Wife to newly diagnosed husband

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? I’m 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 :frowning: 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 Parkinson’s 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 husband’s recent diagnosis. However draw comfort that there are far worse similar conditions he could have.
Like your husband I have Parkinson’s 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]. I’d had symptoms for a few years. I also have a medical driving licence. My driving is fine & I don’t anticipate this changing short term.

Along with up to 55% of Parkinson’s sufferers I have “neuropathy” & to me it sounds like your husband also may have this as a “frozen foot” 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 Parkinson’s drugs which didn’t 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

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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 hasn’t 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 ‘symptom’ that will undoubtedly come our way. I guess we just have to take one day at a time x

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I may have had Parkinson’s 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 “falls” to date. Three recently when I had covid. I use a walking stick which is a help. I was very anti getting one but I’m glad I did.

Best wishes
Steve2

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Hi Mazfoz70, I am now in my 15th year of having Parkinsons, diagnosed at 57 with idiopathic parkinsons (aptly named because they don’t 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

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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:

There’s a lot of information about everything to do with Parkinsons in those as well as the ParkinonsUK website.
all the best
Podd