Diagnosis yesterday and so many questions


#1

I’m 47, Datscan confirmed yesterday PD. Lots of positivity required as I am very upset as I have a 2 year old and 5 year old, when should I tell them, how will it affect them? I have an appointment with consultant next week, so desperately trying to read up as much as I can, but any suggestions of questions to ask would be helpful.


#2

Hi @Cleo,

A warm welcome to the forum.

Finding out that you have Parkinson’s affects everyone differently and you may go through a range of emotions which is completely understandable. However, no one should have to face this alone and we have a ton of information and support on the ‘newly diagnosed’ section of our website for people just like you who have been recently diagnosed. You can find this here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

We’ve included information on financial help, support for your family and questions that you should ask your doctor that I think will be really helpful to you. You can download an introductory guide to Parkinson’s which contains info about symptoms and treatments here - https://s3-eu-west-1.amazonaws.com/puk-live-1-d8-ie/2017-03/Parkinson’s%20and%20you.pdf

You can also find local advisers and self- management groups in your area using our search tool on the above page. Our helpline is also here to support you any way we can and you can ask them any questions about your diagnosis. You can reach us on 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm.

We have a lovely community here on the forum so please feel free continue engaging with our members.

Hope this information helps.

Best wishes,
Reah - Forum Community Manager


#3

Hello Cleo
I’m reasonably new to this forum but felt the need to reply to you as I can imagine how upsetting this must be for you.
My husband was diagnosed in February at the age of 52 after several years of symptoms.
We have been telling the GP for years that we suspected PD so it really shouldn’t have been a surprise to us. To be honest, it was a HUGE shock even though we knew in our hearts.
All I can say to you is that the medication has reduced my husbands symptoms greatly and he’s doing well from a PD point of view (he has another issue which nobody seems to be able to tell us what is going on) but his PD is well controlled. He’s still not as flexible / quick as he used to be but he’s doing ok.
We got in touch with our local PD advisor who has been a great help and have also called the Parkinsons UK helpline several times in tears in the first few months.
We also have a great Neurology team who are VERY approachable.
I would strongly recommend you use the great resources available as they really do have lots of knowledge and are great at putting your mind at ease.
I’ve found this forum great too as there’s always someone willing to share their knowledge and experience.
Unfortunately I can’t offer any suggestions of questions to ask as we haven’t got enough knowledge or experience of this yet but I’m sure there will be plenty of people who will respond to this.
We are just coming to terms with it and feeling more positive.
Hopefully once the medication starts to kick in your symptoms will reduce (like my husbands) and you will just get on with your day to day life as before. I do believe that exercise is very important and so if you can stay active it should make a difference.
PLEASE remember when reading up on this condition that not everyone gets all the symptoms so please don’t frighten yourself (like I did).
Good luck with your appointment. Hope it goes well and you get some reassurance as well as info.
Kind regards


#4

Hi Cleo,
Its a big blow when you’re diagnosed and with two young children there’s no time to rest. I probably wouldn’t say too much now as they wont understand the ins and outs. To be honest when i told my 3 boys (15and twins 13 at the time), they just wanted to know that i wasnt going anywhere. As things arise ie. fatigue or stiffness, just be honest.
As far as questions for consultant, look up meds, ask whats the best for you, if any at the moment. Ask about a pd nurse and support.
A good fb group is Start Living Today PD. A positive page with all ages and stages.


#5

Hi Cleo, I know you will have lots of questions to ask, but the thing to do is as things happen or change your routine write them down, then post them on the forum to find some sort of feedback, we’ll help where we can. You should also be assigned to a PD nurse to get some reassurance from, or you can phone the helpline and speak to one of their PD nurses, with this helpline you do not have to feel you are on your own dealing with PD. As for your young children, I have two young grandchildren age 10mths and a 2 year old, and it is amazing how they soon learn. When changing nappies for instance they seem to sense that they have to lay still as long as it takes because Nannie is a little slower!

All the best - sheffy


#6

Hi Cleo
I’m newly diagnosed in May. I have two boys aged 7 & 5.
They know Mummy has a poorly hand and takes pills to help it work. I figure that’s all they need to know.
I’m trying to concentrate on the now and enjoy everything I can do at this time, including running, catching and tickling them :slight_smile:


#7

Hi Sherry, I havn’t changed my granddaughters nappy since being diagnosed 5 months ago. I find it the most distressing part of this illness that I can’t look after my granddaughter as much as I was before diagnosis. Ok for a short time but don’t feel like I could handle any tantrums or those times when they like to throw themselves about.
My parents used to be very hands on with my children and I was looking forward to having the same relationship with my grandchildren but PD has put paid to that.


