Healthy Living

Informing Your Family and Friends about Parkinson's Disease

Informing Your Family and Friends about Parkinson's Disease

Key Takeaways

  • After you have gathered significant information about your disease, discuss it with your spouse. Start first with short-term goals, then gradually move on to the major changes that could happen in your life.
  • The amount you tell your kids will differ based on their ages. If your children are young, explain your condition in simple terms.
  • When it comes to telling your friends, keep your circle small so you can get a more controlled environment.

If you have Parkinson's, the time for you to explain Parkinson's to your friends and family will certainly come along one day. When this comes, this can definitely put somebody in a pressured state which can be really distressing and agonizing. It is true that anxiousness and discomfort are inevitable during this situation, but proper preparation and delivery combined with the right timing can greatly minimize the negative effects it causes to everyone. The details about your sickness may not be necessarily disclosed right away to everybody, but letting the closest to you know the relevant information can be a big help. The people closest to you are commonly the best people to give you sympathy and support. It is also best to let them know as soon as possible so that they can prepare for the things that can happen along the way and how they can help you further.

What to say and when to say it

It may be easy to keep your illness a secret at first, but as time progresses, more obvious symptoms will eventually show up due to the stress brought about by the disease or its natural development. Symptoms like changes in the way you walk, speech issues, and other motor actions may become more noticeable to your parents, siblings, friends and colleagues. Children may be considered “innocent,” but they usually feel and notice more than what adults do. Preparing for the right things that you need to say and when to say them would be very crucial. Knowing how much detail you must reveal to your family and closest friends after being diagnosed can give you more control of the situation. When this happens, you can easily anticipate potential questions to be asked, and you can minimize the possible negative effects on them.

Informing your spouse

A spouse generally has some kind of unique connection with you. This is because you basically spend a lot of time together (this also applies to your boyfriend or girlfriend). Because of this fact, he or she would probably have an idea of what is happening to you- basically, in almost every aspect of your life. Informing them of your condition is nerve-wracking at first, but you must always remember that these are the first people who will be ready to understand and care for you. It may take a few months or even a year for them to fully grasp a very sensitive matter, but there will always be a very high chance that they will be the ones to accompany you until the end. You might hear fear, blame, concern, or support in their voices, but as long as you love each other you will take on the condition together.

Normally, people with Parkinson’s disease have their spouses with them during their checkups, so spouses are commonly the first people to know about the condition. But for those spouses who are not present at the check up, it is advisable to tell them within the week from the time you are diagnosed. Spouses are partners for life, so work everything out together. The first time you hear the news that you have Parkinson’s disease will certainly fill you with a lot of questions. Ask everything together from your doctor, read books together, and visit relevant websites together to get more answers and clarifications about your condition. The more you ask and research together, the more you can plan for your future. After you have gathered significant information about your disease, discuss it with your spouse. Start first with short-term goals, then gradually move on to the major changes that could happen in your life.

Informing you kids

Children have a totally different level of judgment as compared to how adults can weigh things out. Kids may not instantly understand the complexities of your disease, but they are very sensitive to their feelings about it. Different age groups must be handled differently. Here are some suggested methods on how to deal with children based on their age:

3 to 6 years old: Keeping it short and simple is the key. The main purpose of this method is to make the child understand the situation based on the words he or she can understand. Putting even a little complexity in words might overwhelm him or her which can only build more confusion.

6 to 11 years old: Kids at this stage are not very different from the 3 to 6-year-old group in terms of keeping the words simple. The only difference is that you can give more details to the 6 to 11-year old kids, like the small changes that they can expect to see from you.

12 to 18 years old: Telling children of this age group about your condition needs more delicateness. This stage is where children start to become mature and hear more “adult” things. This transition phase brings a lot of mixed emotions, so be honest with them. Do not ever make them feel that you are hiding something from them. Always talk in a way that they can understand, and do not delay the truth to them. Prolonging the information will only make them feel that they are being eased out because they have no right. Instead, be honest and tell them how it can also affect their lives.

Young adults: This stage may be the most challenging part for people with Parkinson’s disease to inform their children about their condition. Children at this stage have an increased level of accountability to their loved ones, which makes them worry more about you. Even if that is the case, there are still ways to inform them gently. Set free time for both you and your child to talk about the situation and tell them directly but gently about the findings, possible symptoms, and treatment. Always build a positive atmosphere. Make them realize that Parkinson’s disease is not some kind of a penalty, and it’s not their fault that you have acquired it. Let them express their feelings about your condition, but do not dishearten them from showing their feelings. Instead, let them build rationality about what is happening.

Informing your friends

It is not necessary to inform everyone in your circle of friends about your condition. Instead, create a smaller circle where you can open up about the situation. This way, you can get a more controlled environment. You must always remember that friends and acquaintances will have varying reactions in which you can get both positive and negative results. Limiting yourself to a smaller and more controlled environment will let you handle it easily.

Parkinson’s disease for singles

For people who became single or chose to be single before acquiring Parkinson’s disease, coping with the situation might be different. This can be a very saddening experience that is difficult to handle, but there are still people who can provide help. There are relatives, close friends, and co-workers when you are in need of a confidant. If that is not possible, there are professional therapists that can provide service to you when you need it. In some instances, there are people who are still able to find partners given their condition. Never lose hope and always stay positive.