Early Onset Thread


#1

If you are, or were diagnosed before the age of 40- make yourself known! :) 


#2

 


I'm 45 soon 46 i was thought of by the Neuro as young or early onset, I do not fit the definition of your question but i do fit the definition of the title, a while ago someone else was seeking  specifically older people, who fitted their definition i cant remember their exact wording??,  most who replied just pointed out that we all have Parkinsons. i didn't feel qualified to reply.

 


#3

Hey! Thanks. 

Yes indeed, early onset can be below 40 or 50 or 60 depending on who you're talking to. I totally agree that we all go through similar experiences, I certainly wasn't trying to exclude anyone. As I'm 39, and only about to start a family, I guess (and I should have said), I'd be interested to hear from others of any family bearing age who have first hand experience of the trials ahead. 

Cheers for the prompt reply!


#4

Hi HughesNewbie

My hubby was diagnosed at 43 after a 2 year journey. We have a daughter and the diagnosis was shocking but not really a shock as my mum had a friend that had PD from 39 so I recognised the early symptoms. I do understand your train of thought as I think the challenges that face people with young onset may be different than those experienced by older people with PD. Older PWP seem to suffer with greater levels of ill health and mobility, probably due to other underlying ill health whereas young onset PWP struggle to maintain their working life and the demands that having a young family place on a person with a chronic illness, for us the most worrying aspect is financial concerns, my hubby theoretically has over 20 years working life left and we still have a mortgage and we are obviously very concerned about our long term financial position, given that the government seems focused on reducing the support for disabled people. On a positive note we can only say that so far things haven't been anywhere as bad as we thought and I would advise on living one day at a time as looking too far ahead is pointless as none of us know what is around the corner. My hubby doesn't do forums and when he i told him about your situation he said "oh, how lovely having a new baby, that will cheer him up" our daughter is a joy to us and I am sure your child will bring you much joy.

klou


#5

Klou,

Thanks for such a lovely reply. My regards to your husband. The weirdest thing I find about the disease is that it's so changeable. There are many times throughout the day when I think 'I'm fine, maybe I don't have it!', then my leg or arm prevents me from doing a basic activity or I stagger around and I'm back to the same negative train of thought. 

I haven't told anyone yet, certainly not my employers, so I have a lot of thinking to do about my financial status and how long I can 'get away' with it. Equally, i think I have to tell my car insurance company and haven't- it's those little things. I can still run so announcing myself as having a 'special need or disability' is just weird. 

What age is your husband now, and how have symptoms progressed?

What are his main problem areas? Mine is balance/dizziness. 

Anyway- thanks again. I might bother you again at some point in the future. 

H. 


#6

when I was diagnosed at age 39 I had a child aged 18 months and was planning another. I have just turned 50.

EF


#7

 

telling you car insurance wont put the premium up, but not telling them might make it invalid when you need the insurance in the event of an accident. you are also required too inform the dvla.


#8

Hi HughesNewbie

My hubby was 45 yesterday, he was diagnosed in Feb last year and his main symptom has always been neck, arm and shoulder pain, he has had this symptom for over 5 years. 2 years ago we noticed a slight rest tremor in his arm and this has developed, sometimes more noticeable than others, especially when he is stressed. He had to inform his employer and the DVLA, as driving is part of his duties, the outcome is that he has a 3 year licence and his employer is most supportive but Parkinsons does fall within the scope of the DDA so employers have a duty to support and not discriminate. His insurance doesn't cost anymore. 

Over the last year his motor symptoms haven't changed really but he has been introduced to Sinemet and this does help with symptoms. Do you have any meds? this should help with balance etc. My OH suffers mainly with fatigue, he feels very tired but doesn't sleep at all well, as you have said this changes greatly from day to day and some days he is fine and without warning he can feel terrible the next day. We are trying to use diet and vitamins to help I.e limited diary products and reduced protein, will keep you posted.

My hubby has recently been given a Parkinsons nurse (we had to ask the GP) and he has seen her once and she stressed how important it was to not over think things or worry about the future as no one person has the same outcome and stress does lead to a worsening state. She told us that she has clients who have had this condition and they have kept positive, kept active with exercise and they are still doing most things that they did when diagnosed. 

When he was initially diagnosed we were so worried and he does have bad days but he has a lot of good ones and we are gradually getting used to this and life goes on much as it did before he got an official diagnosis. He still plays golf and our long term friends have been very supportive.

regards 

klou