Life with FXTAS
By Terri and Vince Corcoran
Vince has had FXTAS since 1999 at least, with subtle symptoms even before then. We were married in 1999; shortly after, the falling began, and symptoms gradually worsened. It took till 2004 for the FXTAS diagnosis. Since then, I have tried to keep Vince healthy, despite the horrid brain damage from FXTAS which has greatly impaired him physically and mentally.
At this point in 2011, he walks very little with lots of help, talks very little, and spends the days in his recliner with the TV, looking at magazines and sometimes playing with put-together toys that I give him to keep his hands busy. What is great is that he is very content and peaceful; never complains; and still tells me he loves me. It’s been the most challenging marriage to say the least, and very sad that it was never “normal” for us; but we have a strong marriage, despite it all, thanks to God, Dr. Randi and Louise Gane for their support, and my support group, the Well Spouse Association for spousal caregivers.
My greatest hope is to care for Vince at home until the end; I have home health aides 10 hours a day to help. We have just enrolled in hospice care due to eating challenges, but Vince otherwise is strong and healthy; I go one day at a time, making whatever adjustments we need, depending on God’s guidance. Tonight we had pureed pasta for dinner – Vince ate it (and so did I!). Love is eating pureed food with your FXTAS man! It has been a very rough 12 years as I’ve adjusted our lives to accommodate the worsening symptoms, and have had to be the “man of the house” as well as everything else in our lives; but I’ve certainly seen miracles and lots and lots of love in our marriage.
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Truly beautiful story- so much love
You are truly living God’s call. Your husband certainly married a human angel.
Thank you for the very kind comments. I attribute everything to God Who has really shown me His presence through all of this. And were it not for the challenge of FXTAS, I may never have built a faith in God. So I guess God knows what He is doing:)))
terri, thanks for sharing with others, Vince has a special person/wife who dedicates her life to him.
This story blessed my heart. You are an example of a wife with TRUE love. God bless!
Beautiful story! And you are a beautiful person. I, too, have FXTAX, since I’m a woman the symptoms are not so serious. Are you familiar with any support groups? I would love to be in contact with others who have it. Joy
Did you participate in MIND research on FXTAS using memantine?
Hi Terry & Vince. Have just read your story. I am hearing your story loud & clear. My husband has been told he has Multiple Systems Atrophy. He has just turned 55. He to watches tv or reads all day.
His speech is getting worse & he can hardly get around by himself.
He is using a walking frame or a wheel chair. This is a cruel thing to see your loved one go through. Everyday is a new day & we just do the best we can.
Betty,
Do you have Fragile X in your family? If so, maybe your husband has FXTAS. My husband was told by one doctor that he had MSA, because he just didn’t know – that was our 4th WRONG diagnosis, until the 5th doctor diagnosed FXTAS. I’m sorry for your trials; I do know how horribly difficult it is.
My father-in-law, passed away last year due to complications from what doctors finally said was a form of Parkinson’s Disease. They never seemed clear on the diagnosis however. His face seemed to change and he had a glassy stare much like the photo of your husband. What have been his eating “issues”? we also had to puree food in the beginning. I will pray for you, I know how difficult it is to watch someone you love go through this type of illness.