HIKE SIXTY-ONE

Barn Bluff Red Wing hike with FTD friends

While I was staying at the Anderson Center, three people from my frontotemporal dementia (FTD) support group in Minneapolis traveled to Red Wing to hike with me. It was really fun to show my guests my wonderful work space in the old attic where I had been living for the month.

It is a relief to have people that I can talk to about this horrible disease! I can now say out loud that my husband has FTD! When he was first diagnosed, I remember being embarrassed that he had a mental health illness, and I was afraid to tell anyone. I wished in a sad way that he had cancer because then we could at least try to fight it. People understand cancer. People know what to do and what to say. They wear ribbons, they wear pink and they do huge walks hoping their effort will fight the disease.

There is no fighting FTD. It is a lonely thing to get stuck with for both Barry and me. When a person is first diagnosed, it is hard to tell that they are sick unless you notice a change the person’s eyes. I can now spot FTD eyes instantly and recognize the shuffle in their walk. Many people are afraid and uncomfortable around someone with FTD. I felt the same way for a long time!

When people who are on the same journey get together, there is so much to talk about. We all understand the frustrations and struggles! As we hiked the famous Barn Bluff on a beautiful fall afternoon, our conversations naturally revolved around our spouses, all of whom are stuck with stupid FTD. Believe it or not, we had lots of laughs, too, about things our spouses have done lately. We talked about the tough times as well. I am amazed at how strong these people are.  Were they this strong before? Before FTD came into our lives, we were all just living our lives as we thought we always would.
red barn bluff
Without the tragedy of FTD, we would never have met and I am thankful for these new, supportive friends. We talk a lot about what is hard for others not affected by FTD to understand. We all wonder when it will be over. When will our loved one die? Then what will we do? All four of us on this hike are waiting and waiting and wondering what it will look like at the end. At least we have each other to share our feelings with, to share a beer or hike together to the top of a bluff on a spectacular fall day.

After hiking up the bluff, we stopped for beer and dinner at a local spot. It really meant a lot for me to have some of the gang visit during my month away. I wonder if I really just needed someone to understand why I was spending my “waiting time” living and working away from Barry for four weeks. I needed a “thumbs up” from them. And they gave me their approval without hesitation. After dinner they headed back home, and I went back up to the attic to work and wait.

If you have a loved one suffering from FTD, check out the Association for Frontotemporal Degeneration website to find support groups in your area. http://www.theaftd.org

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3 comments on “HIKE SIXTY-ONE
  1. Linda Cook DeVona says:

    You all look so vibrant that it’s sobering to realize all your spouses are affected; it makes one realize FTD could happen to any of us or ones we love. I’m grateful you are sharing your experiences and broadening our understanding and empathy. I’m glad you have some people to understand firsthand some of what you are dealing with!

  2. claudine coughlin says:

    Nancy, I am so happy that you have found such nice friends and that you have someone that understands exactly what you are going through. Support groups are so important. Take care and I hope your holidays will be wonderful. Keeping you in my prayers. Fondly, Claudine

  3. Nina Crittenden says:

    Dear Nancy,
    Thank goodness for friends, especially for those who are walking along the same path. Sending you and everyone touched by FTD all my best wishes.
    xo Nina

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