Newly Diagnosed


#1
I am a 36 year old man who was diagnosed with PD 1 month ago. I am worried about how quickly my symptoms will progress. I went to a Young sufferers group last night but I was still the youngest by around 20 years. They were all very welcoming and supportive but I felt so very young. Are there any other PD sufferers out there around my age?
I am married with 3 boys and I am worried about the effect my PD will have on my family and how quickly it will progress.
So far my symptoms are loss of feeling and movement down my right arm and more recently some jerking and twitching down my left side.

#2
hiya 37cricket,welcome to puk forum,im ali been dx for 11 half years im 43 years old.i can realate to you,as im young on set also,when i was dx the nearest young pd group was hour drive away ,so i went to the older group just down the road.i was welcomed with open arms,i felt awkard first cus i was only 31 ,but i then thought wot am i thinkin of,age dunna mater at all.there is 19 years between me mom and dad,and i thought nothin of that,and these people were so nice to me,so i did wot i could i started doin fundraisin for erm,organizin days out for erm etc,and its blossomed from there.with symtoms parkinsons is nown as a progressive disease,but a slow one,and i asure you 37 cricket please dont worry,you have just been dx,ino it a shock etc,and i symerthize with that ,i really do,x but you have lot time to live your life with your family,it depends on the age of your boys and how you bring them up,as if you are goin to sit erm down and expalin,there s books that can help them ,for children,very helpful.these will would able to be purchassed from the pd group,or if you ring the helpline for puk,number top of this page,they will be able to tell you were else to purchase them from.im guess you have aneuroligist if you been dx,have you been put on any meds yet,and if so wot are they,im on sinemet and mirpexon,for my pd.also a idea ,is you say is there anyone out there your age,if you are able to put wot county you live in,community members here on the forum will be able to contact you by pm,or on the thread and then be able to make some friends may be closer to home.i live in shropshire:smile:there is alot of surport on here and nice people to meet,hope to see you around x:smile:

#3
Hi ali j

Thanks for your response. I live in the North Hampshire area. Hopefully there will be someone out there closer to my age more locally to me.

#4
Hi 37cricket, I'm sorry you have had this diagnosis so young. But try and stay positive. I'm a lot older than you but I'm b...ered if it's going to get me down! I know that's easier said than done, but it's no use giving in to this crappy thing. I notice you have three children, don't know their ages, but I'm sure they keep you busy! and that's a great thing. I haven't been on this forum for long, but there seem to be a lot of good people on here, and when you post something, it seems that someone will almost certainly have some kind of answer for you. So chin up and feel free to chat anytime.

#5
Hello 37cricket,

Welcome to the forum where you will find many people of different ages, perhaps some will also come from your area who may not be a member of a group but also have PD.
My husband was diagnosed at 39 yrs and is now 68 almost 69 so we have lived with it for a very long time. My husband managed to work until he was 46 and we had all the worries of how we would manage but we have always been careful with our money and with the help of benefits we have managed quite well.
We had a article in our local paper about us and asked if anyone would like to get in touch if they or a relative had pd and from that we made several friends who we would have pub lunches with. After a few years we started a branch and although I have now retired the branch has about 170 members which just goes to show how many people are out there with this condition. We have made very many friends through the years and have had some fun as well as promoting PDUK.
I hope someone will get in touch with you as it helps to be able to share and compare life with pd.
best wishes
vivian

#6
Hi 37cricket,
I had symptoms for 4 years before being diagnosed age 37 and am now 40. No-one can predict how fast your symptoms will change. Mine seemed gradual but progressive until I got onto a dose of meds that suited me and I have been well, stable and regained much functioning in my left side, for the last 18 months i have felt much more confident. Medication can be great and you also need to take control as much as you can, keep active and fit, and try all sorts of alternative therapies to help your symptoms. I know it's hard at our age. It makes you look at life in a way you never have before. But it is possible to live with this and keep on with your life as normal as possible, I believe. If you have specific queries people on here are very good. What you are experiencing is individual to you but I can only say, there is a therapy out there for every symptom, and you don't think about it all the time forever. It is life changing though, so talk to people, here or face to face. Be nice to hear more from you. Early days are hard and adjustment is an ongoing process.