#8

Hi Margs, I’m on a trial run to help out if I can for two mornings a week with my grandchildren! My husband is a great help after I have changed the nappy he helps re-dress them because this is where I struggle, especially with buttons and press studs ect., I have had parkinsons eight years now and try and make the most of having the grandchildren, because I wouldn’t want to miss out on their life, they are at nursery most of the time. As I said children learn quickly and sense that something isn’t quite right, I don’t know how old your granddaughter is (mine is just 2years old) and she seems to know at that age that I am not as agile as her granddad and her other grandparents. I think she understands to a certain extent when I lay down and tell her that Nannie is tired. Please don’t give up, you will find the strength from somewhere, PD is not the end of everything, though sometimes it feels like that in the early stages, but at times we all just pick ourselves up and battle on. I hope you find that strength…

All the best - sheffy xx


#9

Hello Cleo
I hope you have felt supported and maybe a tad less at sea. All i would say you need to do just now is give yourself time and keep asking about things you don’t understand, want to know or whatever but you don’t have to do it all at once, go at your pace. As for the children keep your answers to questions honest but simple, same for any explanations you feel the need to give I think you will be surprised at how matter of fact they may be. As an add on to thè info given re the website this leads directly to the books written for children
https://www.parkinsons.org.uk/information-and-support/childrens-books
Let us know how you are doing. You are not alone.


#10

Hi Cole

I am a mum of two children and I am got that news ages 39, so I really do understand how upset scared and trumtited you must be right now.
I understand you must be shock and maybe a little confused at this news due to your age, but I have now found many others of a seminar aga group.
When I got that news my husband told me they have it wrong they are just not sure. But than they started me on the medication and you know it started to see a difference in my symptoms as very greatly they started to slow down.
I am not saying I can cilbm any mountains but I can move more and do things alittle more than I could with the kids. ( I still have other issues) which we are working on too.

As for support you can us Parkinson uk asi rang them many times most of the time they couldn’t understand a s I was so Unset but they found a way. The most useful thing I have found is this forum. I have found this forum very helpfully and all the people. Every time I have reached out for advice and support the people on this forum have givien it in buckets full. I don’t have any family suport apart from my husband so their forum have taken that place and I am so happy for their help.

As to the question well I did ask whey I could think of at the time and you know I still am asking different questions, but the first ones I can remember where these is Amy good for you.

  1. What is the medicine and how fast they could help
    Me
  2. Is it curable?
  3. Did I inherit it from family
  4. What are next steps
  5. What does this mean for my future
    6.i did also ask him are you sure you not got it wrong due to my age

You didn’t need to ask any of these but this is what’s cams to me. But they may not be able to answer all your questions too so be ready for that. As it depends person to person. Oh I wrote my question do as I find I forget this way you can be sure you got the information you wanted.

Finally I want to wish you all the best luck at your appointment and please keep touch. If you have someone to take you to the appointment than do so.

Kind regards
Raz


#11

Hi Sheffy,
Your reply has cheered me up no end. My granddaughter is 16 months old and I used to pick her up from nursery two afternoons. We had to stop that before I was diagnosed and feeling very ill. She now goes to nursery all day, but my daughter only works 3 days a week. I’m moving nearer soon so hoping to help out of or short periods, say if my daughter wants to go shopping or have her hair done etc.

Unfortunately my other daughter who has a 7 week old lives in Wigan, not too bad a train journey so hoping to spend lots of time visiting.

Can’t stresss how uplifting your reply is. Think Parkinson’s makes me more emotional.


#12

Oh yes Margs, Parkinsons is not straight forward and cut and dried as people make out, and no two people are ever the same as each other. Emotion is all part of the Parkinsons, that is one of the things that a lot of us do suffer from. I am so glad that I have given you some inspiration, It can seem to be all doom and gloom in the beginning, but we learn to accept it for what it is and believe you me I have been through all the emotions that you have had, and come through. So stay focused and enjoy the bumpy ride!

