i’ve recently been trying to learn more about parkinson’s disease as it has affected someone close to me and i want to better understand how to support them. i have been experiencing confusion around symptoms, progression, and how different people manage daily life with this condition. however, i am not sure what information is most reliable or what practical steps actually help improve quality of life, so i would really appreciate hearing from people who have experience with this. i’m hoping members of this forum, whether patients, caregivers, or healthcare professionals, can share their insights, routines, or advice on managing day-to-day challenges. any guidance or personal experiences would be very helpful.
Hi @zenova, welcome to the forum, and thank you for sharing this note here. It’s very kind of you to wish to educate yourself on something that is affecting someone close to you.
While we encourage other forum members to share what worked for them, we have pages on our website that address all the points you raised.
We don’t wish to overwhelm you with links, so we’ll point you to the page on symptoms here: Parkinson's symptoms | Parkinson's UK, which is often a good starting point.
We have pages about progression, managing daily life etc too, and you can access these in your own time. The boards on this forum are also a very useful source of information and experiences.
If you ever wish to chat to someone in our team, we’re here for you on 0808 800 0303, and no question is too big or too small.
Hello Zenova .. How kind of you to be concerned about others. I am 72 & live alone. I was diagnosed with Atypical Parkinson’s about 3 years ago. There are numerous types of Parkinson’s & most are likely to have different symptoms. Everyone’s journey is different. I think I have had Parkinson’s symptoms for years before my diagnosis. If you have any questions do ask.
Having Parkinson’s is scary to start with but I got used to it & it doesn’t bother me over much now.
The only treatment is medication, I am on Co-careldopa & Rasagiline which works well for me.
I hope you have found the replies you have had to date useful. I am a great believer in having access to good information because that can give some control over things that happen when diagnosed with any life changing condition, including Parkinson’s; it gives you a means to having your voice heard. Having said that, too much information when you try to get a handle on ‘the whole deal’ or at the ‘wrong’ time can be detrimental and cause more problems than it resolves. The questions you ask are perfectly reasonable and on the surface seem sensible - you’re looking to be prepared for whatever lies ahead and you are doing this for the right reasons. However it is important to understand that Parkinson’s can affect people very differently even when symtoms appear to be the same. It is a condition that you can only prepare for up to a point because it doesn’t follow a natural progression starting at 1 and ending at 10 sort of thing. I and many others would advocate keeping the information you are seeking to that which you need to know at the time. At the moment you are coming from the perspective of a person who wants to give support to someone newly diagnosed and the early days can be difficult. The response by some is to read everything they can get hold of, which is effectively the same as you are asking here on the forum. Getting too much information at this point can be counter productive. It is likely you will find yourself getting information overload and then only remember the worst case scenario or the information will overwhelm and feel impossible to cope with. It is something that Bernard of the moderation team touched on in his reply and Steve2 is right when he says if you have any questions, ask (I would amend that slightly to say specific questions). Similarly Minty’s reply was excellent and to have such specific markers for you to consider is probably the sort of reply you were most hoping for. Even replies such as Minty’s however, need to be considered with a critical eye and keep in mind that they are things that work for Minty and her husband and do not necessarily apply across the board. I, for eg, don’t need to re-order my meds. Repeat prescriptions are sent direct to my pharmacist who puts them into blister packs and I simply pick up 4 trays giving me one month’s supply once a month - I don’t otherwise have to think about it at all until if and when my meds change. Similarly I don’t dispute the importance of having your meds on time and it is good advice. However I have found that I do have a bit of leeway with the time - if needs be I can go another half an hour before I reach a critical point and that can be quite useful. I have also found that I can sometimes alter the timing of my meds so that a planned day can be better managed. That doesn’t sound like it would work for Minty and her husband and that’s fine but I have been diagnosed over 16 years and in that time have gained a confidence in what works for me. On the other hand I too would say exercise is important as is the importance of balance between activity and rest. I accept that Minty is only saying what works for them and you might be able to take something from her list. I am only writing as I have done to demonstrate that at the end of the day you can only deal with issues as they affect you or the person you wish to support so trying to take on board the whole picture at any stage but particularly in the early stages, may not be as helpful as it first appears.
Both of you need time to adjust to life living with Parkinsons but take baby steps, concentrate on what you need to know now to get you through these early weeks and months and gradually you will both find your feet, learn what works for you and how to adjust things that need to be changed as the Parkinson’s progresses. In time you will be able to do as Minty has done, build a list of things that work for you some of which may be the same as Minty’s, others may be different. You may have to take that on trust at the moment but it does happen. A final point to remember is that the condition moves slowly in most so there is time to adjust and adapt.
I know what I have written may have caused more confusion than it solved and may even have overwhelmed you by suggesting there is nothing concrete about the condition which will give you some stable pointers about Parkinson’s. Even though it may be a bit abstract I hope you get the gist - however you get your information and what information is given just look at it with a critical eye and measure it against what is actually happening in your own particular circumstances. Do that and you can be sure you are giving the support you want to give in the best way to help the person with Parkinson’s.
thank you all for taking the time to share your thoughts and experiences, I really appreciate it. Reading your replies has helped me understand Parkinson’s disease in a more realistic and practical way.
Tot, your explanation about not overwhelming myself with too much information really made sense, and it helped me slow down and focus on what actually matters right now. Bernard, Steve2, and Minty, your advice and different perspectives were also very helpful and gave me a lot to think about.
I’m grateful for the support and honesty here. It’s reassuring to hear real experiences, and I’ll definitely take things step by step and keep learning along the way. Thanks again everyone.
Thank you for your reply and it was nice to hear that between us we helped a bit. Just so you know that you can live for many years with Parkinson’s, I thought I would tell you that at the end of the year I will be 17 years post diagnosis. I live happily alone with minimal help which I arranged mainly because I gave up driving and it makes getting around easier, I’m still standing, still enjoying life and am actually quite content, I also have normal pressure hydrocephalus and I am not unusual, many of us here on the forum live with a dual diagnosis and still have good and productive lives. Obviously I have had to embrace a few changes along the way and it is sometimes a challenge but here I am nearly 17 years on and very much doing ok thank you,
