Concerned daughter of newly diagnosed Pops


#1
My wonderful Dad has recently been diagnosed with Parkinsons. As in the past few days. It has come like a bolt out of the blue. Im a nurse, but not within the neuro field and all I know of Parkinsons is the few people Ive met in an acute sense. This scares me, Im petrified of the future and I suppose Im reaching out for reassurance that this is something that can be lived with and isnt as bad as I imagine. End stage Parkinsons. Im aware that some of my emotion is actually facing up to my Dads mortality as he is our families hero in so many ways. The rock of the family that has had a rough time of it throughout the years. We would not have survived without my Dad. I have so many questions and dont know where to start. At the moment I cant get through the day without bursting into tears around 20 times. Any, any help would be appreciated. Many thanks:cry:

#2
Hi Giraffes and welcome. I know exactly how you're feeling as I went through it myself with my mum. With time you will come to accept and it doesnt feel such a shock. Remember your dad is still his own person and needs support but also to be allowed to carry on with his life as he wishes...cherish the many good times ahead and don't dwell on what may be, you just concentrate on the now :) that's what I learned to do. If you want to chat more, come and post in the carers forum as you will find people in the same situation there. All the best and this is a great helpful forum.

#3
Hi there
Sorry to hear about your father. Try not to worry too much about things. What will be will be. He may well be one of the 'lucky' pd sufferers where deterioration will be very slow. Remember, no two patients (or medications for that matter) are the same, Just get dad to get on with normal day to day activities and to do what he can. Yes there will be times when he needs help and he is lucky to have such a loving family member to help him. You say that as a non neuro nurse you know almost nothing about pd. You are not on your own - 99.9% of general nurses (and doctors) are the same. I recently visited a local large hospital to undergo eye photography and got told off in no uncertain manner and was instructed to keep still as I was ruining the photo. On being informed that I had pd, the retort was that that should not make any difference and to stop shaking the machine - Oh how I wish I could. Try not to worry too much and always remember that you always have the pd help line and forum friends to fall back on.
Chin up
Chunky

#4
Thank you both for your reply. I am finding that reading this forum is a great help already. I will post in the carers forum. Im new to all of this :grin:. Im appalled that you were told that in a hospital. Unfortunately not everyone in the caring profession remembers how to care or treat people with respect, whatever is up with them, but thats a different topic. I do appreciate your replies. Thank you

#5
Hi
Nice to meet you. My hubby has Parkinsons and when we first were told of the diagnosis we thought our world had ended. Two years down the line nothing much has changed apart from his shakes getting worse but than that could be down to medication. As chunky said no two people are the same and it doesn't suddenly happen overnight. Enjoy what the day brings and don't think too much about the future. Help when needed and you have to learn as a carer to stand back at times and let them manage things on their own. I live in the York area in the North of England and now we are "in the system" we always have someone coming to see us from the hospital or we go there so you are never on your own to tackle things. Don't be afraid to ask either on here or at the hospital you will always get a good answer on here from people who have years of experiences. Never think you are alone :)

Sue

#6
Thank you Sue x

#7
Hello, Giraffesandeskimos!

I'm responding to your post in hopes of cheering you with the possibility of good luck like mine for your dad. I know the first weeks, maybe months are difficult, especially for family members. I think my late husband was more distressed than I when I was first diagnosed. But I have had pd for 15 years now, and I am still leading my normal life! It can happen. My doctors started me on Mirapex first to counteract the early symptoms, then added Azilect when it came on the market. Whether it's the work of Azilect or merely good fortune, my case is progressing very, very slowly. As we do notice symptoms emerging, though, my doctor and I discuss and agree on increases in meds.

So the right medications plus as much exercise as your dad can work into his schedule plus an optimistic outlook -- those are the best recommendations I can make. And I like to recall with a laugh the stupid neurologist I first consulted, who told me that within 10 years I'd be confined to a wheelchair! Every case is different, but I wish your dad the very best of luck.

