As I imagine many people are, I am looking for hope! I am in my thirties and my Dad is newly diagnosed with Parkinsons. He is struggling, an absolute mix but he appears to have took a downward spiral since a fall at home. He was only diagnosed a week ago, very withdrawn, struggling with speech and motivation, creating low mood. I pushed for him to start medication asap, so he has been given Sinicet? Dad has started to lack being alert, will this help at all? Or will another form of medication? Wishing everyone the best going through this.
Hi @GemsDad44, and a warm welcome to the forum. I’m sorry things are tough at the moment. A new diagnosis is hard for everyone involved, but our forum members have all been there. I’m sure you’ll be hearing from them soon.
Meanwhile, I wanted to make sure you knew about the Parkinson’s UK website. There’s a lot of useful information about different topics, such as new diagnoses and being a carer, so do explore the site in your own time.
If your dad needs help or if you have any concerns about your emotional wellbeing, I’m sure you already know that you should first speak to your GP, specialist or Parkinson’s nurse. They can offer you advice based on your own situation. Most people don’t understand how difficult it is to be a carer and support people with Parkinson’s. As you take on this challenge, it’s important that you take care of yourself. Our page on Caring for Someone with Parkinson’s is full of ideas.
You can also contact our helpline and speak to one of our advisers about any concerns that you may have or get advice. Please feel free to give them a call on 0808 800 0303.
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It is not always easy to know what to say to people such as yourself seeing someone you care about being newly diagnosed with Parkinson’s - about which you probably know little if anything - and then apparently watch them crumble before your eyes. You don’t say how long the road has been to reach this point but whether long or short the actual diagnosis can and does hit many very hard. I am no doctor so I can only offer a personal view but it may be that at least in part what you are seeing as physical change might be due to his struggle to understand/accept what has happened. The brain is an extremely powerful tool and Parkinson’s brain, as I call it, sometimes seems to have a logic all of it’s own. Whether or not that is so with your dad you are clearly having a hard time right now. I have lived with my diagnosis for what will be 12 years come December and you will find as I did, that almost everything connected with the condition is slow. Parkinson’s means living with symptom control, there are a number of medications and one size definitely doesn’t fit all. It can and often does take time to find the right regime and one week on is no time at all. Hopefully your dad’s medication will get sorted and you will see some benefits before too long. In addition to the advice given by Janice P, I would add the following points based on my own experience and what I have picked up from the experience of others which may help.
Don’t be tempted to read everything you can lay your hands on at the moment. It can lead to information overload and give a distorted negative picture that’s of no help in the early days.
Having said that it’s important you understand what is being proposed so note down any questions so you don’t forget, and get the answers from reliable sources such as your dad’s medical team, his GP, the helpdesk and yes I include the forum in that.
Don’t be afraid to go back to the consultant if you are worried and be prepared to be a bit tenacious if needs be - it’s not been my experience but several forum members have had problems in contacting their consultant.
Find out if there is a local Parkinson’s nurse and support group both can provide good support.
I strongly believe that a positive mindset is crucial. It’s not everyone’s way and we can each only manage our Parkinson’s with what feels right for us as individuals. There are no right and wrong ways only the way that suits.
You wanted hope. Well I’m not going to pretend it’s always a bundle of laughs, it can be challenging and frustrating and sometimes I feel like I spend my life explaining because Parkinson’s is generally not well understood; on the other hand it’s not all doom and gloom either. As I said nearly 12 years on, my symptoms are pretty well controlled, I live alone and pretty much manage everything myself - I arranged privately 2 hrs help a week with a very flexible arrangement and that’s worked well for several years. Basically I just get on with the business of living and just make adjustments as they are needed - it is slow moving in most so there is usually time to get something sorted. My own approach is to say, I have Parkinson’s it doesn’t have me, I am first and foremost Tot who happens to have Parkinson’s - I never give it top billing.
It is very early days for your dad so take heart. We’ve all been there and survived there’s no reason to think your dad will be any different once he’s negotiated the current rocky road.
Take care, good luck and hang on in there.
Thank you for letting me know areas I can access, I have felt out on my own at times because of lack of knowledge and Dad is still awaiting his Consultation, I pushed for his meds to start earlier because of how bad he had became, I will definitely look into the things you have mentioned.
Thank you for giving me a heads up on a few things, I have already contacted PALS through hospital as connection with Dads Doctor was difficult, however once he did contact me, he was very supportive and started Dads medication earlier.
I know it’s going to be a long road ahead, but I feel the more advice I seek for him the more I can help him. I think you are right as well about reading too much, one size doesn’t fit all. Dads mobility is not good but I get quite concerned about the tiredness and lack of energy. We are due to see Consultant in August and I have started a list of questions.
Good to hear you’ve taken some action. Just a note on the comment you made about tiredness and lack of energy. It is not the whole thing and it may be stating the obvious which is probably precisely why it is rarely overtly written but living with Parkinson’s is tiring. Everything uses more energy and I don’t mean just the obvious things but everyday stuff like getting up from a chair or bed, making a cuppa, getting washed and dressed and so on. It all takes a bit more effort and these small bits have a cumulative effect on energy levels. So aim to simplify tasks and there are several ways to do this eg changing routines to suit the optimum time in the medication cycle, balancing activity and rest, arrange the home so that things regularly needed are easily to hand, using shortcuts like ready prepared vegetables, equipment. Just a thought to bear in mind
l was diagnosed in 2005, went on the Levadopa (Madopar) in 2007. Initially it did not have much effect. l spoke to a friend who is a neurosurgeon and he said the dose l was on was sub-therapeutic and that l should double it. l did and within a week l felt like Superman. l combined the levadopa with Azilect and Mirapexin - beware of the latter as it does have side effects in that it induces impulsive/compulsive disorder eg gambling, hypersexuality. When the illness got worse in 2013, l had Deep Brain Stimulation (DBS) surgery which stopped my tremor completely. My advice is to go for anything which is offered - life is too short.
Hi Tim I am going for DBS but want to be fully under general anaesthesia. The more forward thinking surgeons are agreeing that there is not a need to be awake. Where did you have yours