All the very best and stay in touch - sheffy x


#13

Hi Cleo

When you’re first diagnosed, a thousand thoughts race through your head, but fortunately this disease normally progresses very slowly and you have plemty of time before you need to make any decisions. Obviously it’s initially quite a shock but hang in there…

I too was diagnosed at 47 after having symptoms for a few years. I told my daughter when she was 12 and she is just fine with it, but I waited three months until the initial turmoil had settled down. Not sure if this helps as your children are younger but I wrote about it at the time:

I had made the decision a few weeks back to tell her in the Easter school holidays. It wasn’t a difficult decision: I was brought up in a very open environment where nothing was ever kept a secret for long and grown-up topics were openly discussed. I’m a firm believer that children respect their relatives for telling the truth, and telling even white lies only breeds resentment further down the line. Certainly, as a child I could easily tell when my grandmother was twisting the truth and, despite her many positive qualities, I disliked her for it. At 12 years old, I was confident Rosa would appreciate me telling her, if not now, then in later years.

It was Sunday morning.

“Rosa, there’s something you need to know,” I started as she was lazing on the sofa playing Minecraft on her iPad. “I have a disease in my brain.”

She looked at me and smiled, thinking it was a joke. But she quickly clocked my serious expression, stopped her game and paid attention.

“It’s called Parkinson’s and you’ll find out more about it when you’re older. I have a disease in a tiny part of my brain which in the future will cause problems in moving my arms and legs. Your Dad will have shaky hands. I’m taking medicine for it but in a few years’ time the medicine will start to wear off.”

“Is it causing the problems with your eyes?” she responded.

That’s my girl, I thought, and immediately felt vindicated of my decision to tell her.

“Possibly,” I said and then explained a little more about the causes of my double vision.

It wasn’t a long conversation and we pretty much left it at that. I told her not to worry and that the symptoms would come on only gradually. I was nervous before telling her but felt so much better afterwards. And now I have an excuse for being rubbish at badminton and tennis.

Best wishes
JF


#14

I have gradchildre one has autism we call pd grandmas shaky disease. M wborn great granddaughter likes the rhythm


#15

I was diagnnosed 18 monthsr agoofolliowig 4neuroilogistsover5 years’ . Ory foor the bad typing
the expert’s can’t agree so don’t worry about it you will find your wa through thee fog


#16

Hi Cleo
Sorry to hear your diagnosis. I was diagnosed, when I was 46 (3 years ago) and my kids were 7 and 9 at the time. I decided to tell them straight away and they have taken it very well. They understand I have challenges and can’t do as much as I used to, but I am still there for them and we probably have had more quality time together since.
I had 2 books from my PD nurse, I think they were called “my Daddy has Parkinson’s” and “I’ll Hold Your Hand So You Won’t Fall”. I cried for hours when I read them, but they were very good for the kids. PD is challenging, but everyone is different and hopefully your symptoms will not progress for a long time.
Iain


#17

Hi Cleo,
thank you for sharing your diagnosis on here, I am 46 and was diagnosed 2 weeks ago, I too am totally shocked and a little scared, I also have Neurofibromatisis type 1, which has caused its own problems, I started sinemet 3 days ago, I am feeling very nauseous and tired today, I guess it’s going to take time for things to settle, your post has helped me as I am coming from a similar place as you, wishing you all the best


#18

Thanks all for your positive messages, its helped enormously. I had my consultant appt today and am on 2mg ROPINIROLE RequipXL, I have already shredded my credit cards,as Mr Boden already takes too much of my salary pre-meds… We are trying to think about bringing our life plans forward now, and having happy times with our little children. I know progression is unique to the individual and the Dr today would nt even give averages for different stages, but just wonder if anyone is able to give any indication of how many semi-decent years we could be looking at, am assuming 10 ish?

Also exercise is now a top priority - any recommendations for whats really beneficial?


#19

I am newly diagnosed and started by getting the PD Warrior book. I can do most of the exercises at home but will try and find a local group to do a weekly session. Having a group tends to keep you motivated although the desire to delay the progression is plenty of motivation most days.

Jim


#20

Pd Warrior is a great form of exercises. Unfortunately for most neuro physios the licence is very expensive. So look for a neuro physio (your pd nurse may help you find one) who may advertise as ‘pd warrior type exercise’. Or Parkinson specific. Worth doing at home. Remember its not the amount of repetitions of each movement but the intensity. Big movements are great as with pd every thing gets smaller ie. Steps, writing and voice.