New to Pd

Hello I have joined this forum as my husband was diagnosed with Parkinson’s last week. He has been prescribed Madopor 50mg once a day for the first week then to increase by one table each week until he is on 4 tabs a day. He drives for a living and I’m worried after reading some of the side effects like falling asleep without warning and freezing episodes. Has anyone had side effects like this?

Hi KMac1 welcome to the forum though sorry for the reason that led you here. How is your husband coping with his recent diagnosis?

I have been taking Madopar for a year and a half and though I suffer with fatigue, I experienced this before starting my prescription so don’t put this down to the meds. I guess as the meds May affect each individual in different ways, not all if any side effect may be experienced.

Hi KMac, I was diagnosed with PD 8 years ago. Yes falling asleep and freezing are common symptoms of PD and the medications I’m afraid. Has your husband informed his manager about this as they need to know. I used to be a train driver and had to tell my company straight away they helped me a lot even though in the end I had to take medical retirement. It was tough but it was my decision as my reactions were too slow & the thought of causing an accident were unthinkable. I found it hard to take in that I had PD but told all those close to me who have been a great support which is so important. I have recently undergone DBS which has given me a much better quality of life.

Hi Joanie67 Thank you for your kind reply. My husband has taken the news quiet well. To be honest it’s me who’s more scared. I have been reading all sorts about the medication but as you say it effect people differently. Hopefully once we get used to this news things will fall into place.

KMac1 I can imagine it to be quite daunting for you too. There’s a lot of information you can read on this site and of course, if you need to ask anything, the lovely members here are always willing to help.

Did the consultant inform your husband about being referred to a PD Nurse?

It’s good that your husband has taken the news so well. It took me a while to get my head around the news and then ensued a rollercoaster ride of emotions. I found this forum invaluable so stay close if you can and remember you are not alone.

Hi @KMac1,

A warm welcome to the forum.

You’ve received a lot of great advice from other members so far which is lovely to see. I thought you’d like to know that we have a ‘newly diagnosed’ section on our website which is a good place to start for information and support for both you and your husband.

You can also contact our helpline service on 0808 800 0303 to speak to a Parkinson’s specialist and they can also arrange for a Parkinson’s nurse to call you back within 24 hours. I hope you find this information useful and do continue to engage on the forum for more help and support.

Best wishes,

Hi joanie67 yes the consultant did say he would put us down for a PD nurse but we’ve not heard from anyone yet but I suppose it’s a bit too soon. I’m really grateful for this site and the replies that I’ve had are reassuring. My husband is taking it very well but I’m not sure if that’s just for my benefit as I also have my father who is dying so I’m going through a stressful time. I am reading up on PD as much as I can to help us understand and be in some kind of control of it. Thanks for your reply x

Hello Nufcash thank you for the information Im glad you are-doing well with DBS. I have read about this it something my husband could consider when needed. He has informed his managers and HR and they are ok with him still driving also they have said if he wants to retire on ill health he can. We have also informed the DVLA but not heard back from them yet. We told all the family last week and they are very supportive. I’m so glad I found this forum it’s a very useful tool. Thanks again and take care x

Hi KMac1, I’m glad to hear your husband is receiving the support he needs & his company know about his condition & have given him options which is really good. Have you inquired about if there is a PD support coordinator in your area who can help put you & your husband in touch with support agencies & also advise on which benefits your husband & yourself may be entitled to (I have a Blue badge even though I don’t drive plus a freedom pass which is a great help & lower rate DLA all through my local coordinator). I’m sorry to hear about your dad & hope you’re getting support for him as well.

Hi KMac1, how are you both doing?

Given your husband’s diagnosis was last week, it may be a few weeks before the PD Nurse receives your referral.

Sorry to hear about your father. You do have a lot on your plate at the moment and am glad you found this site as a source of knowledge and support.

Take care and keep in touch.

Thank you Joanie67 yes it’s a stressful time at the moment but I’m trying to be a positive as I can. I will keep visiting this forum and keep in touch. I have received good advice from other members as well. Take care xx

Hi Nufcash thank you for the information I’m not sure if my husband and I could claim any benefit as we both work full time at the moment but I will certainly look into it. Our consultant said he has put us down to see a DP nurse but it’s early days so not expecting to hear from one just yet. I have been given a support phone number from this forum so I will give it a few more weeks and if I’ve not heard anything I will call them. Take care k

Thank you Reah for this information I will continue to visit often Thanks again