Hello from a new member


#1
Hello, My husband has just been newly diagnosed with Parkinsons at the age of 36. At the moment he just has a slow arm (can't really type at a normal speed, arm hangs when he walks, and tiredness). We are a mixture of devastated, shocked, and trying to help each other.
He will have a neuropschological test in 2 weeks time and start on L-Dopa to see if he responds. If he does, it will be the final clincher for the diagnosis, though the neurologist has already told us that he has Parkinson's. (He's had MRIs and all kinds of other tests done to eliminate pretty much everything else) Whether he will stay on l-dopa after the test period i just don't know.

Our biggest challenge is work - my husband is just about to finish a PhD after which he planned to launch his career - and now he has Parkinsons. I have been on extended mummy break, and was just starting to look for a job. We have been advised to think very carefully about our career choices - build in as much flexibility as possible. No stressful jobs, and ones where we could possibly even take off long periods for me to either care for him or for him to recuperate. Part time work would be good. We also have a small and very energetic daughter, who will need time and care.

We do not live in the UK, but i am from the UK, and found the local groups, well frankly, cr*p so far. I hope you will allow me to join as a sort of expat... It is also plausible that we would move to the UK, as it would be good to have family and friends around once things start to progress with the Parkinson's.

I have started to tell some friends who live in the UK, and they were astonished that we were given a diagnosis of Parkinsons, a bit of a chat, a brochure that we were told was quite general and not all relevant for young onset parkinsons, handshake, and out on street in cold light of day. We didn't even make it home before breaking down and well, we were, and to some extent still are a bit of a mess. Actually, i'd already started crying in the doctor's office. So, big shiny bonus point to the NHS, who i hear from several people immediately give you some sort of counselling to deal with the shock of the diagnosis of a chronic illness. :smile: (have always been fan of NHS, i know its not perfect, but i've lived in 4 first world countries, and i still think its the best of the 4 i've tried!).

I hope i haven't written too much already... Thanks for reading.

#2
hmm - will post the above message also in "Newly diagnosed". We're double new - new to the forum and to Parkinson's...

#3
germanda Hello and a big welcome to the forum. It does not matter where you are from at all. All are welcome we have members from all over so don't feel you can't be here.

You and your husband have had a massive shock and it will take time for everything to sink in. Our members here are like one big happy family and people will be here to listen to your worries and concers, share they journies with you and help when and where they can.


We have a good few people who have been dx'ed at an early age and I have no doubt when they read your post will jump tou your aid.

Keep postingd let us know how you both are and give that baby of yours a cuddle from us.

Please don't be a stranger, there is always someone about at all times of the day and night to chat to.

Lots of love goes out to you and yours.

Radz xx

#4
Hi Germanda
Welcome to the forum, I was dx last year (age 47 ) so at 36 its really tough.
The first weeks were the worst for me, I had similar symptoms left hand/leg/tired
When I got over the initial shock and the meds started to kick in I felt relieved .
That may sound strange but after 2 years of going to the docs thats how it was for me
As Radzs says it’s a big shock, but there are lots of great people on the forum who can
help. As for work I panicked and felt I could not do anything especially in the cold
weather. Now 12mnth down the line I’m working quite hard (most days)
I am sure having a lovely little girl will help, my 10 yr old daughter and her mum are
are my driving force.

All the best Adrian

#5
hello germanda & welcome. Who on earth told you to think carefully about your career choices? pd does not preclude you from doing what you choose The l-dopa challenge is rather unusual these days.And counselling?. I wish! I wish you , your husband & daughter all the best

#6
Hi Germanda and welcome to the forum. I was dx 2 years ago and, although a lot older than your husband, can appreciate how you must have felt when given the news that he had PD. I'm sure you will find (as I have) that everyone will give you the support and any advice that you might ask for. There is usually someone around to chat to no matter what the time of day or night so please join in (the social club is where you will find most of the general chat).

Take care of each other and keep posting.

#7
hiya welcome to the forum:smile:im ali ihave been dx for 11 years in november,there is lovley people here to chat with ,and good surport as well:smile:hope to see u around the forum x:smile:

#8
dear germanda, please,please ignore my last post. I have not been feeling "quite myself" these past few days. My post was not kind & i have nothing but kind wishes for you, your husband & your little girl. Of course a dx of pd at such a young age will come as a shock and indeed the condition does place some restrictions on what can & can't be done. But with your support, I have no doubt that your husband will be able to achieve to the best of his abilities. Please keep posting, I hope my snappy mood has not discouraged you. I sincerely appologise & wish you all the best

#9
Hi, My husband wad diagnosed early in his life, like yours.
Tom was 34, but had PD at the age of 30 !! Because he was so young, they called it extra paramedal disorder, if my memory serves me well!! We went on to have 3 beautiful children and we got on with our lives as normally as we could! Do not let this illness overtake your lives, let your lives overtake PD. You will gain the strength to cope and you will find strategies to deal with situations. Have fun, lead as normal lives as you can and do NOT give up!! Be positive, find out as much as you can from the vast amounts of info available, and you will cope. Tom is now in his 35th year of the illness and if you wish to know more about how we have managed, please feel free to contact me, I will be only to happy to help if I can. Regards Michele xx

#10
Hi Medabet!

