Hi everyone, I’m new to the group and desperately trying to find out more information about Parkinsonism

Back in 2021 my husband was blue lighted into hospital with sepsis he was in hospital for several weeks during that time he had two MRI head scan that didn’t show anything untoward.

My husband doctor referred himto a neurologist as he thought he had Parkinson’s, on our first appointment with the neurologist she examined him then asked him to do certain movements ie: touching neurologist’s finger then his nose, coping her hand movements and so on after she finished she said she didn’t think my husband had Parkinson’s and has now requested an MRI head scan.

Recently my husband had a visit from a physiotherapist she asked a few questions and I told her what the neurologist said it was then she told me about Parkinsonism.

Has anyone heard of this if so I would like to know more about it.

Hi and welcome to our friendly forum, @Patriciajune. I can understand your frustration and even confusion with what you and your husband are going through. It seems you are up in the air on answers to what’s actually going on. I hope this situation isn’t left hanging for too much longer.

Parkinsonism is an umbrella term for conditions that look like Parkinson; s and includes Parkinson’s itself. It sounds like this may be unclear at the moment and another visit or call with the neurologist may help clear up some of your concerns and help you get some clarification. You may find this page very helpful: Types of Parkinsonism | Parkinson's UK.

Our other members are a great source of support and they will likely be along soon to speak about what they have experienced themselves. As well, our Helpline advisers are very knowledgeable and supportive and it might be a good idea to ring them to get some guidance. You can reach them on 0808 800 0303.

Best wishes,
Forum Moderation Team

Hello patriciajune
It is understandable that you are worried and confused and want some answers and hopefully the reply by JaniceP will point you in the right direction for some general information.
What most people don’t know when the word Parkinson’s first comes knocking at their door, is that it is not a simple thing to diagnose, there is no definitive test and many of the signs and symptoms can be similar for other conditions which have a commonality with Parkinson’s but are distinct conditions in their own right; hence the umbrella term Parkinsonism is used until other conditions are eliminated and you then have a formal diagnosis. Obviously this can take some time and it can be a difficult, distressing and scary time pending completion of this process and compounded in all probability by words, terms and expressions that you are unfamiliar with.
There’s not a lot I can say that will help you through this period because I can’t stop you worrying and it takes as long as it takes. What I would say is try and keep some kind of hold on the reality of where you’re at if you can. Don’t search out anything you can find that is remotely connected to Parkinson’s because chances are you will latch on to all the worst possible scenarios. That’s all you will remember and your stress will go through the roof. The fact is your tying yourself up in knots won’t help you or your husband nor will it change the eventual diagnosis. So use that tried and tested method of deep breathing when you feel your stress levels rising and remind yourself that at the moment it’s a waiting game - hopefully not too long. I know how hard that will be for you, but if you can it may help you manage this waiting game a little easier.
My best wishes to you both

Hi Tot thank you so much for your reply.
It’s so nice to be able to interact with people that understand what I’m doing through, it’s the same when my husband had Sepsis family & friends don’t really know what it’s like, I spent hour looking for answers on the internet and the same recently and some of the things I’ve read have kept me awake worrying about them, but I have found this site I’m content reading posts on this site.
As you say, wait and see what the outcome is then we can both deal with it as I’ve repeatedly said to my husband we are in this together.
We are going on holiday soon but not venturing out of the UK the only difference is I will be doing all the driving as my husband has stopped driving since this onset, wish me luck as I’m one of those drivers that never venture outside my comfort zone.

Hello Patriciajune

I am glad my post has helped a little. It’s never easy knowing how to reply to posts such as yours when you don’t have a formal diagnosis but I wanted to give you something, a different approach if you like, which may help you and your husband cope with this strange period. What I will say to you is that I was diagnosed with Parkinson’s in 2009, I am now in my 13th year post diagnosis, still standing and believe it or not I am quite content with my life. There are plenty of people on the forum who are doing equally as well. You learn ways to live with it and can still have a good quality of life for many years in most cases. Whatever your husband’s eventual diagnosis, once you’ve had time to come to terms with it, there is no reason why the same shouldn’t be true for the two of you; it doesn’t have to be the end of the world unless you choose it to be.

