing really changed for 6yrs, then it was a different story my symptoms got very aggressive but some peoples pd remains for yrs with a normal life, keep fit & try to have less stress in your life.gus


#5
Hi so today my hands are not so.good have dropped my drink.4 times already and then my busicuits on the floor can't seem.to.get my hands to.comply with what my mind wants them.today does anyone else fell like this someday

#6

Hi Chenna, I know how your feeling I was diagnosed March just gone at the age of 35 also, 2 days before my birthday (what a present that was).

I think it's the uncertainty of it all that got on top of me as I now don't know what the future holds for me, I have had a lot of advice off various people from the forums and the one that sticks in my mind is *Focus on what you can do now and not before*.

Its been nearly 6 months for me now since I have been diagnosed and it isn't on my mind as much as it was when I was first told so it does get easier to accept with time.

What symptoms do you have? I haven't got a tremor but have gait issues and dystonia in my right hand in turn has caused my arm to become weaker, but the medication is helping with the dystonia.

Take care.

Trev.

 


#7
Hi Trev, I don't have a tremor either (well only when try and do certain things or if I get really stressed) I have lost a lot of the use in my right leg and particularly my right arm, I have slow movement and generally ridged which effects my walk (I have a bit of a shuffle) plus balance issues but the main thing is the fatigue and sleepiness (I am a bad sleeper). So pretty much a mess right now haha Hopefully the Meds will help once I start them next week. That is what is scaring me the most, the uncertainty, grateful it is not life threatening but it certainly appears to be life altering. Thanks for your reply and advice

#8

Hi Chenna,

I've only just joined the forum and you are my very first post - so thank you. I am 67 and was diagnosed Oct 2014. I can only imagine what it's like at your young age. Hope something of this helps - even if it's just a sentence. I was also in shock after a particularly unfeeling confirmation of diagnosis. (he had the empathy of a flea). I didn't know who to ask stuff, the parkinsons nurse went on maternity leave with no replacement. I didn't even know the questions to ask, let alone the answers. Slowly and unsurely i found there is a lot of info available out there but that if you go on the internet only look at 'recognised' sites. Best advice given was not to look at worse case scenario future, but to focus on me, now.

I decided to accept I'd need time to stop reeling and allowed myself to feel sad or confused, remaining aware that it wouldn't last but  was a period I needed to go through. I didn't fight it, I 'got through' it.. Then I started to find out what I could do, and learned that exercise has a big impact on symptoms so i joined a gym. Then I began to work on what I needed to be thinking to feel ok, that was very important to me; I choose my thoughts carefully and I think that they really matter. And I asked all my worried friends/family if we could not lose our sense of humour over it. I 'gave them permission' to make jokes or laugh at my frailties. And oh, we do! It's a work in progress, and the first year was hard, but I'm getting better at managing it. It's a massive adjustment - it's bound to take time. Finally, I'm quite pedantic, and I like good grammar and punctuation, so I deliberately don't give parkinsons a capital P or an apostrophe. That's my small protest, it doesn't deserve them! Wishing you the very best you can hope for, from B


#9

Hi!

Because my hand goes a bit shaky (not all the time) a musician friend said "let's start a band, with you on tambourine". Since then, if I am feeling tired, shaky or out of sorts, or dropping things(!) i say i am having a tambourine day. It doesn't sound so bad!

Regards, B


#10
Tambourine day...I like it haha Some really great tips guys and words of comfort knowing I am not alone and have a support network that fully understand what I am feeling. I too believe a sense of humour is key, laughter is the best medicine and all that. Thanks

#11

Hi Chenna. i am wishing you all the very best and i am sure you will deal with your parkinsons as ive heard on here you have parkinsons but parkinsons does not have you.I keep saying this to my self.I am 57 and was diagnosed just over 2 years ago.i am still working part time in an office.

 

I found it difficult to sleep at nights but once i was on the correct doze i am having a great sleep fingers crossed it continues.As if you have a good sleep you can cope with whatever the day brings.Especially when you have young children.

Hope you getting on okay with your meds. Keep smiling.!!!!! X


#12

Humour and laughter seems to help other people  (shop assistants etc) deal with us, the 'sick person' they have to interact with. When there's a checkout person who doesn't know me and they ask if i need help packing, i often say (with a smile) 'yes, if you want to leave on time tonight'. They usually laugh.

The young, very helpful gym trainer asked if i was ok on a day when I was struggling a bit. I said "I am a bit worried"  He put his best concerned face on and asked "what's the problem?"  I said "I find i am starting to like Justin Bieber".  He knows i normally change the gym tv screens to heavy drum and bass and rap music (the rhythm keeps me going on the treadmill) so he laughed out loud.

Last check up appointment with the neuro he asked the usual questions about meds side effects.             Him, "hallucinations?"  Me, "how would i know which of these people are real?" We both laughed together, but the nurse didn't crack a smile, I think she thought he was too important to laugh; it was a joke too far!


#13
Hi I'm so sorry to hear this I've not yet been dignosed with PD I have appt to see if it is PD I have a I have family member with it . So I'm not sure if I hae it.or not but my GP says I have some worrying new symptoms . If you don't mind me asking you how did you know somthing was wrong and what symproms did u have . Sending warm hugs to you x

#14

I had a shoulder injury (nothing to do with PD) and the physio treating me noticed i had a slight tremor in that hand. She sent me to the neurologist just to check it out. i had also found my walking was becoming a bit awkward with a slight drag in my left foot. I'd been a bit depressed which is unusual for me, but i thought that  was because my dog had died. He saw me in Feb 2014 and couldn't be sure; he saw me again in october 2014  and confirmed PD 

Wishing you Good luck


#15
Thank you for your reply . I do wish you all the best x