Partner diagnosed with Parkinson's on Wednesday .....

[catseverywhere]

.... and I stupidly decided that 'information is power'. I googled and read everything I could find on the internet, and what I have learned is that information is terrifying.

The beautiful, vibrant, amazingly intelligent, kind-hearted, selfless woman with whom I am in a civil partnership is going to be reduced to a shuffling shell? And no one knows whether that will be this month, this year, or whether she might have years left before anything begins to kick in.

How does anyone ever come to terms with this?

I'm so sorry for your news cats, I have no direct experience of Parkinsons but have lost two friends to cancer and another friend is terminally ill.

It is immensely hard watching a loved one deteriorating and everyone copes with it differently. My coping mechanism has been to lend on others for support, others find counselling helpful. I also have a very open relationship with my friend who is dying and we can have very deep conversations about the future.

Does your partner want to talk?

I'm so sorry to hear this cats? Are you receiving any support from the medical community, I thought there were different types of Parkinsons but I could be wrong.

My partner has MS, his father has Parkinsons and his uncle had Alzheimers -all neurological conditions and it does make me very concerned for our son as there is obviously a strong hereditary connection going down my partners lineage.

I would suggest stop scaring yourself by googling and maybe contact the relevant charity or find a support group online where you can get more of a realistic picture.

Hand holding.

Sorry to hear this. How old is your dw?
Information can be power, too.
My uncle has been medicated for the last 15 years, and is functioning well. He goes for long walks every day, he does the cooking and cleaning and shopping, and is a house husband. My aunt, in her seventies are still working, and he is 80 soon. He was diagnosed some twenty odd years ago, and it has been slow. You would not notice, aside from a slight tremor in his hand now and then, but for a man of nearly 80 he is keeping well!

It is true that Parkinson and neurological conditions like it, can manifest in a cluster in families, ranging from Parkinson, to Alzheimer (which my other uncle has) and Levi Body dementia (which my mum and her mum again had)

Does she have any other family? Siblings? Children?

Really sorry to hear this cats, my dh was also diagnosed just before Christmas. Its a double whammy as he has been fighting advanced bowel cancer for the last 7 years. He has a really bad tremor in his left hand, shuffles when he walks and I have noticed his voice has got a lot quieter, all symptoms. He has been put on meds, Mirapexin which is supposed to help with mobility. No improvement so far, but he basically can still do everything he wants, just a bit slower! Has she seen a Parkinson nurse yet? We got an appt with ours about 6 weeks after he was diagnosed, he was amazing, very upbeat. She said, "go home and try to forget you have Parkinsons, you will die with it, not because of it"! Good advice I thought. Good luck. xx

Thanks, everyone. My partner is 54, she has family, her mother is still alive and she has 4 grown-up children and a brother, although none of them speak to her because of our (same-sex) relationship. We are waiting for an appointment with a specialist nurse, which will be good because we didn't take in much of what the consultant said at the appointment on Wednesday.

DP is very open to talking, we have done so endlessly since the diagnosis, and she has gone into 'practical' mode - we are arranging powers of attorney, and she has got it into her head that we may need to sell the house at some point if we need a bungalow or to be nearer to the city (we live in a rural area and we might struggle to get carers out here - I have told her I will be her carer if it ever comes to that) so we are planning a few home improvements to increase the saleability of the house. Tbh, I'm just going along with whatever she feels she needs to do to come to terms with this at the moment.

My mum had Parkinson's for many years (she died 2 years ago, in her 80s, and not related to PD.)

I posted on Triplets thread about her DH. I was terrified for Mum initially, read all I could about it, worried constantly; but the reality was not that bad. She had good and bad days, but it was when she went into residential care (because of other conditions) that she really improved. It was simply because she was getting her meds on time, every time. That is the one piece of advice I would give anyone with this condition. She wasn't self-medicating well at home, but was like a different person when someone prompted her!!

Hello cats, sorry about your partner's recent diagnosis. Things will get better over the next few months. I think the shock of the diagnosis will have aggregated her symptoms. I hope she starts to feel better in both in her symptoms and her mood once she begins the early PD meds.
You are totally correct in thinking everyone's symptoms are different. The internet can be a depressing way to learn. I was diagnosed at 48 having had symptoms at 46. I know it's not about me, but it took me at least two yrs to accept, yet the low doses of amazing PD drugs are able to keep me symptom free so I can continue being mum of three and teaching full time in a secondary school. There are many talented scientists working on our behalf. Recent early vaccine to halt ( not cure) has currently been accepted on phase two trials plus the stem cell research gathers pace. The drugs themselves and new methods of administering them ( patches, liquid form) means doses can be lower and still as effective. If I could pass on any advice to you both, it would be that you do accept PD, you have assess to improved drugs, and life continues as just as before, albeit with a casio warch! For now I understand you are both in the one day at a time phase. My best wishes to you both.

So sorry to hear this. I have MS and was diagnosed just about a year ago, I appreciate Parkinsons is different but both bring that uncertainty about what the future holds which is very scarey.

If possible try and find some buddies in similar situations, they will be both great sounding boards and information givers. I've found life is a complete balancing act of going out and enjoying every thing I can whilst accepting the things I can't. It's hard. Counselling might help both of you but my best advice is to take your time, access whatever support you can and remember that disease progression is different for everyone. The Twitter community is great for MS and there are lots of positive blogs out there so might be worth trying to find out what exists for Parkinsons disease.

Thoughts are with you both.

Hello cats...like Louise I have PD. I was do in 2008 and I'm 45 now. Getting PD is horrendous but it is NOT the end of the world. Keep away from the scary stories and get to the Parkinsons Nurse ASAP. The nurses are just fantastic. I've recently collected my Parkinsons related blog posts together as part of a PD project I'm working on...you might find it helpful to see what challenges your partner might face. Not the physical really as everyone's symptoms are different but the social, mental emotional side of things. Good luck. Www.tremourhappy.wordpress.com