Hello everyone my name is Ged
Firstly thank you for allowing me to join your group. Secondly I want to say from the outset I do not have Parkinson’s. My brother has it and I’ve joined this group to ask advice on how to help me help make my relationship with my brother the very best I can via me asking all you families and sufferers alike an awful lot of questions, so please be patient with me.
The background to this story is sometime back me and my brother had a family breakdown and I haven’t seen him properly for a very long time, recently he agreed to come to a family meal and we met up and spoke for a while. Whilst I found out a few months ago that my brother had Parkinson’s he severely down played just how bad he was. Yesterday I saw him in person and I was devastated to see how poorly he had become, I literally fought back tears after hugging him, not out of pity, but out of shock because of how Ill he looked. I have decided that I’m not going to treat him as a Parkinson’s case that’s my brother, but I want to learn how to not embarrass him or hurt him in anyway and I want to treat him as my brother who happens to have a medical condition. Please help me learn how to treat my brother as normally as possible whilst gaining knowledge about how to help my brother deal with this devastating condition. I literally know nothing about Parkinson’s so my first thing is to learn as much as I can about the basics of Parkinson’s. I’ll thank you all in advance for all your help
Ged (a broken hearted brother)
Hi Ged,
Welcome to the group, and thank you for sharing your heartfelt story. I’m sure other members will jump in to welcome you. Meanwhile, I’d encourage you to look around and see what you discover.
Your dedication to reconnecting with your brother and supporting him through his journey with Parkinson’s is truly admirable.
First and foremost, it’s important to treat your brother with the same love and respect you always have. Parkinson’s can bring many changes, but maintaining your bond as brothers is essential.
To get started, you might want to educate yourself about the condition. Understanding is the first step, and you can find a wealth of information on our website that covers the basics and more detailed aspects of the condition. Here’s a good place to start: Parkinson’s UK Information.
Being open and honest with your brother is also key. Let him know that you want to support him and that it’s okay to talk about his condition. Ask him how he prefers to handle discussions about Parkinson’s and if there are specific ways you can help.
Remember to be patient and flexible, as Parkinson’s symptoms can vary day by day. Some days might be better than others, so being adaptable to his needs is crucial.
Joining support groups for families and carers of people with Parkinson’s can provide valuable insights, tips, and emotional support. Connecting with others who understand what you’re going through can be incredibly helpful. You can also call us on 0808 800 0303 for free and confidential one-on-one support.
Lastly, sometimes professional advice from healthcare providers, physiotherapists, or counsellors can offer more tailored support for your brother’s specific needs.
Your willingness to learn and support your brother is already a huge step. Don’t hesitate to ask questions here or reach out to Parkinson’s UK for more resources. We’re here to help you both navigate this journey together.
Sending you and your brother strength and support,
Forum Moderation Team
Federica
Hello Judgeged
Welcome to the forum. Everyone who has any connection with Parkinson’s in any way at all can use the forum for whatever they may need - as indeed are you.
First I must thank you for the honesty you showed in your post and I must say, and this may surprise you, I don’t think you have too much to worry about. You wrote ‘ I want to treat him as my brother who happens to have a medical condition. ‘ I have Parkinson’s. I was formally diagnosed in 2009 and I’ve written more times than I can remember writing here on the forum that I never give Parkinson’s star billing, that I am always Tot first and I happen to have Parkinson’s. Nobody, whatever their condition should, in my opinion, be defined by their medical condition but sadly many do and one of the most difficult things about Parkinson’s is that it is not a condition that is widely understood even amongst the health professionals, However, I’m getting a bit ahead of myself here.
@frederica.mod has given you some excellent advice to get you started on your quest to learn about Parkinson’s in order to support your brother. What I would say to you is don’t go mad reading everything you can lay your hands on. There is no need to rush. Parkinson’s moves slowly in most people and to dive in head first into all the information available can be counter productive , cause information overload where you can’t see the wood for the trees and run the risk of being confused, depressed and 101 other negative emotions. So pick where you start wisely.
Parkinson’s is a complex condition that has some 40 symptoms both motor and non motor and for many it is the non motor that can be hardest to live with. It is also known as a very individual condition ie we can share the same symptoms but their impact and severity can vary hugely between individuals. Parkinson’s symptoms can also vary widely day to day or even within the course of a day. The complexity of the condition means individuals have to find a way of living with it that suits them. There is no right or wrong way, only the way that is right for that individual. In my opinion there are as many ways to live with Parkinson’s as there are people living with it. My way refined over time since my diagnosis comprises three things - medication (once the right prescription is found which is not as straightforward as it sounds) a regular exercise routine (strongly recommended as it is generally regarded as the best way to manage symptoms to the point of possibly slowing down progression) and third and to me the most important one of the three and that is to keep a positive mindset - that comes up time and again and you don’t need to read many of my posts to see just how important that is to me.
That’s how I live with Parkinson’s. It seems to me that the best thing you can do for your brother now is first and foremost re-establish your relationship, get to know and feel comfortable with each other. Clear the ever of anything ‘left over’ from the family breakdown and then listen to him. Follow his lead in how he has been living with his Parkinson’s and ask such questions as may be relevant to clarify what that may mean for you. For example my family and friends have had to learn to sit on their hands - they know I will ask for help if I need it, they will offer but not mind if I say I can manage and although I know I can sometimes look like I’m struggling or I’m slow and that they are watching me carefully out of concern, they won’t take over as they know I know what I can do. I’ve got used to people when I’m out and about leaping in to help when I don’t need it and I would prefer they asked first if I needed help, but I always accept gracefully because it is well intentioned. However your brother has chosen to live with his condition is what, I think you need to know at this stage - take your cue from his lead, observe and learn how his symptoms affect him and maybe use that as a start point for reading, ask questions within the parameters of what he is comfortable with which means listening as much as speaking - I am comfortable with any questions people may wish to ask me but not everyone can do that Most of all remember what you wrote ‘ I want to treat him as my brother who happens to have a medical condition. ‘ or as I say it ‘I am Tot and I happen to have Parkinson’s.’
Good luck and come back any time. I hope at least some of what I have written will help.
Best wishes.
Tot
Hi Ged welcome If your brother has accepted that he has PD then this is one step forward, they say it does not run in family’s but 2 years ago my brother was also diagnosed with PD myself I have had PD since 2010. My brother finds it very hard but we are getting there, What I found helpful when I first had PD was to get involved with raising money for Parkinson’s UK, My daughter in laws and myself did one of the walks / when I used to play green bowls I set up two to tourment’s to raise some money. Not everyones cup of tea but you do meet a lot of freindly people and what I found out was that Joe public are curious about PD they also want more information so I just hand them one of the leaflets you can get from PD uk. I hope I that i have not gone on to long, but look at the site where you can join in to raise money for Parkinson’s uk. this is only my feelings if it’s not what you or your brother like doing then look at other ways, Please keep posting let us know how you are getting on, Oh!! just a qoute from a TV show Hey let’s be careful out there.
I’ve just had the letter from the hospital saying I have PD. My grandfather and my mum had PD (both same side of family). Difference in my case the consultant thinks its MSA, will find out when I have an MRI Hope before I disappear for two weeks in the un