Too Scared to Function


#1
Just to give people an idea of the situation, my mum was diagnosed 10 years ago at the age of 40, I don't remember a time when she didn't have PD. If I go by the rating system I would probably put her in between 2 and 3. I don't sleep sometimes for days on end because I'm so worried about the future and frustrated that I can't help her. I live with her because I'm young and when she asks why I'm so tired, what's kept me up worrying now, etc I always just say school or some other personal problem. We don't speak about Parkinson's and I'm glad because every time I think about how miserable we'll all end up being I break down on the spot. I have depression and anxiety disorder, not medicated, so that makes the thoughts even more profound. I don't think I could bear seeing her condition deteriorate a lot. I don't know what to do so I'm looking for someone more experienced than me to give some insight.

#2


Hi there, I really feel for you and you must feel like you have the world on your shoulders.  Talking openly can oftentimes be the best medicine and hopefully at some stage, you will feel ready and able to broach the subject with your Mum. You could both be feeling the same, afraid to bring the subject to the surface. 

You know, the fact you're frustrated that you can't help her could be turned around when you feel able to talk to her because just being able to discuss things with you might be a massive help to your Mum.

My dear, we can none of us control what is to come ahead in the future so many of us have learnt to not worry about it. Easy for me to say I know, as I've already conditioned myself to think this way but it's amazing when we just concentrate on getting through THIS day and not worrying about things to come. 

You're incredibly brave to come on here and share with us.  Use this as an outlet until you feel able to talk to your Mum about it. 

Joanie

 


#3

 

Hi Lil Poundcake - If your mum has a parkinsons nurse perhaps she will talk to you about PD, your GP should be able to put you in contact with her or a parkinsons advisor. Don't worry by yourself it is'nt good for you and it's starting to show, please seek help. Take your mum with you, your GP is the first port of call in my opinion to seek help from someone who can handle the situation. I felt like you in the early stages of my PD, my neurologist made arrangements along with my GP to have therapy sessions by a group therapist from 'Lets Talk' which was very helpful.

I wish you all the best, please take care - Sheila


#4
Hi Lilpoundcake, Your post has struck a cord with me. I have 3 teenage sons and I try to keep the conversation open about my parkinsons. I know I don't know all their thoughts but I would be devastated to think they had sleepless nights over me. I'm sure your mum is the same. Like the other posts say. Please start a conversation with your mum and it will take such a load off your shoulders. Again keep posting on the forum as writing it down is good. Also is there a teacher at school that you could speak to?

#5

Hi Lilpoundcake

This is my first post - so bear with me please!! I really feel for you, the worry on your shoulders must weigh so heavily. Can't deny it's so hard to know what's best, there is no right or wrong, but I've come round to the view that it must be best to share/talk (hence the reason I joined the forum) and you are not alone. Keep posting and writing in down does help, even as a form of escapism to see your thoughts. 

My husband of 52yr has parkinsons and we have not yet told our two teenager daughters (16 and 14yrs) - so at this point I am probably contradicting myself.  The girls have picked up on symptoms - memory and temors - but I'm trying to shield them but if you know does it enable to to 'deal' with things rather than not knowing?  The not knowing is the hard part, learning not to worry is an art but please off-load - is there a family friend, teacher? 

 


#6
Hi Coast, Talking does help and sharing with family takes the strain from the PD sufferer. It can be very stressful trying to hide symptoms from people. I too have 3 teenage sons similar ages to your children. It took a few months to tell them. Although they were upset, as long as they knew I have years ahead of me, they calmed down. Kids can sense a lot more than we realise. I've recently spoken to their form teachers, who have assured me they will watch out for any issues. I check in with my sons every so often. Life for them is kept as normal as possible and I try to keep things positive. I don't know if this helps because everyone deals with things differently. You'll know when or if you're going to tell your children as you know them better than anyone.

#7

Hi Lil Poundcake      It is almost impossible to cope alone for any length of time with such a worry, as you end up with your mind going around in circles - my own experience.  You seem to be a carer for your mum.  There is help and support for carers in many towns.  If you do not know how to access this, have you tried to phone the Parkinsons help line at the top of the page?  They will give advice on all issues.  If you can talk to other carers face to face it will help, as well as this forum.


#8

Lil Pound cake, bless your heart....it's very difficult to give you advice and to say don't worry because you will and as I am the one with PD you see things in a different way to your mother, sister or children, so I can only share how my two boys deal with it the best of my knowledge.

I was 47 when I was first diagnosed 10 years ago so my youngest son would have been 18 and the eldest 23, my youngest was still at home and is probably, well no he is the more sensitive.

He found the diagnosis very difficult, he didn't speak to me much but his girlfriend at the time told me how upset he would get and this made me feel so sad for him because I couldn't seem to help him.

As time has gone on we talk more now but he so obviously still worries alone, we were watching a video of some treatment the other day and he said does this not upset you looking at what might happen and I said no because it might not and that's not how I am now.

All I can say to you is a) Live for today what you think might happen may not,  yes it is a progressive disease but everyone is different b) Talk to your mum or if you can't then write things down, write down your feelings they say it is good to write your fears down and get them out your head c) Find someone to talk to, they don't have to have expert knowledge on PD just someone who can listen

Most of all we are here, we may not reply straight away but I'm sure people will to support you.

Take care


#9

HI Lil Poundcake, Your post struck a chord with me as when my now 18yr old learned I had PD she didn't fully understand till starting High school and at that age things are soon made clear what it means. Like yourself she kept things hidden of how she felt and feared for my future and we assumed it was school as when we mentioned if anything she wants to chat about even the condition we will explain best we can she just said it's ok teenage angst.

It's not you really need to talk  about this and I don't mean future just about living with this now. You need to seek support and found schools are great for this. Contact the PDUK carers section of this site and please try to talk to your mum about how you feel and if you both find it hard to discuss it together do  it with a counsellor or such who are very good as I found from experience. I'm certain your mum has a idea what your going through and may feel she doesn't want to burden with you been so young and getting through school but also know she wouldn't want you suffering like this and you will also be helping your mum.

They will be loads of people on here who have deal with these issues. It may same a lonely place for you but you have taken the first step so don't stop as there will always be some one to listen and help guide you and your mum. You will always hear about the negatives of the disease but a life can still be lived and as sufferers we some times need a push to get moving and you will also be helping your mum which i can read is what you want to do.

So please tart the ball rolling and contact site as they will be more than willing to help. You don't have to deal with this alone.

John


#10

P.S. Hope your not laughing at my Spelling and Grammar.