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A bit Parky after yesterday

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Digs43
A bit Parky after yesterday

Well, at the ripe old age of 43, with a wife of just 7 years marriage and a 5 year son...I was told yesterday by my neurologist that the Datscan confirmed his dx of Parkinsons. Not the best of days but one I'll never forget.

So far, no tears or sadness just a numb and surreal feeling. In many ways I felt relief to finally have confirmation of what I already knew plus relief that it wasn't a brain tumour or motor neurone...is there an unofficial league table of neurological disorders you'd least like?

Am I going to get a reality check with by hitting an emotional brick wall in a day or so. My symptoms are so far, mercifully, mild and the Neuro recommended no meds until Parky becomes more of a problem. So, today, I am the same person as I was yesterday...only different. I have an invisible badge that says Parky and, sadly, in time that badge will become more visible to others, it's just a question of when.

wpgchap

If you have to have a degenerative brain condition, PD is the one to have. Symptoms are controllable and a cure will occur within your life time. It is not as bad as it seems when you are first diagnosed. Hopefully yours will progress slowly. You will find people in this forum who have had the condition (I refuse to call it a "disease") for many years and are leading productive lives. I was dx'd 2 years ago and I have found much comfort in this forum. My condition has progressed slowly, if at all, and I attribute it to exercise and avoiding stressful situations. So, chin up, enjoy your family and life.

JofKL

I was diagnosed 5 years ago and suffer from tremors but thought I was doing well. Just overheard my brother saying he was sad when he saw me shaking. A hell of a reality check. My husband tried to be supportive but it's really hit hard.

MBG66

Hi Digs43 

I found myself in a similar situation just over a year ago. Age 49. Wife and 15 year old son, just started renovating a bungalow then BOOM Parky dx. 

I did have and still do get the odd meltdown as I expect most sufferers do. It is a life changing situation. You have to think how you are going to deal with the future. notice I said deal with the future not cope with it,I believe if you think positively it can be managed especially as we are younger. 

I have a very physical and stressful outdoor job but have managed to keep going. I am only planning one year ahead at a time.

Things do change, I started my medication immediately on advice from my neurologist to be honest I didn't know whether I was Arthur or bloody Martha for several weeks. I didn't get to see my Parkinson's nurse until February when she told me I should have had 6/8 weeks off work when I started the medication, like that was going to happen in my line of work, livestock needs feeding. 

Things have improved now I have a great team in my local area. (Kings Lynn, Norfolk)Occupational therapy workers. Physios. Parkinsons nurse and even my neurologist, when I get to see her. My advice is take all the help you can get. 

Think things through, enjoy your family, mine are a great support to me as are my friends. My wife has joined a group on Facebook for carers of people with Parkinson's she finds it very useful. 

The one one thing I find  is there doesn't seem to be a local group for younger people with Parkinson's the group sessions I have attended have had a few younger people there but mostly MS sufferers. 

I wish you all the best with the future it can be tough but not impossible 

cheers MBG. 

 

 

 

Moderation

Hi MBG,

Sorry to hear you've had trouble finding a support group for younger people in your area.

You may have already checked this, but our local support groups finder may be helpful. You can enter your postcode to search here: https://www.parkinsons.org.uk/information-and-support/local-groups.

Best wishes,

Edwina

Moderation Team

Kate

MBG, , 

I think you will find the younger persons with PD are still in work or have a busy family life, and  are too well to need a lot of support from fellow sufferers. Larger groups (branches, like Cromer or Norwich will have  a wider age range, . 

I was diagnosed 18 years ago, and I was told then about the high expectations in successful research outcomes, especially in PD : "you have a good chance they will find a cure"...Considering the minor advances (  incrrease in the use of dopamine agonists and COMT inhibitors ) it produced  a substaintial number of patients who had to come off the drugs  because of unacceptable side effects  We could do with a new drug that has the same impact as Ldopa had in the early sixties.

.The number of patients now offered surgical ttreatment could point to a quicker, more popular solution?? The costs have come down considerably

Meanwhile we should enjoy the good days we still have .and not sit at the computer t00 long!