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