I am sure you will be fine with the driving on your holiday. Just remember you should be enjoying it, so if you need to take a few more breaks than you would usually do so you can manage the driving, then do so. By the time you come home I reckon your confidence will have rocketed and you can be proud of what you have achieved.

Have a lovely holiday. I look forward to hearing how you got on in due course.

Thanks again Tot for your reply.

What I’m really struggling with is since we both retired over 12yrs ago we have always done things together, when I do go out on my own ie: into town shopping I feel guilty & lost and can’t stop worrying about him.
I bought him a mobility scooter but he struggles using it I know given time he’ll be able to but at the moment he struggles manoeuvring it around objects.

Thinking back it’s only just over 6 months ago he was walking ok using his walking stick but now it breaks my heart watching him walking without me to hold onto, and now we are waiting for delivery of a wheelchair, a push along walking aid and a perching stool.

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Back from our holidays all was lovely until two day before we were due to come home.
We went our for a walk, when I say walk I mean I walked at the side of my husband’s mobility scooter had lunch out in the sun at a near by restaurant then headed back to our caravan, I helped my husband to stand as he got off his m. scooter he walked up the steps onto the veranda then said he felt dizzy I took one look at him his usual red cheeks were grey the his eyes started to roll I managed to get him onto a chair just before he collapsed I tried tapping his face but there was no response then the worse thing happened he stopped breathing, I screamed out he stopped breathing and the people near by rushed to help, one of them was a palliative care nurse she said we need to get him on the floor just as they lowered him he started breathing again. By this time someone had a defibrillator plus call an ambulance, he was taken to hospital and was there three days before I could take him home I was given a letter for my local hospital, since then my husband has had lots of tests done but we’re still waiting to see a cardiologist, I have to talk is bp morning and night and it’s all over the place at the moment, I’m still waiting for to know why this happened.

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It’s possible that your husband suffered what is known as a
Transient ischaemic attack (TIA) where the blood supply to the brain is momentarily interrupted. There can be a variety of reasons for this occurring, but there are several drugs which can be useful in preventing recurrence once the cause of the TIA is determined. The NHS has a good website on TIAs if you just type in the initials. Hope your husband gets an answer soon. Any sudden loss of consciousness is an emergency so don’t hesitate to call the emergency services if it recurrs

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Hello Patriciajune
What an awful experience for you both, and coming at the end of your much needed holiday and having a lovely time it must have felt like some kind of rough justice. You must be so worried.

Not wishing to second guess the doctors but Grober’s suggestion that it could be a TIA - often called mini strokes - does sound reasonable and these are very common.
I hope you are not kept waiting too long for some answers.
I know it sounds trite in the circumstances but I’m glad to hear you were enjoying your holiday up to the point your husband became ill any I hope you coped with the driving.
Please do let us know how things are progressing and look after yourself too.
Best wishes

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Hi everyone it’s been quite awhile since I posted anything, at long last after numerous tests my darling husband has a diagnosis, he has Parkinsonism. Still trying to come to terms with it, his constant said she isn’t going to put him on any medication yet, why I don’t know.
I have been reading such a lot about it we’re as my husband is not computer literate so he observes about what could happen, well they do say that ignorance is bliss.
He has had quite a few falls over the last few months, on one occasion I had to ring for an ambulance as he fell outside and banged his head and had to have eight stitches, since then he now uses a walking frame when we’re out and about.
I had to report his diagnosis to DVLA and sadly he had to return his license which came as a bit of a shock for him after driving more then fifty yrs.
Just wondered if anybody on this forum is going though the same journey.

Sorry about the error’s trying to do two thing’s at once.