Hi all, my husband was recently, finally diagnosed with Idiopathic Parkinsons, after waiting an eternity for an NHS appointment, we finally when private and got the diagnosis in April of this year. My husband had been suffering with a resting tremor down his right side for approximately 2 years and stiffness in his arm. After receiving the final diagnosis he was put on co careldopa which made a massive difference to his stiffness but had no effect on his tremor (we had been warned this might happen). He has since had the odd stiffness starting down his left side and as recent as last week his foot has frozen and has slight trips (no falls thankfully). He is only 56, does this sound normal for his diagnosis? Iâm terrified his symptoms are hastening and may just continue getting worse and worse. He still works full time and is now on a 3 year medical driving licence. were both concerned this deterioration may impact his driving, which he obviously needs to be able to get to work each day. are we over worrying everything? could this just be a minor change or is he starting down the road of becoming physically disabled 
any advice would be welcomed as I am really worried about him and our futures. Thanks in advance
Hi Mazfoz70, firstly we would like to welcome you to the community. We are sure you will find help and support from all of our wonderful members.
You can always reach out to our helpline who can offer help and support, we do have Parkinsonâs Nurses available who might be able to help provide some insight into your questions. You can give them a call on 0808 800 0303. They are open Monday to Friday, 9am to 6pm and Saturday, 10am to 1pm.
Good evening Mazfoz70 ⌠I am sorry to hear of your husbandâs recent diagnosis. However draw comfort that there are far worse similar conditions he could have.
Like your husband I have Parkinsonâs of the Atypical variety. I am 70 years old & was diagnosed with this in June 2023 following a positive datscan & a normal brain scan [given to rule out the nasties]. Iâd had symptoms for a few years. I also have a medical driving licence. My driving is fine & I donât anticipate this changing short term.
Along with up to 55% of Parkinsonâs sufferers I have âneuropathyâ & to me it sounds like your husband also may have this as a âfrozen footâ is a symptom. Mine is treated with a drug called Amitriptyline. He should get it looked into.
I am also on co-careldopa which I am pleased with. I did try two other Parkinsonâs drugs which didnât work.
My main issue is my mobility with a slight resting tremor. My gait freezing is the most troublesome thing I have to contend with. Add in fatigue, sleepless nights & bad dreams & nightmares which could be the medication I am on.
We are all slightly different in the symtoms we have & how we react to the medication.
Thinking outside the box you may want to consider where you live in the nearish future. I live in a ground floor flat which I find ideal.
Any questions do ask.
Best wishes
Steve2
Hi Steve, thank you so much for your reply. Your response has given me some hope that maybe there are other medications available should My husband need them. This hasnât been mentioned to us as far as I can remember so I will definitely keep this in mind if the frozen foot continues. I hope we can both remain as positive as you sound and learn to adjust to each new âsymptomâ that will undoubtedly come our way. I guess we just have to take one day at a time x
I may have had Parkinsonâs for 8-10 years so I conclude with me it is very slow moving.
The neuropathy I have in my legs & it varies day to day. It is always on my left side & it can be left big toe, left foot & parts of my left leg. As I suggested he should get it looked at. The condition makes a trip or fall more likely.
I have had 4 âfallsâ to date. Three recently when I had covid. I use a walking stick which is a help. I was very anti getting one but Iâm glad I did.
Best wishes
Steve2
Hi Mazfoz70, I am now in my 15th year of having Parkinsons, diagnosed at 57 with idiopathic parkinsons (aptly named because they donât know what caused it) The first thing is to get his medication sorted, to find what meds suit your husband, there are so many out there! Take a look on-line for a list of parkinson medication & the side affects. I was first prescribed Ropinirole (Requip) XL in small doses and gradually increasing. (Supplied by GlaxoSmithKline UK Ltd)
I was fine on these no problems at all but be warned they did NOT suit
everyone!
Regards Sheffy1
Hi Mazfoz,
it sounds like he needs his meds reviewed. I would speak to the Parkinons nurse or his consultant. ParkinsonUK have a good helpline too. Parkinsons does get worse as times goes on but there are many people kicking around with good quality of life 15 or 20 years later. There are some good podcasts if you interested. The broadcasters in the second podcast have had parkinons for a longtime:
Thereâs a lot of information about everything to do with Parkinsons in those as well as the ParkinonsUK website.
all the best
Podd
Hi, I was diagnosed with Parkinsonâs 12 years ago I was 54. My symptoms was freezing and falling over all the time and it got to a stage when I couldnât go out by myself. Before all this I worked as a Manager at Sainsburyâs on my feet 12 hours a day. I had to give this up and as my reactions to walking were poor so was my driving when it came to turning left or right and at a roundabout, My brain was telling me to go but my feet were just wavering about, and when my feet decided to work it was at the cost of me nearly causing an accident. My point is that if your husband has started to feel that his symptoms are getting worse and it is affecting his driving then it is time to say No I canât do this anymore. My symptoms were quite advanced from the beginning of my diagnosis, It just came on suddenly, I decided to hand in my driving licence as i didnât feel safe, I had to give up work, I have to take 27 tablets a day all versions of co-careldopa to help me. The good thing is,there is help for your husband, via the falls clinic and lots of different exercise classes to help with balance and keep fit. If you want to know more please write to me. Sorry it seems a bit daunting but together you will survive this.