I Can’t Hear My Spouse with PD - What Can I Do?

Recently, in a weekend retreat with both patients and caregivers the two biggest complaints I heard from both parties were 1) my significant other gets mad at me because I don’t seem to pay attention, and 2) my spouse never listens. I chuckled because my husband and I have the same problem.

During the retreat, many asked me what we did to cope and if we had any advice or techniques used to improve communication and hearing at home. "Of course", I chuckled! The fact is that I know entirely what is like to not be able to hear or be heard since my husband experienced an acute loss of neuronal hearing almost a year ago in one ear. Life has become more challenging since then. Conveniently, he lost hearing on the right side so if he is driving he has a good excuse not to listen to me while I sit on the passenger side. On the plus side, he now sleeps better because my talking in my sleep does not disturb him.

Hypophonia as a Parkinson's symptom

Hypophonia - soft voice/speech - is one of the biggest problems with Parkinson's disease (PD), and it does not have to be severe in order for it to cause problems. In fact, the person with PD may not even be aware there is a problem, which was my case until everyone in my family started claiming that I never told them about such and such. It began with my husband saying something, so of course I assumed he was not listening. Then, my daughter said something. Finally, when other members came to live with us, they too started complaining that I never mentioned things. I knew then that I had a real problem.

This was a shock to me because, being Hispanic, I can usually speak as loud as the rest of them - well at least for a limited amount of time - before I lose my voice completely. Otherwise, most people comment on how strong my voice is for having PD for over a decade. But, apparently, Parkinson’s does take its toll on all of us... even on so-called “good days". Now I have not only became more aware and have to make a concerted effort and have had to increase my medications, but I also have had to start speech therapy to strengthen my voice projection.

Voice recognition in my car

Besides my family getting upset when I ask if they followed up on something I requested, I have often become frustrated with my own car system which is much more sensitive to detecting fluctuations in my voice. The slightest decrease in volume prevents me from using my voice recognition system to dial a phone number. Being aware of these seemingly small decrements in volume has helped me make note of the problem and be more proactive in finding a solution.

Solutions to soft speech

So, what are some of the solutions I have discovered that work for me and my family?

First and foremost, we need to speak with our loved ones' physicians about adjusting their medication. You and your spouse may also talk to the physician about collagen injections as a way to strengthen the vocal cords.

Second, we need to ask about enrolling them in a speech program to strengthen their voices. Then make sure you practice with them at home and help them complete their workbooks at home.

At the moment there are two equally qualified programs that can serve to improve the voice of someone with PD.

• LSVT (Lee Silverman Voice Treatment)
• SPEAK OUT

Third, besides noting that it happens, pay close attention as to when it occurs and ask your loved ones to do the same.

Does is it occur randomly or at a particular time of day? If it only happens after meals perhaps your spouse may be suffering from reflux (a common problem in PD). This will help you and your physician find the best treatment. If sporadic, you may benefit from a rescue medication like the newly FDA approved medication Inbrija (levodopa inhaled powder).

Fourth, besides the above medical solutions there are a couple of practical things which have helped me and my family.

• Sitting in close proximity and getting their attention either by touch or some visual cue and asking to reiterate conversation particularly when important information is being exchanged.
• Start by saying “I need your full attention”.
• Some caregivers have said that they use an Echo Dot to communicate from one room to another (plus these types of machines are extremely sensitive to voice alteration, so they can serve as a guide or cue to speak louder or take medicine).

In conclusion, it takes some effort to stay connected but being aware of the problem is the first step. Working together with your family and physician to find the best solution is the next step.