When I first got diagnosed with Parkinson disease at the age of 28, I came back home and I told my husband. For him, it was an ‘’erroneous diagnosis’’ from the doctor’s side. I remember his words: ‘’It’s insane to diagnose someone as young as 28 with Parkinson disease’’. At that moment in my life, I realised I had accepted my disease from Day 1, but my husband has not. And this has put a huge responsibility on me to make it easier for him to accept in a softer manner. His shock was bigger than mine, which I completely understand.
From that point forward, our relationship has got stronger, yet very different!!!
In most couple cases, Parkinson's disease symptoms and stress can interfere with communication and quality time spent together. For example, slurred speech and facial masking can cause miscommunication between the couple. Body symptoms like dystonia or bradykinesia can cause embarrassment for one partner or the other, and this can lead to cancelling a dinner out, cancelling a friend’s visit, which at the end could create tensions withing the couple. Not to forget that depression, anxiety, and apathy are all additional factors that don’t make the situation any better.
Let me give you a few tips for Parkinson’ disease partners that could make your relationship stronger and healthier:
1. Accompany your partner to each appointment with his/her neurologist: These appointments can be stressful, so having someone else there to listen and take notes is always re-assuring and make the person feel loved despite the disease. A partner may also be more aware than the patient him/herself of whether mood symptoms such as depression and apathy are a cause for concern within the couple.
2. Consider going to a local support group together: This is very beneficial because when you listen to problems other suffer from, you generally underestimate yours, or at least, it makes you think that ‘’there is worse’’ in the outside world. It gives you a different perspective to accept and adapt your partner’s symptoms much easier.
3. Discuss together on how you will inform your kids about the diagnosis: Of course, depending on their age and maturity, informing them realistically is very important without adding drama or hypothesis. Children can sometimes surprise us with their coping abilities.
4. Be aware that Parkinson can affect communication: Because the voice of the diagnosed partner can become much quieter and slurred, some reactions can arise around exasperating questions like ‘’ Can you please repeat?’’, ‘’Can’t you speak louder?’’… Not to forget that depression and apathy symptoms can also contribute to misunderstandings and hurt feelings. Your patience in these moments is the bigger proof of love you can demonstrate towards your loved one with Parkinson disease.
5. Talk between you too about the disease: Don’t let the disease become a taboo or an embarrassing subject to talk about with your partner. You both need to talk about it because you both need to know what to expect and to prepare for it.
6. Make a list of trips or activities that you'd like to try: Due to the motor symptoms of Parkinson disease, mobility can eventually be compromised in some cases. So, sit down together and list the things you want to stop, start or continue to do together given the new situation after diagnosis.
7. Make your partner understand that you have been and you are still interested by him/her with or without diagnosis: Because Parkinson disease can deeply affect the diagnosed person’s self-esteem, demonstrating that diagnosis of the disease is not changing anything to the love you have towards your partner is a priceless source of recomfort and an invaluable lightness.
Hope these tips will help you manage your relationship with your partner more easily. If you still got questions or comments about the subject, please share with me by clicking on the below button.
