Possible early onset diagnosis


#1

Hi I’ve recently (7 months ago ) been told by a neurologist that I probably have Parkinson’s. I have had a dat scan and go for my results 1/3/19 - this has come as a total shock as my arm was only occasionally shakes, aches and very occasionally won’t do what I want it to do!
I am devastated to say the least and struggling to get my head round it all as I have just turned forty, have a young family and am the main wage earner. I keep searching for positive stories ( I know there’s no cure and it gradually get worse ) but can anyone give me any positive stories, will I still be able to work for long? will I see my kids grow up etc? I’ve read that early onset tends to progress slower than late is this correct ? Also should I start meds when I see the consultant or is it best to prolong ? Any suggestions of things to cover with the consultant would be greatly appreciated too thank you.


#2

Hi @Madwife5676,

I’m really sorry to hear that you have been “probably” diagnosed with Parkinson’s.

I can’t imagine how upset and confused you must be feeling right now, but at least rest assured that you have come to the right place. In the forum you will find people who have been through what you are going through and can hopefully share their experience with you.

While you wait to hear from others, you may find it helpful to check out the newly diagnosed section of our website. It offers advice to cope with your diagnosis and on what to do next, including how you may want to prepare for your doctor or specialist nurse’s appointment, as well as answers to questions you may be asking yourself. It’s a great place to start, and after that you can take it at your own pace. Some people prefer to have lots of information and others prefer to take it easy for a while.

Please do let us know how you are getting on.

Best wishes to you and your family,
Mara (Moderation Team)


#3

I was diagnosed 5 years ago and was devastated, but I worked up until six months ago, my choice to retire. I still foster and look after grandchildren. It’s not all doom and gloom but there are bad days, with stiffness and internal shaiking. I try to accept what I can do and be positive. Keep going. X


#4

Hi Madwife5676. I’m recently diagnosed too and equally devastated. I’m 55 and the main earner.
I’ve just started an exercise program PD warrior, It’s my way of fighting back and it works for me.


#5

Thanks for the replies, if anyone with early onset disease can offer any advice on when to start medication, and what medication is thought best for early onset (levodopa or the other ones?) my main concern is developing Alzheimer’s early … I guess I’m just looking for stories from people who’ve been diagnosed a while with little deterioration …?


#6

I was diagnosed in September with ‘Mild Parkinson’s’. At that time I was finding it difficult to walk. Walking felt unnatural and I had to concentrate. Difficulty walking was my most overriding symptom. However, when I was diagnosed the neurologist said “You have mild Parkinson’s Disease but it can be controlled”. Sure enough, soon after commencing treatment (Madopar and Selegelin) most symptoms started to diminish and my ability to walk without having to concentrate was restored. I now go for walks daily and so get plenty of fresh air.


#7

Hi @Madwife5676

Sorry to hear about your probable diagnosis. I remember the same thoughts racing through my head when I first heard the news from my neurologist.

I write a blog that you might find helpful - it says it like it is but I think overall is a positive story…

Stay positive - a few years in and still in my forties, I can still do most of the things I want to do in life, just with a few adjustments.

JF


#8

Hi @Madwife5676

I am in exactly the same position as you and was diagnosed yesterday, in total shock as I am only 45 and thought the symptoms were down to stress.

Waiting for letter to come through from consultant saying what drugs I will be on, but he is starting me off on a different type due to my age.

He was speaking that life will be fine and almost normal, but reading the posts on here it doesn’t feel so great at the moment.

I too would like to hear some positive stories


#9

I’ve been told (after the diagnosis i.e. Dat scan) to start with the medication immediately, and this I regret a lot. I probably had PD for years, so a few days/weeks makes no difference, at least until one comes out of the first wave of shock…

Second mistake: I started with two medications at the same time. Why a mistake? Because I don’t know which one is causing what (both positive effects as well as side effects). Taking one first and another one after a few months would have helped me. Now I have to live with this uncertainty…

Last but not least (and this is my personal humble opinion, without any intention to criticise the work and knowledge of physicians): I keep reading here that young onset patients start immediately with Madopar. This is one of the theories or possibilities, but there are also many others; the one I (and my neurologist) follows is: stay away from Madopar as long as possible, try other substitutes (rasagiline, amantadine…), excercise, mobilise all other forces to compensate the “damage”, and learn to accept that some things simply don’t work any longer and that some symptoms are simply there, rather that extinguishing them with tons of medicines at the very early stage of PD. We are young, we have a long way ahead of us…

As a patient, everybody has a right to challenge the therapy, ask for alternatives, says no. I know that many physicians might not like this approach, but it is legitimate…


#10

Hi @SamA

In my first year after diagnosis I went through my fair share of ups and dows. But here are 7 reasons I’m now positive:

  1. Young onset PD typically progrsses very slowly. Most people with YOPD lead a decent life for several decades.

  2. With the right medication, the motor symptoms of PD can virtually disappear - the main challenge is fatigue.

  3. I still work almost full time (4.5 days per week) in a demanding job (10 hrs+ per day, lots of travel).

  4. I still go on nice holidays, enjoy activities with my daughter, pursue my hobbies and even still run a little (I can’t run marathons any more but I don’t want to anyway).

  5. There is a huge amount of money going into reaserch which could result in a cure in our lifetimes.

  6. I’ve got to know several people locally with PD and we are very supportive of each other.

  7. Although some days are pretty tough to get through, having PD has sharpened my focus on what matters in life. With a supportive family, I can honestly say I’m happier now than I’ve ever been.

You will likely have to make some adjustments but you can still live a wonderful life for many years to come…

Best wishes
JF


#11

Hi JF

Can I just say how good it felt to read something so positive. I was diagnosed a few months ago at the age of 50 and have been struggling to find some solid ground, so to hear from somebody like you is lovely and gives me a real boost.
Thank you.
B


#12

Thanks everyone for the replies
JF yr reply is exactly what I’m looking for
Thank you


#13

Thank you, it makes such a change to hear something positive.