I too am entering my 35th year with PD......im 43 in November. Im lucky that ive grown up with PD and it is just a part of everyday life for me. I have always managed to work full time even though I had to take two weeks holiday off for my DBS surgery (4 weeks off work in total ). There is always hope!

#11
Welcome Germanda

I have recently been diagnosed at 29, I work full-time in a college and have a wife and 8 month old daughter.

I have lots of unanswerable questions in my head most of the day about work and the future, and PD is always in my thoughts every day.

My wife has been so understanding and supportive as always. We cried and talked it out many times (with more to come I am sure), and its been a long year so far. The future will hopefully contain my wife, daughter and career - PD is just another part of it. Sure it will 'slow me down' but that won't stop me enjoying a full life with my nearest and dearest.

My career is the only thing worrying me (currently) as that is the one thing that may be 'affected' in the future. My family, the illness and the future are all in MY hands and will develop and grow regardless of any anything.

I wish the best for your husband and family.

This forum has been very helpful indeed (see my other posts)!It is a great source of support and information regards PD and living with it day to day.

Best

David :smile:

#12
Hello Germanda,
It's a shock, isn't it. I was diagnosed recently. I have been alternating between feeling OK, and being scared of the future. I have been restricting myself with some activities at work...and grieving in anticipation. Well, it just so happened this week that there was no one else available to do some particular things at work, than me. So I reluctantly did them, and I found to my delight that I still could, and I even did them well! This small boost in combination with the kind words, experience and encouragement from others on this forum have made me realise that it is not the end of my lifestyle as I know it...I hope to be doing things I want to 20 or 30 years from now, with some adjustments.

With a little time, I hope you and your husband also have some successes, and find that all your combined hard work in obtaining the phd & being a mum has been well invested. I wish you all the best with the medication trial. It sounds like it has been a great shock, but with a little time, things can start to seem more manageable.

My best wishes to you both, Frock

#13
Dear all, Thank you so much for all your replies. Each one of them has helped in its own way. We are already feeling much stronger and "normal" (for want of a better word), and your comments together with the information on this website have been a large influence on that.
Now with a tiny bit of distance (5 whole days!) between the diagnosis and writing this, i am annoyed about how negative the neurologist was about career possibilities. Plenty of great examples of people on this forum going strong after many many years, which is the expected prognosis in this day and age, and she did paint an overly bleak picture. I think we partly overly focussed on it as it is important to us, but i think that's normal for people of our age. There will be some restrictions, but not anywhere near what our original impression was.

Thanks again to all of you for taking the time to write encouragement to a stranger. This site is a great source of information and encouragement.

#14
Hello, I am a new member on here. I am a Wife, Mum, Grandmother, and great grandmother. I ws diagnosed six years ago, it wasnt really a shock, because I looked after my mum for three years with the same condition. Was told by the neurologist that parkinsons is a gene. Would be nice to make some new friends on here if anyone is interested in having a chat. Best wishes Sylv

#15
Hi Germanda and welcome. I have only just read through this thread and I have to say I’m inspired by some of the replies. I’m ashamed to say that I lapsed into self-pity on another thread, but these stories have jogged me out of that. Although everyone probably feels vulnerable from time to time, it IS important to think positively as often as possible and focus on the good things in your lives. It’s also important to stay physically active.

I wish you, your husband and your little girl all the very best and hope you will continue to post.

Welcome Sylv.

#16
Hi Sylv and a very warm welcome to the forum.

I like you am a Wife, Mum and Grandmother (no Great Grndchildren yet though) and I am also a daughter as my 87 year old Mother lives with us and she still treats me like a child! I was dx 2 years ago and joined the forum to learn more about PD and how it was going to affect my life. I have found endless support and encouragement from everyone here as I'm sure you will. There is usually someone around no matter what time it is for you have a chat and get to know others.

Pop into the social pages, there are word games and a cafe where you can drop in and sample one of Ali's breakfasts. Keep posting and see you around the forum

#17
Germanda and Sylv welcome,

it is a shock to all when diagnosed, I was about 30 am now 50 and feel great.
the secret is to get the meds sorted to YOUR staisfaction. crying, feeling lost, low, angry, alone: ALL NORMAL. do not be too harsh on yourself, you have just had a life-changing diagnosis. it is not life-ending, it just feels like that.

this forum boasts some of the kindest, bluntest, ballsy people i have ever had the honour to communicate with. we will always listen and can empathise.

all the best.

mts.t.

#18
Dear all,
A big thank you also from me (the husband and dad newly diagnosed with PD). Your replies have been very encouraging and helpful! After the initial shock we have started to try to understand what it all means to us and your posts helped us to gain some perspective. I am soon going to have to start applying for jobs and I am therefore very concernced about what it all means for my future career. I would be very interested to hear how some of you who have been diagnosed early in their lives and then have gone on to pursue professional careers have managed. Please drop me a private message if you are ok with me giving you a call. If you are more comfortable posting a reply I would of course appreciate that, too.