Hope

Penny

Hope

Penny
(Editor's Note: We welcome Penny, who cares for her husband, to our blogging team today. Penny also moderates our monthly support group for those who care for a family member who had a stroke on the first Wednesday of every month at 7 p.m. ET (6 p.m. CT, 5 p.m. MT, 4 p.m. PT). You can connect with Penny on her profile page: @pgoree.)

1001150753To know me is to hear me talk about aphasia. I love talking about aphasia. I don’t love aphasia but have been touched by it two times in my life. My husband Tim, at the age of 50, and then three years later my good friend Susan at the age of 52, both had strokes and were affected by this communication disorder called aphasia. Its impact has been so large on my life, when I took classes at our local college after my husband and friend had their strokes the students nicknamed me the Aphasia Lady because every time we were given an assignment to discuss a topic, I did it on aphasia.

Who came up with this word? I heard a woman once share it sounds like a kid asking for apple sauce and pizza at the same time. For any speech therapies that may be reading this I know there is a meaning behind the word. The word aphasia comes from the word ἀφασία aphasia, in Ancient Greek, which means "speechlessness", derived from ἄφατος aphatos.

I've seen Tim, Susan, and so many others we’ve met on our journey struggle to communicate in the face of this disability. Therapy is expensive, results are slow to come, and generally take longer than insurance is willing to wait. It can be easy to lose hope.

Every one of us needs HOPE. The simple definition: to want something to happen or be true and think that it could happen or be true. I learned a phrase from Denise Brown that I use all the time: “You redefine hope as often as you need.” I know for Tim and I we have always had the hope that we could get him the speech therapy that he needs for his aphasia, to make a meaningful impact on his speech. After sixteen years, he’s finally getting that therapy.

An aphasia community center has opened an hour and a half from our home where he gets therapy twice a week for five hours each day. When I share that we have to drive that far people freak out, but did you know that there are only a few of these centers in the U.S.? They work in groups practicing their speech and the community that I witness already in the first three weeks has been amazing. They cheer for each other when they say a new word, they try things that they have not tried since their stroke because they see someone else try. I have had several people tell me that Tim’s speech is improving already. After all this time, this is what we’ve been waiting for.

After sixteen years, we found what we were looking for. Never stop hoping!