Newly diagnosed parent


#1

Hi there,

I have this weekend discovered that my mother has been diagnosed with PD. While it is something I am not wholly surprised about - she has increasingly had a tremor over the past couple of years - it is still a bit of a shock to have our suspicions confirmed.

I don't know what I want to post here... As yet I just want to try and get some information and hear stories from other people in this position. I want to try and help my mum (who is in her mid-60s) and Dad (approaching 70, and suddenly finding himself in the role of carer) as much as I can.

(I did find it ironic that the day after I find out about this diagnosis, Parkinson's Awareness Week kicks off!)

CKPonderings


#2

Hi CK - great screen name and avatar

I'm a little younger than your mum at 63, and I'm the person with Parkinson's. All I can say is your parents are fortunate to have someone to look out for them. My other half is a decade younger than your dad, and I know they will find it harder as I get further along and they get older.

You'll find support and ideas right across this forum, so do browse. Quick thoughts to start you off: PD is often slow-progressing, so giving you all time to adjust. It's not the end of the world - there's life in your mum yet! Support each other - I often think that it's not me that has PD, it's the family. Carers are saints, angels, and heavy lifters rolled into one - but also human; don't try too hard.

And feel free to ask, opine and rant here. We'll listen

Regards to your mum and dad

Semele


#3

Hi there, Semele,

Many thanks for your response and your kind comments. My username's from a photo blog I have, while the image is just something I had a bit of a play around with!

I am sure it is going to be a huge challenge for my parents - my mum hadn't been to a doctor for close to 30 years and I am SO proud of the way that she plucked up the courage to do just that last week. I have noticed a slow deterioration in her health over the last few years, which has included a worsening hand tremor, but I have inherited my stubbornness from her (she would readily acknowledge that) and no amount of persuasion or coercion would have gotten her to a GP before now.

The big difference for me is seeing my dad very readily stepping into the carer role when I saw them over the weekend. Having seen him slowly age since he retired a few years ago has given me a sense of my own mortality (who likes seeing their parents get older and less able?), as I mentioned, it's disheartening to see someone approaching 70 almost start a new job as a carer.

It sounds really awful, but suddenly my parents are the sort or married couple you see on the charity adverts for Comic Relief. I want to be there for them, to wave a magic wand and make everything alright. They should be in a position where they are able to relax and take time out, but suddenly, very unfairly, they are on a long road, facing a huge mountain range with a steep climb ahead and no idea when or how they are going to reach the top and what lies ahead of them. And I feel helpless, totally helpless.

I know it will take time to adjust, and I know that there will be many downs as well as many ups along the way (something I was talking through with my mum at the weekend, but I never listen to my own advice!), and I thank you for showing me that this is the sort of place where I rant, talk, listen and learn.

Thanks and best wishes to you and your other half.

CKPonderings


#4

Hello CK

Sorry to hear about your parents life change.  We are in the same situation.  OH is 81, I`m 72 and caring for him.  We have two children and my experience is that it is worse for them than for us.  They worry about us and the future but we are just busy living the life we now have.  Yes we have seen changes especially to our hobbies, entertaining and holidays but we are enjoying things we wouldn`t have thought of doing before.  Everyone slows down as they get older and has to make adjustments and Parkinson`s is really no different.  As Semele says, it is slow acting so there is time to adjustments.  Sit down with them and tell them the things that worry you and find out what support they would like.  Maybe none now but keep the conversation open and you`ll be there when there is something you can do.  We now get more phone calls, e=mails etc and they are a great pleasure and support.

Best wishes to you all

Hatknitter


#5

Hi there, Hatknitter,

Many thanks for your kind words. It's really difficult at the moment, and I guess it'll take time to adjust - for the person with the disease, the person caring for them and those around them.

Your comments are greatly appreciated, and have definitely given me a couple of ideas on how to think and how to approach things.

