What if?

[KokoLu]

I am new here and I am from Croatia so my english is not very well. Please, yuo have an experiance. One month ago I felt tremor in my left hand, and paralely with this started insomnia, depression, pain in my legs. Now I got tremor in my both hands, it is not strong and no always here, for example, when I put the londreary or put dishes in washing mashine, after that tremor is here and yuo can see it. Also, when I spread my fingers, somethomes my litle finger moves left right. I went to neurologist and he said to me, you have 35 years, what's the posibility to have a Parkinson? And I am very afraid, I have two doughters, 4 and 5,5 years old, who will take care of them if I am sick? Please answer, sorry for language mistakes.

[shasha]

dear kokolu , you are very brave and it is good english that you have written - i had a similar experince though am much older than you - 65 - i think you must ask for a second opinion and dont take the answere that they think you are too young - if you have read alot of the blogs from peolple on this site - you will see that A LOT OF THEM WERE DIAGNOSED YOUNG - please feel free to contact me again

love from sharon

[KokoLu in reply to shasha]

Dear Sharon, do yuo have diagnosed PD? When? I am so affraid of desease that I cuoldn't normaly functioning.

[Moderator_1]

hello Koko

Welcome, and thankyou for writing. I can imagine this is a very frightening time for you wondering what is happening. There are many people on line here and elsewhere who will be happy to talk to you. I will post more when I have found some information for you.

Best wishes

[CPT_Tom]

Dear KokoLu

The best person in Croatia that I know who is involved with movement disorders is Maja Relja. She is fantastic and I would strongly suggest that you contact her if you can. I have copied below some information on her and I hope she will help. If you do make contact with her, by all means mention my name (Tom Isaacs) and send her my regards.

Let me know if you have no success and I will try my best to make contact with her for you. Wishing you every success.

Tom

Maja Relja:

Maja Relja MD, PhD is Professor of Neurology at the Medical School – University of Zagreb

(Croatia) and head of the Movement Disorders and Clinical Neuropharmacology Unit at the

University Hospital, a position she has held since 1996.

Born in Split, Croatia, she graduated in medicine from Medical Faculty of Zagreb and in

1980 achieved a Master of Biomedical Sciences and Doctorship of Sciences from the

University of Zagreb. Between 1980-81 she was a Research Fellow at NIMH (St Elizabeth's

Hospital, Washington DC, USA) and obtained the Board Specialization in Neurology in

1981. She was Visiting Professor, Department of Neurology, Medical School, Turku

University, Finland in 1995.

Professor Relja’s first research interest was peripheral dopaminergic (DA) receptors and

was the first to characterise peripheral DA receptors in the genitourinary system. Her main

research interests are in Parkinson's disease and related disorders and in the development

of novel clinical applications of botulinum toxin. She has considerable teaching experience

and lectures postgraduate courses in Neurology and Clinical Neuropharmacology. She has

organised international meetings for Movement Disorders.

In 2001 Professor Relja organized the Croatian Association for patients with Movement

Disorders which she has continued to chair. She is a member of American Academy of

Neurology, the Movement Disorder Society and other medical organisations.

[KokoLu in reply to CPT_Tom]

Dear Tom, thank yuo very much. I know that prof. Relja is the best doctor for that in Croatia and I reserved termin with her in hospital at february 29. So I hope that she will tell me somenthing more about my simptoms. Do you also have PD? And how do you know dr. Maja Relja?

[CPT_Tom in reply to KokoLu]

KokoLu

I know Maja through my work on the European Parkinson's Disease Association Board and I was involved in organising a young people with Parkinson's event in Zagreb. She is a very nice person - very warm and caring. If you are seeing her in February then you are in fantastic hands.

Yes, I have had PD for 16 years and was diagnosed at the age of 26.

Tom

[KokoLu in reply to CPT_Tom]

Tom, do you have any information, are there in Zagreb some yuong people with Parkinson's Desease? Dr. Relja is president of Associoation for people who have PD, but that association is not working well. I know that I don't have diagnose yet, and that is maybe too soon talk and red about all that things, but I can't help my self. May I ask yuo what was your first simptoms. And what they told you, why Parkinson in such early age?

