My husband has Stargardts
Posted by sallys on 4/5/2012 at 9:30 AM
Hi everyone! I can use some advice. My husband is slowly losing his vision due to Stargardt's disease. He is still working, driving, doing things around the house. Yesterday, he washed the dishes, and didn't really clean them that well. I'm not sure if i should have pointed out that they weren't clean? I just rewashed them without saying anything. I guess i'm trying to get some feedback from others about this. I know its slowly getting to him, not being able to do certain things. I just don't know if i'm going to offend him, or if he would really want to know? Any thoughts?
There are currently 8 replies
Re: My husband has StargardtsPosted by msallison on 4/24/2012 at 6:34 AM
That has to be a difficult situation-to see a loved one losing their vision. Being open and frank is my suggestion. I, too, am slowly losing my vision (due to Optic Nerve Atrophy and Cone Dystrophy). Has your husband seen some specialists? Sometimes, a doctor can approach a patient better than a family member can. A Low Vision doctor could recommend Low Vision training to help him learn to do daily tasks with helpful devices (like contrasting light or black background with white numbers or letters). Even if you do not feel comfortable discussing this, maybe his sibling or friend could approach him in a delicate fashion. Best wishes for how to approach him.
Re: My husband has StargardtsPosted by docsknotinn on 5/7/2012 at 3:16 PM
Hi, I am losing my vision to con rod dystrophy. I have already had to stop driving and working. My husband was, and is, very supportive. Many of my "friends" and coworkers were not very understanding. I know it has been difficult for my husband to watch me go through these things. I can't imagine not having him. And I really can't imagine not being totally open with him. That includes him telling me when I mess something up or if the color of my clothes don't match etc... I suggest you talk to your husband and try to get him to tell you how he wants things to go. I would bet he is nervous about how this is effecting you as much as you are about him.
Re: My husband has StargardtsPosted by Kaytlin on 7/20/2012 at 2:16 PM
Hi I'm losing my vision to con rod distropy I'm only 12 but I whent to many eye doctors that said it was just in my head but then I whent to one last eye doctor and she said I had stargards and I thought my life was over but then I whent to a norther one and he proved it was con-rod distropy but any ways I know I'm just a kid but just tell your husband anything is possible keep your heads up and live life to the fullest
Re: My husband has StargardtsPosted by adbryan on 7/23/2012 at 6:38 PM
I have Stargardts and from experience, I know it is a pain and frustrating to know that your vision is slowly going. However, I would rather be told that I left somewhat dirty dishes instead of thinking I left them clean. You dont know if it was just an oversight, or due to his vision. I feel that having Stargardts calls on you to have good adaptive skills. Everyone has methods and tools they use to compensate for what Stargardts obstructs. If you are always cleaning the dishes after him, he wont know that there is a skill to be addressed. I also suggest that if you bring it up, to bring it up as not being a sight issue, but just as that you found some less than clean dishes by the sink.
Re: My husband has StargardtsPosted by change12 on 10/8/2012 at 1:11 PM
My husband was just diagnosed with Stargardt's/Fundus Flavimaculatus and we go back to the retina specialist Thursday. I am trying to maintain my calm for him, and be strong but I understand where you are. My husband is also driving still, very minimally, and is working too. He can't read any longer and things he's used to doing are getting harder for him. He's 40 and has been struggling for a few years to get a proper diagnosis. I am open and honest with him about my feelings, asking about his feelings and speaking up about his abilities to him. I don't know that I could be any other way. He knows I've "got his back" and will be there no matter what and I think that's more important.
Re: My husband has StargardtsPosted by Bo on 11/25/2012 at 4:55 AM
My husband has stargardt's disease also. We are in the UK. He has been unable to drive for two years now but is still working. We have been going through the same scenario as you with the dishes and I'm inclined to agree that you should say that some are dirty. I know my husband feels really vulnerable and making it a sight issue would hurt him but addressing it as " just one if those things" is ok.
We are struggling with transport at the moment. He has taxi's but a few days a week he insists on walking the 6 miles to the train. I want to help but he won't let me. I feel sick hopeless!
Re: My husband has StargardtsPosted by VisionAware Program Manager on 11/25/2012 at 8:10 AM
Trying to find the balance between independence and asking for help is often very hard for the person who is adjusting vision loss. If your husband has not connected with services to help him with coping with vision loss, he may benefit from mobility training (such as learning to travel safely using a cane and other mobility aids). The RNIB in the UK offers such training and they offer telesupport groups. Here is the link to the section on mobility on their web site: http://www.rnib.org.uk/livingwithsightloss/copingw...
Also RNIB has a special program for family members that may be helpful to you in dealing with his vision loss. Here is the link to that program: http://www.rnib.org.uk/livingwithsightloss/helping...
Re: My husband has StargardtsPosted by ROSE MARY on 1/17/2013 at 10:13 AM
CAPS DUE TO VERY LOW VISION. I HAVE BEST DISEASE OF WHICH HAS TAKEN CENTRAL VISION, GLAUCOMA TAKING PARITHERAL VISION, CATARACTS, DRY EYE SYNDROME, ETC. FIRST AND FOREMOST I DO NOT WANT TO BE TREATED WITH KID GLOVES OR WITH PITY. UNDERSTANDING IS FINE. LEARNING HOW TO DEAL WITH VISION LOSS IS THE BEST THING ANY OF US CAN DO. WE MUST LEARN TO USE OUR SENSITIVITY OF TOUCH! THIS IS OF UTMOST IMPORTANCE. RATHER THAN DOING OVER WHAT YOUR HUSBAND DOES, HELP HIM TO LEARN TO USE HIS OTHER SENSES TO ASSIST HIM AS HE LOSE'S HIS SIGHT. I AM AN ARTIST, AND I CAN SEE COLORS FAIRLY WELL, AND I HAVE TAUGHT MY FINGERS TO BE SEVERELY SENSITIVE. I TAUGHT MYSELF BRAILE IN ORDER TO ALLOW SENSITIVITY TO MY FINGERS. I CALL MY FINGERS MAGIC FOR I AM SLIPPING MY VISION TO MY FINGERS. I CAN FEEL THE SLIGHTEST FLAW OR SOIL, SMELL IS KEEN, AND THE OHTER SENSES DO TAKE OVER, YET LEARNING HOW TO DO THIS AS VISION FADES IS KEY. WE KNOW WE HAVE VISION LOSS, AND THA WE MUST ADAPT TO NEW WAYS OF DOING THINGS. IT DOES NOT HELP US TO DO THINGS OVER FOR US. MY BIGGEST THING IS THAT I AM IN A POWER CHAIR, CAN'T WALK, AND PEOPLE WILL MOVE THINGS IN MY HOME AND I RUN SMACK DAB INTO THEM. PEOPLE WILL STAND CLOSE TO MY 300 LB POWER CHAIR, AND I CAN'T SEE THEM, AND THIS IS DANGEROUS. I'VE GOT TO FIGURE OUT HOW TO WARN OTHERS TO STAND BACK FROM MY POWER CHAIR. GOD BLESS YOU AND YOUR HUSBAND, AND I TRY TO USE MY FADING VISION AS EMBARKING ON A NEW JOURNEY. REGRESSION TO PROGRESSION. LOVE THE 12 YR OLD'S ATTITUDE ABOVE, BLESS HER SWEET HEART.
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