Husband/father (47) just diagnosed

We are a family of 5, with 3 children aged 14, 11 and 9. Hubby has recently been given Madopar 100/25 after 18 months of monitoring symptoms. He has yet to be formally diagnosed but has an appointment in a couple of weeks with the consultant at which point we’re hopeful that it becomes official, so to speak.

Of all the horrors the symptoms might have been we are thankful that it looks to be PD.

My stepfather had PD for the last 15 years of his life (he died at 75 in Mar20) so I am not unfamiliar with is as a condition.

I have signed onto the forum to gain a greater understanding of the condition and to find guidance for myself and my children and as a sounding board for when it’s all a bit aarrgghh.

Thank you

Hi and welcome to the world of Parkinsons Rachel, it isn’t as bad as it sounds, i’ve had it since 2011 so feel qualified to give you some help. I am currently taking Madopar 200/50, 4 times a day and it works for me. As you will learn on here not everyone is the same so what works for one doesn’t necessarily work for another. The most important thing is for your husband NOT to change what he is doing because he has it. Do your thing every day what you normally do, if he does get a positive diagnosis as and when things change he will know. Like not being able to do certain things but hopefully it will take a long time before this happens given his age.

What I tell newly diagnosed people is to adopt a positive attitude, you have Parkinsons, it doesn’t have you. If someone can see you need a hand don’t be proud and refuse, always accept people’s kindness. Be upbeat and have a laugh about the condition especially if he has a tremor, I remember I used to wobble like a jelly prior to diagnosis !! It is not a disease to be ashamed of, let people know you have it and apply for a Blue Badge from your County Council Office. Assuming your husband gets a positive diagnosis it will be useful to know where his nearest Parkinsons Nurse is located, this information you should get from your GP Surgery, they are very useful people and can help you with any concerns you may have. Rachel, as your husbands carer you are in the best position to notice any changes in your husbands behaviour possibly before he does !! With your children the same applies, don’t treat Dad any differently assuming he gets diagnosed be yourselves you they will also know when he behaves differently. Before you go to see the Consultant it will be useful if you write down anything you may want to ask, anything that is playing on your mind.

With me I have two tremors, Parkinsons and Dystonic(greedy I know LOL), the Parkinsons is controlled by a Deep Brain Stimulator(DBS) which keeps the brain producing dopamine. Also I have memory lapse, I have the occasional fall, a resting tremor in my legs and over the past year have started dribbling(yes, i’ve played football in my time !!). I have been known to snap at my wife but given that i’m 68 this would come under the heading of Grumpy Old so and so !!

In the meantime if their’s anything you want to ask I will do my best but hopefully by then someone else will be on here to offer advice or the benefit of their experience. When he has been for his appointment come back on here and let me know how you got on and then I can see which path you need to take. Have yourselves a good weekend and hope that my info helps. Take care and stay safe.

Les