Hello
I am new to this site an hoping somebody might be able to help untangle what has been happening for my lovely Dad.
He has been showing signs of dementia for a number of years and had an appointment/assessment with the Memory Nurse in October last year. She advised that dads score indicates likely dementia and that he would be referred to the Consultant. (After a long wait we have the appointment next week).
We have been set on the fact that he has a form of dementia and his symptoms have worsened over the last year. More recently he has started having episodes of jerking and shaking (mainly hands and arms) uncontrollably, he gets very upset and has to spend the rest of the day in bed.
To add to this he has started to shuffle instead of his usual pace walk, feels the need to pass urine so many times and will excuse himself mid conversation, has fallen down the stairs twice and fallen out on a walk twice also. He makes up stories. Doesn’t sleep well at night (but sleeps a lot during the day).
Is dementia and Parkinson’s the same thing? Or two separate things? I feel so confused about what is happening to him and how we can help. We have no idea what to expect, my poor mum is struggling with his care and he is quite needy throughout the day and night.
Dad is 80. Sorry for the long post, we are just feeling lost xx
We’re very sorry to hear about your dad. Dementia is not Parkinson’s, but can be a symptom or a symptom of a medication. No two people with Parkinson’s have the same exact set of symptoms, and everyone who takes medication is on a regimen prescribed for their specific needs. This is why Parkinson’s is widely misunderstood, as opposed to other conditions that present the same in all people.
Our best advice to you is to read through the main sections of our website to learn in general what Parkinson’s is. You can use the handy search function to look up general info, news, and links to previous forum discussions. Take your time and look through https://www.parkinsons.org.uk/ and this forum and you will quickly learn the difference between Parkinson’s and dementia along with loads of other helpful data. And of course we urge you to be clear and direct with your dad’s medical team and do not hesitate to ask them questions as they can provide answers specific to your dad.
Hello GeesDaughter
Welcome to the forum and what a complex situation you have on your hands. In simple terms I think jason has given you some good advice which you may wish to follow up.
It is clear from your post that you and your dad and probably the whole family are very worried at all that is happening and understandably so, but I hesitate to say anything much until he has been properly assessed and you know what you are dealing with. You say you have an appointment next week. That’s not so far off and is the first step in trying to untangle what is going on with your dad. I think you need to hear what he says first and if he can’t address all the issues or refer you on, then I think you need to go back to his GP to seek further specialist referrql.
I cam emtirely understand you came to the forum hoping for some answers and I wish I could do just that but what I can’t and won’t do is second guess what is going on with your dad apart from saying it is likely to be neurological and that can include all sorts of medical conditions. What I will say and is not probably something you want to hear, is that diagnosis may not be quick or immediately obvious - it might be but neurological problems can take some sorting out.
I hope the appointment next week is a positive start to finding out whatever is going on and please continue to use the forum as you need even if only a sounding board for now. I may feel we are a bit limited to help just now but know this you are absolutely not on your own and I and others will do what we can to support you so please do keep talking - it’s a safe place to vent anything you might be feeling.
I wish I could offer you more. Good luck, take care and my best wishes to you all.
Tot
I’m new this rollercoaster called PD and I found that reading this forum has helped me a lot in trying to make sense of what’s going. I agree with what Jason and Tot says and maybe stress the fact that the need for talking and asking questions, NO QUESTION IS SILLY.
Have you and your mum looked at what help is available (including things like attendance allowance)
Hi welcome, you’re on a journey now & advice from professionals is the main thing. Parkinson’s & Lewy body dementia can run along side each other & have similar symptoms. I learnt this when my husband who is 5yrs diagnosed Parkinson’s just had Lewy body dementia diagnosis. The going to toilet constantly, falls, memory, low mood the meds given for this have improved him. Parkinson’s specialist help is given & helps your not alone. Good luck
