Hello, im a tad scared. 35 and recently diagnosed.


#1

Hello, im 35 and recently diagnosed with young onset PD, its been tough, anyone out there of a similar age who I can chat to? Regarding ways of coping etc? Thanks


#2

Drew at 65 I sympathise that you have been diagnosed with PD at such a young age. I find that the best coping mechanism is to be positive in your take on it, make fun of the disease and let others laugh with you. Don’t change your life because of being diagnosed with it, carry on as normal as you possibly can as it is not an instant life changer, in time you will do things slightly differently and if people see you struggle with something don’t snap at them when they offer to help but accept their kindness, it is nothing to be ashamed of. Don’t be afraid to tell people you have the disease and you will find out who your true friends are, in fact with many people you meet in life some will know of someone who has the disease as one in 500 people have it so it is not uncommon. Take it one day at a time and look on the Forum in the Information & Support section to learn more and get the information you require as everyone is different and we all have different side effects to the main disease and we are all on different medications to help us. Wishing you well Drew.

Les


#3

Hi @Drew7,

A warm welcome to the forum.

I’m sure you’ll receive more words of encouragement from other members, however, I thought you’d be interested to know that we have a newly diagnosed section on the Parkinson’s UK website that other members have found very helpful. You can find this here, https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-support-events.

I appreciate that this must be a very scary and unsettling time for you, which is why we have a very supportive helpline service where you have the opportunity to speak to one of our highly trained advisers or a Parkinson’s nurse. You can give them a call on 0808 800 0303 and their
opening times are Monday-Friday: 9am-7pm, Saturday: 10am-2pm (Closed Sundays/bank holidays).

I hope you find this information useful.

Best wishes,
Reah


#4

Thanks @Reah, thats all very helpful, i thinks its going to take a while to sink in but its great to know that you are all here.


#5

Hello @cruisecontroller, thank you for your kind message. Yeah the age thing is a kick in the teeth, my dad is 62 and completely taken by dementia too so its a confusing time. I have young kids (1&4) and that hurts a bit that playimg with them as they grow my get harder. Definitely looking at it day by day is the way to go i think, and being honest with people. Thank you, its nice to know i can talk to people.


#6

Drew, this is what the Forum is about, knowing that you’re not the only one with the condition and that we are all here for you. You do have more than your fair share on your plate what with your father having dementia at a young age(62 is no age these days) and your young family. Don’t let the condition play on your mind, yes it is there but it isn’t instantly life changing. Savour every moment with your children while they are at this age, as when they grow older they will want to do other things that may not involve your good self. So long as you can keep PD at arms length and don’t let it get you down you will have the upper hand. I wasn’t diagnosed until I was 58 and it was a bit of a shock as my eldest brother had the extreme form of the disease with head and body shake and I was told it wasn’t hereditary but I am proof that it is. I have had Deep Brain Stimulation(DBS) done which controls the tremor with the help of Madopar but I do have the original tremor which is Dystonic so I am a greedy so and so and have TWO tremors !! Do I let it bother me ? I try not to but am aware that it is there but I live life as much to the full as I can. I have played 10 Pin Bowling and regularly play Flat Green Bowls in the Summer and play Indoors during the Winter months, it keeps me active as well as walking to town everyday to get a paper. You don’t become cabbage like overnight so stick two fingers up to it and get on with your life while you can. All the best.

Les


#7

Hi Drew.

I’m 37 and was diagnosed with YOPD in August. Would be very happy to chat with you.

Whereabouts in the UK are you?

Phil


#8

Drew, I feel your pain. I was diagnosed last year at aged 52 with a young family etc. I’m sure you had plenty of symptoms before you were diagnosed, I did and after the initial shock I was actually relieved because the diagnosis could have been much worse. I’m still at work full time as an assistant head teacher- hang on in there and keep working. Have you told your employer? They should make reasonable adjustments. I have found exercise really helpful in relieving symptoms. Walking,cycling and swimming have been excellent. Swimming has been great for improving posture.

Keep your chin up. Diagnosis is not the end.


#9

Hi Drew

I can understand your feelings, I was diagnosed three weeks ago @ 44. Like you I have a young family too and also uncertain about the future.

I’d suspect i had it in December 2017. Since then it took a little time to gather the courage to see a fresh Neurologist for a diagnosis due to the one I’d been under since October 2016 hadn’t done to much.

Sadly I’m unable to give you any words of comfort as I’m still coming to terms with it myself.

As for self help, I have been at the gym running and on the elliptical cross trainer plus running and cycling out doors. I will add that this has help with my physical movement, Back in December I was struggling to keep up with the kids and now I’m back to my normal speed. It is a struggle and if I’m miss one of my sessions, I can tell, but doing the exercise really is a boast for myself.

One think I did find comfort in was this Charity, the lady my wife spoke to just sorted everything out which before hand had been such a fight, it was only the third time I broke down since becoming poorly. The other times where when I figured out I was going to get no help from my doctors or neurologist as I was undiagnosed thus there was no help. The second time was when my wife realised it was Parkinson’s and started to cry which was more upsetting than finding out what was wrong.

