Help please - My mother has just been... - Parkinson's New Z...

Parkinson's New Zealand

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Help please - My mother has just been diagnosed with Parkinson's Disease. I dont know what to do :(

JadeK profile image
15 Replies
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JadeK
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15 Replies
Cherohn profile image
Cherohn

Hi there. Learn what you can about Parkinson's from your mums Dr, to understand how to deal with the symptoms that she is experiencing, gain support from the Parkinson's Society and your family. Surround yourself with a great support group who can be there for you so you can help your Mum. My mother was diagnosed over 5 years ago and not having that support group is making our journey a difficult one. Stay strong and good luck

JadeK profile image
JadeK in reply toCherohn

Thank you so much for your reply. It feels odd - cant fix the problem. Have been reading as much as possible. Need to know everything there is to know about PD. Wish you well friend. Thanks again.

Cherohn profile image
Cherohn in reply toJadeK

I tried at the beginning to "fix it" but realised that isn't possible. I have done a lot of research and am constantly looking for ways to make my mums days more comfortable. Keep in touch as talking with someone else who is having the same issues makes me realise I am not fighting this battle alone.

JadeK profile image
JadeK in reply toCherohn

Your definitely not alone, guess my family's journey with PD is just starting. My mother already has the "quick step" walk, "gang sign" fingers - no offense everyone, giving it funny names is our family way of coping.

cafelatte profile image
cafelatte

Hi

find out who the field officer is. They are so helpful.

My field officer helped me get in touch with others my own age who live in the same area which has been so helpful to me.

JadeK profile image
JadeK in reply tocafelatte

Thank you for your advice and kind words. It is a shock and as the eldest son I feel like a should be doing all I can to "fix" it. Wishing you well and thanks again.

cafelatte profile image
cafelatte

It is natural to want a quick fix.

Lots of us are dealing with it and we come to realize that life goes on.

Each of us is going through a different journey.

Parkinson's NZ has some very helpful information books.

Cleo23 profile image
Cleo23

Read Ann Andrews book - Positively Parkinsons. It explains all. But most of all be Positive

Its not all bad and life can go on as nearly normal.

JadeK profile image
JadeK in reply toCleo23

Thank you Cleo23, taking a look for the book now. I was in shock yesterday, my family was so healthy - large but healthy. At least we know what it is now.

scooterboy6 profile image
scooterboy6

Hi

I was diagonosed 4 years ago next month with PD, 2 weeks after my father passed away, so double whamy. I have good and bad days, talk with your doctor, family and friends, med's make a big difference what suits one person my not suit another. Get refered to a nurologist for a baseline assesment. Going forward this gives a measure as to how bad, static you are. Remember KEEP POSITIVE Learn to accept quickly, fast or hurry-up are no longer words in my vocabulary. Learning to accept that life is slower is frustrating at times, depression is a symton of PD ensure you dont get prescribed anti-depressents without questioning their suitability or symtoms can show up / mask whats really happening.

Walk / excercise daily even if you dont feel like , keep your brain and body active. See youtube for many items stories on our problems. TRY some it's fun - some work some dont we are all labbeled the same but react differently. Onwards and upwards theres another day tomorrow for what we forgot today

JadeK profile image
JadeK in reply toscooterboy6

Wow Scooterboy6, that is a lot to go through! I keep holding onto words I heard somewhere (don't ask me where lol) "what doesn't kill us will make us stronger", my mother is the one diagnosed with PD and when I think back she did suffer some "down" times, it started about a year ago. I thought she was just not paying attention to the good things she had. I feel quite guilty now when I think about it. I love your quote "Onwards and upwards theres another day tomorrow for what we forgot today" do you mind if I use it? Was taking a look at the Adventure travel site on PD Org. maybe mum would like to do a trip with me? Man, how quick life can change. ok, ok not going to get teary. had enough tears yesterday.

scooterboy6 profile image
scooterboy6

Hi

Yes welcome to use that quote or any think you think will help. Once your Mum accepts the fact she has PD thats the first day of a new beginning. Get out and enjoy!!! Do remember though I find if I do too much one day I tend to suffer and want to sleep the next day. Breaks your adventures into smaller steps - Drive half as far as usual then stay over night somewhere and then take next step the next day the same. It's easier on us (even just sitting) while being driven wears us out!!!

Regards to you both

hagan profile image
hagan

I recommend you get in touch with your local Parkinson's Support Group. You doctor should be able to give you their contact details. They are very good and you meet up with others with Parkinsons.

Andy_M profile image
Andy_M

Ask her what she needs.

Read Ann Andrews book.

Go to neuro appointments with her.

Be there when the Field Officer visits.

Accept that she might take a while to adjust. Let her dictate the pace.

Keep providing her with options and love. i.e. she may not want to read a book or go to groups just yet

Also attend to your own grief, needs. It's sad and you will be going through the same process yourself.

The mere fact that you are here asking tells me you will be just fine.

Kia kaha and aroha to your whanau.

Laus4785 profile image
Laus4785

Hey Jade,

Sorry to hear about your mum being diagnosed with PD. Don't feel like it is just you going through it and there is knowone out there who gets it, because we are all here on this site and understand too. My mother was diagnosed 5 years ago when she was 56 - it was scarey because I had no idea what parkinsons was other than "people shake a lot" (which isn't really a huge part of it now because there a lot of meds which help this), and also that Michael J Fox had it lol.

Mum has had ups and downs since being diagnosed and it progressing a bit, but I think we are lucky because she is still working, has a good group of friends and can walk around etc. Of course she gets really tired and I wish she didn't have it but i'm grateful that she is moving around and still working etc.

I love that you make jokes of it because me and my mum are fully like that too! Everyone is different but I find (and mum too) that joking and laughing about it helps us smile and have a laugh.

I'm sure you guys will have ups and downs but you will get through it with your good sense of humour and good doctors and meds :)

If you're having a bad day write on here and i'm sure someone will make you feel a bit better.

Wish you and your mum all the best x

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