#7
Hi there Cricket, i was diagnosed at 32 at Dr. Weisers Neurology clinic down here at Swansea,i know exactly where u are coming from mate, i went thru the exact same problem as you and still going through it lol and im now 51. Yep almost 20 years have gone by, having this nightmare they call parkinsons grrrr and i hate to tell you my friend but its a hard task ahead. THere is alot of helpful people in these pd communiies, clinics, etc etc but the age gap i found in my area, quite frankly frightening, theres not many who talk the same speak lol the same decade dialogue language as myself, but i will say this, i didnt go to my area pd society , main reason was there was nobody my age using the facilities, and to meet and talk to the older generation and be told and see what i had to go through, well it scared the pants off me. im still alive n kicking tho lol sooooooo anytime u wud like a chat about anything at all, im hear ok mate, i also have 3 children , 2 boys 21 & 20 and an older daughter 24
be safe, contact me anytime
the shakey parkinsonian !!

#8
btw cricket how old are your boys ??

#9
Hi Cricket 37, i am 29 years old and i got diagnosed last week!!! I am in complete shock and cannot believe it. My mum is 59 and she was diagnosed 2 years ago and we all though that was bad and now me, my whole family is in devastation.
I have a 12 year old son and cannot bring myself to tell him.

regards

#10
Hi, I have too have only recently been DX'd with PD - I am a little older at 45. I have gone along to my local working age group once and my second meeting is tonight (Chatham) - like this forum, its just good to know and talk with others with PD. Phil B

#11
Hello Philib,

Welcome to the forum and the parky family where you will make many friends who will help you through this new path in life, it is not easy and has many ups and down's but it is surprising how you manage.
My husband has had it for 30 years now he was diagnosed aged 39 but he probably had it for several years before that. I was already disabled with a chronic back condition after an injury whilst working at the hospital.
We were very worried how we would manage but we have, until the last couple of years when my husband had to go into a nursing home, which is heart breaking after all these years but it had to be I just couldn't manage anymore.
I wish you well and look forward to seeing your post in the future
best wishes vivian

#12
hi i was dx 2 years ago at 41...even now iv still not accepted it deep down...just try to live each each day as it comes and try not worry bout the future (i know that may be hard)..but thats how im trying to get through it...:grin:

#13
hi 37 cricket
I am new to the forum I was dx nearly 5yrs ago aged 48yrs but boy I lived and partied like a 30yrs old as my girls have told me I have this theory life is for living and there is some poor B***er (excuse my language) out there worse than me. I like most people on here have told you none of us know how this disease will progress in any one of us.It is hard for you being young but as you can see from the posts that it could be 20yrs more or less before you have major problems. I have worked and was intending to work as long as i can, I have had my up's and down's with medication and as my consultant said to me last week he commented how pleased he was that i had stayed working for the last 4 1/2 years he said most patients retire after 1-2 years but as I was still young (the charmer) he really did say young I did not imaging it, he has tried to do his best to keep me active. over the years as symptoms pop up or deteriorate he has increased and changed my meds but being the b***er I am I have had some pretty bad side effects:confused:, I did warn him in the begining that i would not be easy and i am not and to be fair he had to cope with a year were i had breast cancer which was diagnosed 1 month after the Parkinson's ( complicated b***er or what, please again excuse my language) so now as from last week my option is Brain surgery nothing else left in the cupboard, due to me being a bad B***er there is no more pills left for me to try I take 41 tabs a day just been to surgery to have more added to help, as i am having rem sleep disturbance and i am bashing my husband (he still thinks i am not asleep HEE he could be right TEE HEE) but is this going to get me down, no it is not I have 2 girls 28yrs and 30yrs and from the start i have told them everything so when things progress they are prepared , you i am afraid will have to judge when to tell the children depending on there age and maturity, its not a death sentence and you need to make the most of your life and your life with the children. You have not mentioned your wife and how she feels, read all you can get involved with your local group and chat on here we are all here for you and i am sure I say this for all with Parkinson's then when you have exhausted your self and looked every thing up asked the questions you will then sit back and life your life disease and all take every day as it comes deal with progression and when you do things wrong do as i do tell them its not your fault you have a condition you know.i tell my boss daily when he tries to blame me for things TEE HEE, I could get away with murder because i have a condition you know. now if i have cheered you up or depressed you i will go because i could rattle on for ever if you do not comment then i know you think that I am mad the disease has taken over EEEEEEEH.