[CPT_Tom in reply to KokoLu]

KokoLu - the best I can do is to put you in touch with Lizzie Graham who runs the EPDA and you can email her at [e-mail]. She will be able to tell you about the services on offer in Croatia and any organisations that exist. Hope this helps.

[KokoLu in reply to CPT_Tom]

Thank You very much!

[shasha]

yes i do have pd - but it is not the tremor sort but the kind which is worse - so my neurologist told me yesterday - it is the sort that mkes it nearly impossible to walk or do anything for myself much - even though i was only diagnosed in jan 2010 - i have become so much worse that it makes it so very hard for my wonderful kind and caring husband to help me -- i hope you get the help you need and i am sure that if you are put on to medication such as levadopa- then you will be able to cope very well -- please dont depair but go back to you health provider and get a proper diagnosis love sha xx

[KokoLu in reply to shasha]

My tremor is very tiny, somethimes hard to see it. Why your condition is became so bad at such short time?

[BigBen315]

The news of learning you have Parkinson's is devastating regardless of the severity of the symptoms. A natural reaction is fear, denial, anger, and hopefully acceptance down the road. etc...not necessarily in that order or as linear...but you will most likely experience many of these same feelings along your journey.

I have ypd and it started on my left side, I have three daughters. I reached a point where I finally accepted it because the symptoms became more pronounced and was open to meds. That has helped dramatically. I do not know what area you live in but I am sure there are doctors in your area or regionally that you might seek out. A doctor patient relationship is critical so that you can be candid with him/her so that you can learn about the disease and start managing it. PD is not a death sentence but rather a life sentence and the more you learn about the disease and managing it, the quicker you will be able to face the challenge and learn to live with it. Knowledge is power! Good luck.

[KokoLu in reply to BigBen315]

I live in Croatia, and our helth is in terrible shape. So I can't count on a good relationship between my doctor and me. Now I am more affraid that I have heavier form of PD, because my tremor is not very strong?

[Joealt in reply to KokoLu]

Sometimes people read too much into things when they get their advice from persons who are not doctors. It is best to talk to a qualified physician about your symptoms. Ask questions.

[Hidden]

When I first found out I had PD we went through a time of denial. I worried so much about the future that I lost time that I could have enjoyed. Take one day at a time. Don't let what might happen ruin your today.

I am on new medication and feel I got my life back...so to speak.

Yes, I move slow and at times I have different symptoms, but I can function without physical help.

I still need emotional help and strength from friends and family.

A doctor who listens is very important.

This blog is also very helpful.

[Joealt in reply to Hidden]

We all need each other.

[alanrob]

Hi kokoLu, i hope everything goes well with your consultation with maja relja in feb,we are all different in how our symptoms show or progress,i,v had pd since i was 43,almost 9 years now and the thing that has worsened more than anything is the tremor in my right side,you will get great advice and help on here because we are all in the same situation,tom isaacs is always worth listening to he is an inspiration,i met him at the world pd congress in glasgow last year and his work into finding a solution to this damn illness is fantastic CPT do brilliant work.

[Hidden]

KokoLu,

Hi i was diagnosed with PD on the 3rd of november this year , i was going through all the negative toughts that you are , however i find that this site is full of wonderfull and enligning people who have and are experiencing all of this together , you will never be alone

regards

Al

[KokoLu in reply to Hidden]

Yes, this site is great, wedon't have something similliar in Croatia...

[cowmom27]

KOKLU, I just recently found this site and think it is awesome that no matter where we are in the world or what stage we may be in with our PD you bave a world-wide network of people to ;'talk' to, who know and understand what you are feeling and going through. We may share a common thread but react differently to how it affects our lives.....to be able to share ourselves, ask questions, give advice, or just listen is a valuable gift. No matter what Kokolu, stay strong, don't let this disease rule you or take quality from your life.....remember we are here to support you, pray for you and if asked offer advice. God bless you and your family.

[KokoLu in reply to cowmom27]

Thank You very much for your support.