I am 60. My husband is 74. He was diagnosed with PD in November 2018.
No tremors, but altered gait and heaviness in his legs and a feeling of being off balance.
He was prescribed co-careldopa, changed to madopar last year to try to help stomach/digestive/constipation problems. (It hasn’t, much).
He has changed almost beyond recognition. Lost stones in weight, always cold, easily tired, has 2 orc3 baps each day and goes to bed 9pm-10pm. Sleep is disturbed by toilet visits but he falls asleep again easily. Wakes early, 7 ish. Sex is a very distant memory.
He still drives, gardens, tries to get out walking as much as possible. Reads a lot. Hasn’t had any falls yet except once on ice. Manages pretty well dressing/self care etc.
My main concern is cognitive function. He was a teacher, and a very calm, cheerful, organised person. Now he is easily flummoxed by just about everything: the dishwasher, the TV, his mobile phone (not new), using his online banking, when appointments are, when the bins go out (despite a printed reminder and talking about it)… He is getting his words mixed up at least once every day now. Finds it hard to explain things when asked.
It’s breaking my heart. I am doing my best to be calm and reassuring and make sure he takes his meds regularly.
No face to face doctor or specialist appointments since before March 2020. We have seen our Frailty Nurse once, who did a very quick cognitive test: he got some questions wrong.
I have had a meltdown (mother being assessed for dementia 180 miles away) and the frailty nurse us coming back next week. Husband’s sister (ex-nurse) is talking to his doctor tomorrow with a long list of my concerns. She has written consent from my husband to do this.
Just wanted to confide in the forum in hopes that somebody may have some experience/insight. Feeling like it’s the end of the world.
Susan
Hi @SJG, 
Welcome back to the forum.
My thoughts go out to you are your husband, it’s sounds like the past year has been really tough for you both and I’m sure the pandemic didn’t help with this either. Sadly, many people with Parkinson’s experience side affects from Madopar and based on the information you’ve shared, it sounds like your husband shows typical signs of someone that is experiencing some of the common side affects such as sleep problems, anxiety and loss of appetite (which may be the reason behind the weight loss).
Due to the pandemic and the health and safety regulations that NHS staff have to adhere to, many people have had a face to face appointments over the last year, however, I would encourage you to raise your concerns with the frailty nurse during his next appointment. I think your sister in law is definitely on the right track with making a list of your concerns for the attention of his GP - they may need to review his medication as a result of this.
Lastly, it is important that you look after your mental and emotional wellbeing. We have a lot of support and advice for carers on the Parkinson’s UK website which I think would be of great benefit to you. Please visit our website here: https://www.parkinsons.org.uk/information-and-support/caring-someone-advanced-parkinsons
Do remember that you can speak to an adviser via our helpline on 0808 800 0303 from Monday to Friday: 9am to 6pm
Saturday: 10am to 2pm . Our helpline is closed on Sunday and bank holidays.
However, our helpline can put you in touch with a local adviser if you need more in-depth support.
Do take care.
Best wishes,
Reah
Hi Susan. So sorry to hear of your problems. My husband was diagnosed in 2017. TBH he doesn’t currently suffer from many of the usual physical symptoms of PD (apart from fatigue), but his cognitive abilities began deteriorating at an alarming rate. As with your husband, this was extremely distressing to witness as he is a writer and incredibly intelligent. Because I felt his physical needs weren’t the most pressing problem, I managed to get him transferred to a consultant specialising in cognitive problems in PD. He has subsequently been diagnosed with Parkinson’s Dementia. I write all this because his consultant prescribed Donepezil - a drug often given to dementia sufferers in an attempt to slow down the deterioration. Now, it might be coincidental, but a few weeks after he began taking it, there was a marked improvement. He had lost the ability to use his laptop a couple of years ago; these days he’s at the computer by 10 and works through the day. I’m not saying he doesn’t still have cognitive problems, but there is a marked improvement - which, frankly, the physicians are amazed by. Might be worth asking his consultant about? Good luck!
I reckon everyone on here recognises, or has some of these issues themselves, I do for sure (particularly the cognitive issue and one other - which is hard to accept).
With NO medical background, I hasten to add, Testosterone levels tick some boxes, while prostrate ticks others.
I think you need to chat with a doctor who will listen (they do exist, I’m told) to rule out certain other things first.
‘Parky’ often seems like a great big golf umbrella under which you can put various things out of the way
it seems to me.
Phil
Thank you, Rhea, Oodles441 and Phil_63.
Lots of useful info in your responses.
The thought of dementia absolutely horrifies me but I will take on board the possibility of Donepezil when we eventually get a consultant appointment.
Thank you all for your kindness in responding: so appreciated.
Hello again.
Husband had a consultant appointment (phonecall again) 2 weeks ago.
The regular consultant is off on maternity leave again so this was a new person.
Recommended a DAT scan. The consultant mentioned the possibility of Lewy Body Dementia to me (husband didn’t hear that bit and I haven’t told him).
We miraculously got a cancellation appointment for the scan the next day! Have to wait 3 weeks for results.
It’s now 2 weeks since the scan.
I’m sorry to say I’m having a bit of a breakdown over this. Very tearful, very scared.
Anybody able to do a bit of virtual handholding please
?
Many many thanks.
Hello Susan.
Hand & hugs here for you. What’s the worse that can happen? That your husband has a diagnosis of Lewy Body Dementia? A change in diagnosis isn’t going to change things but it will help you understand what’s going on if that’s the outcome of his scan. PD and LBD are two ends of a spectrum after all and people may sit at any place along it, and both are very individual, no two people alike.
My husband is 76 & like yours was diagnosed with PD in 2018. Last year his neurologist started using the term ‘Lewy Body Disease’ because it had become obvious that his cognitive issues were worse than expected & getting worse. Not what we wanted to hear but it wasn’t a surprise, we could see what was happening ourselves and had mentioned them to the neurologist.
The revised diagnosis has made our lives simpler as now we know what the problem is, we are able to plan properly. There are some difficult times of course but we still have a good life & many good times. Hang on in there & if your fears are confirmed, I can highly recommend the information you can download from the DementiaUK website. What is dementia with Lewy bodies - Dementia UK
Let us know how things pan out & always remember you matter too so build in care for yourself. My MIL had DLB so I know the difficulties. It helps to talk & plenty of people on the forum are willing to listen.
Hello all.
Husband (74, dx 4 years ago) had a DAT scan early July.
Got a face to face consultant appointment 2 days ago. Did cognitive assessment. Husband has visuospatial problem and executive function problem. Doctor said it didn’t seem to be Lewy Body dementia but referred him to memory clinic for an Addenbrookes test to clarify what’s going on.
Brain scan was “abnormal” re dopamine uptake but that I believe just confirmed the original parkinsons diagnosis.
I am presuming that husband definitely has a form of dementia. He does seem to be deteriorating at a frightening speed.
Have been advised not to panic (!) until the further testing/diagnosis is sorted out.
Am obviously totally panic stricken and terrified.
(Meanwhile my mother, 200 miles away, is awaiting a dementia diagnosis of her own and getting worse and worse).
We’re sorry to hear things are so difficult, SJG. We’d just like to remind you that you can call and speak with our advisers at 0808 800 0303. They are happy to lend an ear, and can even put you in touch with some local support to make things easier.
Best wishes to you and your family,
Jason
Mod Team
Hi all.
Husband scored 76/100 on Addenbrookes test this week and is referred for a CT scan.
Honest response please: this means some kind of dementia, doesn’t it? And how do I attempt to find any positives in this?
Best wishes to you all.