#14
Hi Saintly 7
Read my post to 37 Cricket I will say the same I know you have had this pissy problem for 2 years but i am sad that you are not coping do you need a friend because you could have one mad woman as a friend or hundreds of them we are the Parky society YAA and we will drive you mad if you want OH no I mean we can support you . Seriously this disease can be hard to cope with and if you are up for it go out there and meet other old and young they all have a story to tell and one will be your twin who every word they speak you will say to your self that is me I do that and it will go on and on then you will realise you are not alone if you want friends they are here if you don't please please see your GP or Practice nurse or Parkinson's nurse you may be depressed or becoming depressed. Have you a family Partner can you talk to them ??. i think you will benefit from this forum if you let it and you have made the first step well done. i will go now as some one is bound to say get her off HEE HEE.

#15
hu Cornette
so sorry that you have joined the club it must be devistating for your mum she must be worried for you i am 53yrs old and have 2 daughters one is 28yrs old she has coeliacs disease and has had a bit of a rough time but is doing well and a 29yr old who about the time I was diagnosed in 2008 had been suffering with a viral labrinthitis which lasted 18 months ! . I at the time did not help as i was diagnosed with Parky and 1 month later breast cancer:frowning: but we fought on. My girl then went to work as an occupational therapist but over the last 5 years she has be troubled with inbalance and now has had an episode for 4 months resulting in ? loosing her job she is under a ear/nose and throat Dr I have asked for a neurology opinion, she had a brain scan 5yrs ago showing a spot of inflammation which they thought was innocent but a work friend of mine (I am a nurse by the way ) suddenly said has she got Parkinson's like you i shuddered and then felt sick I am now worried is this her problem ? I hope they are wrong but my daughter has said if it is she will become a cocktail waitress as she should be good at that if she has Parkinsion's so as you can you can imagine I laughed I cried then i thought if she can take this in so can I, so we will wait for the out come. Have you talked to your mum? does she admit to you how she feels about this ? does she use this forum ? if not get her on it girl tell her the mad women is prepared to speak to her oh no if you think that may put her off tell her there is some normal people if you can call Parkinson's suffers normal ( of course you can silly me). where do you live may be this site can get you involved with a local young person's group or a group you and mum can go together. There is so much out there for you and your mum so go and get it and enjoy life stick this sh***y disease in a corner and don't let it run your life( sorry for the rude comment).

#16
I was diagnosed two weeks ago. I can't get my head around this; I'm incredulous, panicked and bereft. All those plans of skiing into my seventies, my retirement tennis career,my business but most of all my family; oh my young girls. I am forty and surly I shouldn't have this for another 20 years!!! Logans run!

I'm going to the gym as before although I am having to do more functional training on my core and scapula thanks to the second side effects of the PD, my frozen shoulder. The main symptom though is tremor in the left hand. A hard gym session makes the tremor worse but I feel a bucket load better. I still play tennis and when I do I also feel so much better. Generally I'm fine unless I am talking about it, or at the doctors when the harsh reality strikes and they start reading the list of side effects on the Rasagiline. Or watching MJ Fox videos, that guy is a legend but I don't think I could stand it, plus I'd be poor, juggling PD with trying to work... For the first time in my life I am staring into the abyss -what's the plan now CB?

Well its certainly altered my outlook on life. I used to think the NHS was too big and sucked money out of education, well actually I still do, just less so and now here I am taking their pills because my insurance lapsed. What a hypocrite!

Anyway I need to sort this out! How do you build a strategy though when there is no forecast. I am very surprised that their is not more information on rates of deterioration. It might be unique to each person but surly a population study would give some indicators. I find it impossible to believe there are zero correlations. I'm 40 now will I have a tremor for 20 years or will I be wearing nappies in two years time ? Do 10% show only minor symptoms for 5 yrs, is it 20% 50%, what difference does you age make to the rate of decline ? If there is nothing I think we need to start a website tracking this stuff - does any one know a good statistician .

#17
I was diagnosed at 42, and told my boys within a week, then 3 and 7. I'm still around from day to day, I still spend time with them, we still have fun, but they understand when I have a bad day. Now 8 and 12, they both like to help me if they can, and we know that our time together is precious. Kids can cope with the truth, just be over the initial shock before you tell them.

Truth to tell, PD is boring, you'll soon find better things to talk about.