I will be having my first session with the Parkinson’s Nurse this Tuesday to start my medication. From this point I have an enormous amount of trepidation, but it has to be done. So, I really do feel your pain

But keep positive, keep active and remember, everyone’s Parkinson’s seems to be different in some way, so if you are able to work around those parts, make it your mission to succeed as long as you can for you family.


#10

hi there i was diagnosed almost 10 years ago aged 44 but ny symptoms started when i was 38 it just took a while to get properly tested.it was mayhem at the start and iwas forgotten about so i went 6 months without any meds then the whole thing kicked in and the care ive had since has made up for it. when you get the right combination of drugs add in as much exercise as you can ie walking keep up your circle of friends although like myself you may lose a few due to them not knowing how to treat you a social life and finally lift the rug and sweep the parkinsons right under it. i find it works for me i know everyone is different but you have to try everything to find out what works for you. try not to be scared life can still be good i was diagnosed christmas eve 2008 no christmas dinner for me that year but plenty since xx


#11

Hi Drew, its a scary time for you and your family but as everyone above says, life is not over just different. It’s a change in your life that when you come to terms with it, you will see that meds, exercise and a positive attitude will get you through most days. You will have down days, that’s fine, juat get up again! Yoga, PD warrior exercises (find on YouTube) walking are all good.


#12

Hi,
I’m 42 with a young family and newly diagnosed. I guess I am trying to concentrate on the now and the things I enjoy doing, like taking my kids out or going for a walk in the park in the sunshine.
The drugs have meant that I can now type again with my right hand and I can wave. Which seems silly but it’s the small things that matter I think.
The big picture can wait.


#13

Thurinius, it is not silly at all what you are doing. You push yourself and when you hit your limit you plateau and then push on again. Always stay positive and focused but don’t let PD be your down fall, you will find a way to beat it.

Les


#14

Hi Drew, Shane, Thurinius

It’s tough at first when you are diagnosed at a younger age but over time you come to realise it’s not a death sentence, just something you have adjust your lifestyle to.

I was diagnosed a couple of years ago at 47 and I still work full time and do most of the things I want to do with the family. Everyone is different but for me, now that I have found the right medication, the main problem I have to manage is fatigue.

Take one day at a time for now and figure out what adjustments you need to make.

A local support group can be helpful - though be prepared also to see people who are in more advanced stages.

You will have good days and bad days but the good days will soon outnumber the bad ones.

Stay strong!

JF


#15

Hi Drew

Well I know you have been thown back from the news, I was told I hand PD at the age of 39 and yes I didn’t know how to feel or to take the news. But I have taken my own way with some advice of people on this forum too. I take each day as it comes and yes some are very good days and some are bad, I try and keep my self happy as I have notices when I stress I feel the pain more in my body and the feeling that I can’t take it any more. But only you can do this think of it as a new you look for ways to better your self and to make you feel that it’s ok to take time for your self. Once you do this you will find it easy and comfortable to talk to family and friends. If you already have not done so. I am not saying it’s easy as there will be days where you don’t want to get out of bed or do anything but you
Need to have that drive. People on this forum room are very kind and strong people who when every you need them will help you. I talk more on here as even now many of my family don’t understand PD and the other half well let’s not go there. But you keep your head up hi and take small steps to understand PD and you will see that you can do it. Good luck


#16

Myself, I’m keeping positive and only concentrating on what is effecting me presently. I excersice most days with either a physical run outdoors or at the gym, a basic workout on the weights plus another class and biking outdoors

I’ve finally seen the Parkinson Nurse who was really nice. I’ve been signed up to speech therapy and she’s going to find out where the young PD all meet up so I can joint them.

I’m seeing the PD specialist on Tuesday to see about the meds and if I’m able to get by without them at the mo!

Can I ask how many people suffer with there voice. Mine is going very quiet and it’s starting to bother me with people not hearing me - rather annoying as it’s been disappearing since March or at least that’s when i noticed it


#17

Hi remeň ber life goes on your friends and family will be there to help ,we’ve all been there


#18

You have taken the same approach to parky as me. I try to exercise very day and have set myself a goal of completing a 100km ultra run in August. Exercise takes away the nerve pain and stiffness.

As for the voice mine has also gone quiet which is not great for a teacher. I’ve had speach therapy and it was very helpful; it helped me regulate my tone and column.

Keep up the struggle


#19

Cruise has hit the nail on the head… good shot… try to laugh as much as possible, and don’t be afraid to talk about it


#20

I recorded my voice the other day to hear what people have been saying.

I was a little shocked to be truthful, I was amazed at how poor it was with both speed and volume with hoarseness really showing though.

Are well, at least I know.

Off for a DaTSCAN at the end of the month. Really hoping I finally get to the end of this as I’d been diagnosed by one doctor and the other I’ve seen says because of my age, he wants to double check questioning the others doctors diagnosis.