Best wishes,

CKPonderings


#6

Good postings CK, they're making me think.

Major point: you're not helpless. You're anything but helpless. You have the potential to be extremely helpful. The way you talk about your parents suggests to me you have a really good relationship with them, and this will be vital. You can talk to them and find out what they want - Hatknitter's right.

Are there things your mother wants help with? Are there things she'd prefer to do by herself even if it takes time? Does she want people to know she has PD, or is it something she wants to keep private (even my mother in law doesn't know, and she lives with us)?

Do you know about Family Carers? have you got siblings to share the load? Can you take your dad down the pub and tell him how great he is?

Cheers

Semele


#7

Hi there, Semele,

Thanks again for your reply. 

Logically I know I am helpless, but it's the first real time that I've had to 'step up to the mark', and there's little I can do to take this away from mum. I know what I mean to say, but it's not coming out that well. I think of all the times that she has helped me when I am ill, taking away the pain, etc, but this time there is nothing I can do. While there are drugs and various remedies, this is only going to get worse, albeit slowly. That's where I feel helpless, although I know I shouldn't.

My parents are seeing a specialist over the weekend, so I will have a better idea of what they want and what they need from there. I have to say, the Parkinson's society has been amazing - I ordered almost every leaflet under the sun from them on Sunday and a fat envelope appeared on my doorstep yesterday. I don't want to crowd my parents or overload them with information, but at least I will be better informed. (Even reading through it yesterday, I feel as if I know tons more!)

Mum and dad definitely want to keep it to themselves, at least for now. The only people who know are my parents, me and my other half. I think that's more down to them coming to terms with it than wanting to keep it quiet, but think my mum feels there may be a stigma attached to PD.

Being an only child, there is only really me (and my other half) to support them; we live a way away too, so it's not always as easy to go and see them as it could be. I've not heard about Family Carers, though trying to get my dad on his own might be a good option, I just need to work out how!

Thanks again, Semele; it is really good to have someone in this position that I can converse with.

CKPonderings


#8

Hello, CKPonderings --

I'm late picking up your postings and the responses to them, but I want to reply because of the similarities in our families and the encouraging story I can tell.  I am now 68.  I was diagnosed at 56 but had already had PD at least five years.  (Only in retrospect did I realise that my stomach problems were caused  by PD.)  My diagnosis came one month before the wedding of our only child, a son.  Therefore, I kept my condition a secret until after the honeymoon.  My husband, like your father, switched from carefree retiree to caregiver instantly.

I can understand your mother's feeling that there is a stigma attached to PD.  When I first got the diagnosis, I had an illogical sense that there was something shameful or discrediting about having a progressive disease.  That reaction didn't last long, but I recall wanting to be secretive and keep the news inside the family awhile.

One major difference in your parents' story to date and my story is that two years ago my husband died of a very fast-developing case of cancer.  As a widow, I am running my own household and caring for myself.  But the best thing I can offer you is the knowledge that most PD cases are slow-moving, and some cases barely progress at all!  The latter has been my good fortune.  If the right medication or combination of medications is found, and if your mother gets lots of rigorous exercise (as much as her body allows), she may be lucky, too.  If she had a tremor that took two years to increase noticeably, I'd say her case was not advancing rapidly.  Even after 16 or 17 years of PD, when I meet new people, they do not guess I have this handicap.  I do have symptoms, but they are usually suppressed by my medications.  I hike, play classical piano, work out at the gym, practise Tai Chi, engage in the academic pursuits I have always loved.  And I travel as well.  At the moment I am excitedly looking forward to a riverboat cruise in France from late April to early May!

As others have said, the loved ones often suffer more than the PD patient.  I think my son and my sister were more affected than I at first.  Now that we have all been living with this disease for years, we are quite accustomed to it.  In the future, I know, there are rougher times waiting for me.  But I concentrate on enjoying the present.  I sincerely offer good wishes to you and your parents.

J