#8
Hi J. Thats wonderful to hear. Thank you. Yes Ive googled the meds youve mentioned and Im hoping that he will be as fortunate as you. At the moment he has only a slight and intermittent tremble in his right hand which has been the same for 2 years. It is unnoticable to the rest of us, until he told us. What a bundle of joy your consultant sounds. Im so glad that hasnt been the case. I feel a lot happier reading this and do feel better the more reseach I do. All the best to you and thank you for taking the time to reply.

#9
Hi again, G--
Just had to respond -- If your father has had no more than a slight, barely noticeable tremor for two full years, he is far better than I was at the start. Before I began meds, I had gastroparesis, an awkward gait, a stiffly held right arm, and difficulty using cutlery. I was losing my ability to write or play the piano.

My advice is not to look toward the final stages of PD. They are probably a long way off for your father. And if there is one thing that makes PD easier to deal with, it is that it develops in increments, allowing us time to adjust.

#10
hi giraffes

i was dx ten years ago and athough i have now given up work my pd is slow progressing i am not saying its been easy i now get dyskinisias and off periods which have just started in the last couple of years, but even with all that i can still do most of the things i used to do i joined my local support group its the best thing i ever did i have met some lovely people and both me and my hubby have a busy social life with the group i go to hydrotherapy classes once a week and tai chai once a week which is good for the balance and i really enjoy it, its not all doom and gloom you can learn to live with pd because at the end of the day your dads still the same person just a bit slower and he will learn to adapt good luck sue.

#11
Hi there

I'm sorry to hear your dad has been diagnosed with pd. I can empathise with your experience in hearing the difficult news. My dad was also diagnosed two years ago and in hearing the news (by phone) my throat ceased, my chest felt as if it was collapsing and I too thought my world had come to an end.
However, I am really pleased to be able to report though that he did not feel all of those things, whilst of course he was shocked, and we did ckry together a little to start with, he has been very philosophical about his diagnosis and has remained as close to his normal routine as possible. I find that he is in worse shape when he drifts off his routine and doesn't take the exercise he needs etc. he plays golf on a regular basis and with all the bad weather he was forced to be in his flat a lot more than was good for him.
It seems to me that pd is a disease that doesn't change your world overnight, the shock of it does but the actual illness is very progressive and sometimes quickly and sometimes slowly it is not the same for all. My position now is that I am trying to factor into my week a way of spending 1/2 days and nights with him a week so that I can start to live in his world and see what he needs, can do for himself and what he struggles with. That way I am hoping (planning) to be able to fit in where he needs me and allow him the freedom and respect he deserves to do what he can do.
It has taken me some time to get to this point by starting to work through my own grief process. I have a sister in America and I think she feels very like you sound, for her it is the distance that is a problem (and I don't know whether we are all the same or not ) and for me I need to see things for my self to be able to make up my own mind rather than just hear it on the phone, that bit I found very hard..
The other tools I am using is 'one day at a time' as so many other people have said, we really don't have any control over the next breath any of us take and so that helps me feel less anxious too.
Be kind to you in this process......

#12
Thank you for your kind replies. I really do appreciate you taking the time to reply to me. Unfortunately due to my husbands work, we live 200 miles away and I am not in a position, at present, to live nearer to him. My instinct is to move next door and just be there for him, but its impossible. My husband finds it hard to know what to say or even how to react to my grief as he cant see why Im so upset. At present we are not really speaking to each other which is all round stupid. But hopefully we can muddle through and I can move onto the next stage. My Dad seems fine at the moment and Im being strong for him. As long as he cant see me falling apart behind the scenes then Im sure its what he wants. he has already asked me to take care of his wife for him and as long as we are okay he will face "his lot". Thank you all for your help and wishing you all the best for the future xxx

#13
Hi Giraffes,

I just had to reply again as I can empathise with everything you have said. Do try and talk to your hubby when you feel up to it, I'm sure he wants to help and support you as best he can. I appreciate just talking about it is hard at first - I couldnt' even bring up the subject without getting emotional, but with time I am able to talk easily about it. I also live 200 miles from my parents (they did live a few miles away but moved last year), so I can't just pop round like I used to be able to. It's tough so I can completely understand your feeling of needing to be there. Remember that nothing changes overnight and regular contact with your Dad will reassure you that he's doing alright. Family support and being there for each other is a wonderful thing for all of you. :wink: