Hubby (47) on Madopar, not diagnosed - yet

Living with Parkinson's Young Onset Parkinson's
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Hubby is 47 and we have 3 children aged 14, 11 and 9. He’s the MD of an asset management firm and has always worked in 24/7, global, high stress jobs for various financial institutions.

He fell from 3 steps up on a ladder in Nov19, he had passed out. Brain and CT scans followed and ruled out a tumour or stroke. He had been ignoring a tremor in his right hand/forearm for about 18months prior to this and was unable to open bottles/jars with his right hand because he couldn’t co-ordinate the action & was too weak.

Since that fall it’s been a case of monitoring symptoms. Dec20/Jan21 were very difficult, with symptoms really ramped up. Hubby has now been given Madopar, 100/25, 1 tablet 3x a day. It has made a huge difference, improving almost all his symptom; tremor, muscle tightening of his right hand, rigidity in his right big toe. ‘frozen’ shoulder, being unable to run over at night, feeling permanently off kilter, feeling as though he’s leaning when he sits and walks/stands. Unfortunately it hasn’t helped his handwriting which is still poor and illegible after a few word). BUT he has not yet received a formal diagnosis, thought he is seeing the consultant in a couple of weeks. We are hoping a formal diagnosis might come at this meeting.

We understand that this comes with implications for many areas of our lives. But this interim feels like a limbo…especially for the children. We don’t feel like we have anything to offer them by way of explanation. Nor others, not his employer (who is aware that something is going on health wise but not exactly what), nor friends who might notice changes.

We don’t live on the mainland UK and do not have access to much of what is available healthcare wise. We are also not eligible for any benefits financial or otherwise that government might provide. We do have life insurance though, which I understand will payout with a formal diagnosis.

Financially, we are lucky not to be in dire straits but the future is still very different from that which I certainly imagined.

I guess I am reaching out on here to find those who have also been diagnosed <50, the spouse of early onset PD patient, that will likely have relatively young children too.

Thank you for reading and apologies if my message is a tad rambling…it’s all a bit overwhelming. R

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Hi Again Rachel, Hindsight is a wonderful thing as I should have perhaps read this first but never mind i’m here now. I too have writing difficulties and given his job does he have to do a lot of writing or is it done on keyboard or does he have a secretary ? In any case his firm will need to know sooner or later especially if he gets a proper diagnosis which seems likely. As long as he is able to perform his job then his firm should keep him on especially if they are worth their salt and are prepared to stand by him even if it means giving him a different job to do. My firm tried to give me another job but having been a lorry driver and unable to write there wasn’t another job I could do and so I was comment edited by admin(Medically Retired).

Living where you do may be you should consider a move to the UK to an area close to one of the main hospitals Like Addenbrookes, Cambridge or Southmead, Bristol or John Radcliffe Oxford. Personally i’m in Devon and come under Bristol though I do have a Consultant whom I see at Royal Devon & Exeter. No need to apologise for rambling on, you are in a pickle which in this case i’m unable to offer much help but am hoping that my other post has explained more about the condition.

Les

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Hi Rachel your story struck a chord with me. I first knew I had Parkinson’s in 2007 when I was 48 years old. Your husband symptoms sound very very familiar.

I would like to suggest 1 or 2 tips which I have found helped. First I have a tendency to be overweight, but when I diet the symptoms are much more manageable. Second above all remain cheerful. 15 years later I still lead a very full life and enjoy all manner of activities. In the very early months I used to try and hide it because I didn’t want anyone to know that I had anything wrong with me, but it soon became obvious and I decided to shout it from the rooftops, bring it out into the open so that everyone knew.

For the last 3 or 4 years I have been taking stalevo 150/50 x 6 a day plus Sinimet 100 slow-release every night. My Parkinson’s nurse told me that 1000mg daily was the maximum dose I should be taking, nevertheless sometimes I would go slightly over.

A good friend of mine was lucky enough to receive the deep brain stimulation operation 18 years ago to very good effect, and for some time I’ve been trying to persuade my consultant to put me forward for it. Originally scheduled for the end of march 2020 as you can imagine it got cancelled with covid. In late November however they operated on me at the John Radcliffe hospital in Oxford and I was switched on a fortnight ago. The results are quite startling. To give you some idea my tremor is virtually non-existent and I have been able to cut down my medication by about 30%. Life feels terrific.

Perhaps your husband would like to to discuss this with his consultant.

Concerning your husband’s handwriting, I too experienced the same phenomenon, not only that but typing became difficult as well particularly on a touch screen or my mobile phone I double-entered nearly everything. My solution has been speech recognition software which has revolutionised communications for me. I have dictated this reply to you on my mobile phone very easily and with only minimal correction needed.

I hope this doesn’t sound like the ramblings of an idiot, it all comes from personal experience and the heart

Good luck and enjoy yourselves

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Hi Rachel, your story resonates with me too. Hubby was 47, high powered finance job, children 8 and 13, just moved to big house needing lots doing. Work in the garden highlighted a persistent tremor in two fingers and…the rest is history. Looking back now I can see onset had been much much earlier.
Having just celebrated his 70th, I can say we’ve had a good active life, travelled, enjoyed lots of hobbies. Symptoms are more bothersome now, but with good humour, organisation, family support and a positive outlook we can still do lots of things that give us joy.
What’s worked for us: get a good neuro consultant specialising in movement disorders. You’ll have a long relationship with them, so it’s worth getting that right. Also we’ve valued a good community Parkinsons Specialist nurse for help and advice on the small stuff in life. Look at the work situation. I did some extra study to go back to working full time and hubby went self employed so could work from home and adjust his hours to more to suit him. Make sure you are both as well informed as you can be, get involved in research and make full use of the excellent info available from Parkinson’s Uk. Also exercise, exercise and exercise some more, it’s just as important as the drugs for slowing progress of the disease and for mobility and wellbeing.
Our children grew up knowing about Parkinson’s and thankfully the progress has been slow so it’s not been a massive shock. Good luck x

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