by David Butler
Gail has always been an active, outdoors person. She loved hiking, camping, hunting, fishing, skiing, gardening and working outside. We joined the gym after we retired and worked out 3 days a week for almost 10 years. When her balance on the machines got to be a major concern we gave up that part of our life. Giving up driving was also traumatic for Gail. It was giving up her independence after all of these years.
We first noticed problems about 7 years ago, in 2006, when Gail started to have a hesitation in her speech. Gail was 62 years old at the time. The neurologist didn’t have a clue as to the problem. The speech pathologist that we were referred to said he’d seen similar symptoms with patients that had a small aneurysm in the brain stem. Having no other answers, we accepted that as a diagnosis. We needed something to tell our family and friends to explain Gail’s problem.
About 3 years ago the balance problems started. When Gail was helping put a roof on one of our out-buildings we tied a rope around her waist to prevent any serious falls. From then on, there were a lot of serious falls; broken collar bone, fractured orbital socket, stitches, sprains and bruises. All of the x-rays, MRIs and scans didn’t provide any answers.
Sight became a problem around the same time. She didn’t want to go to the store because she said she couldn’t see anything. We went to the eye doctor who made her a pair of glasses that did no good. I wasn’t smart enough to figure out that glasses wouldn’t help. Her ability to see up and down was the real problem. She can still see straight ahead if she’s not moving, the object she is looking at is not moving and she has her glasses on. Otherwise things are blurred. Her left side continues to contract and she has little coordination in her left arm and leg. The combination of the poor eye sight and the contraction of the left side make it difficult for her to walk without assistance from another person.
The swallowing and choking problems started shortly after the other problems. I wonder sometimes in the middle of the night if she is going to make it through the gasping and choking session she is having. So far she has.
We are now being assisted by hospice in Gail’s care. I am her caregiver and I have the satisfaction in knowing that if something happens to me, she will continue to have care. The CurePSP website has given me a lot of information and answers. The DVDs and pamphlets have been very helpful in understanding the disease. I have printed off the “Some Answers” publication a number of times to hand out to doctors, nurses, aides and friends.
About 2 years ago, Gail knew she was going to die even though everyone told her she wasn’t. She started writing all her memories down, from as far back in early childhood as she could remember. By last spring, she had gotten up to 1993 before she lost the ability to put her thoughts together. This Spring, her sister had all those memories made into a hardcover book for her. It is in Gail’s words and also includes some pictures from her childhood and later years. No matter how rough it was for Gail, she cared enough for our daughter and I to leave a part of herself for us.
Last July, after all of these years, a visit to the neurologist finally gave us the answers we were looking for – PSP. The terrible news made Gail happy and relieved. It wasn’t all her imagination. She actually had something to blame all of those years of misery on.
Her speech continues to worsen. She can still write some and even though she leaves a lot of words out we are able to communicate. We also use flash cards for common requests.
Most days Gail knows who I am. I tell her every morning who she is and who I am. I’m sure sometimes it doesn’t register but only for a short time. We quietly celebrated our 51st wedding anniversary this month. We know there probably won’t be any more, but she will continue to live in my heart.