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    • CommentAuthorLindylou*
    • CommentTimeJan 1st 2017
    Has anyone had experience with "grasp reflex"? My partner has this reflex and it is impacting us more and more in her recent decline. She grabs hold of a railing, grab bar, chair back, an item of clothing or my arm, finger, or thumb and cannot let go.
    • CommentAuthormyrtle*
    • CommentTimeJan 1st 2017
    Lindylou, Your spouse's recent decline is so striking that I wonder if she has a had a small stroke or something like that. Maybe the nurses on this site recognize this symptom.
    I thought I commented, but maybe forgot to add it. I did not see this with my husband, but I think I remember patients doing this sometimes--demented patients--who were confused and disoriented.
    • CommentAuthorCharlotte
    • CommentTimeJan 1st 2017
    I think this has been talked about long ago. Most likely the brain is not able to communicate with the hand to release. It is common. As the brain dies and connections are broken things happen. :-(
    • CommentTimeJan 1st 2017
    It was the same with Eric. I had a lot of trouble getting him out of the car He'd grabbed onto the door or roof and wouldn't let go.I don't remember this manifestation lasting, but then I had to give up taking him anywhere.
    This became a huge problem as my husband declined. It is very common and is an infantile reflex which shows up late in the disease. Also, I think it may be do to unsteadiness and fear of falling as well as issues with sight. Touch is the one sense that seems to stay intact and by touching and grasping it may give the patient some feeling of stability. It is hard to imagine what chaos and fear they must feel when most of the sensory input is distorted.

    Lindylou, your partner seems to be declining in a way that my husband declined: sudden, steep and with daily losses. It is almost incomprehensible to keep up with everything. From what I read, you are doing a really outstanding job in keeping on top of things and problem solving all. Kudos to you.

    You seem to know that there is a tipping point that is fast approaching. Stay aware. Do you have any contingency plan if you should fall ill for a few days?
    • CommentAuthorLindylou*
    • CommentTimeJan 1st 2017
    She's had the grasp reflex for a month or two. But it is impacting things way more right now. She cannot use a bedside commode because as soon as I help her release one hand, and go to help her with the other, the first hand is back holding on with a death grip. In the bathroom when this happens she is in a standing position, only grasping with one hand, so I sing - two to three Christmas carols at present - until she or she with me helping releases her hand and we can leave. We've got stuck getting in and out of the car too. Not planning to take her anywhere in the car anymore except for Tuesday and Wednesday to get to daycare. The van will start bringing her on Thursday.

    Its a long three day weekend for us. She is now unable to walk without physical assist, but she continues to have to walk. Then at times, she forgets altogether how to walk. I have been able to sit her down when this happens. Am prepared to sit her down on the floor if needs be and find help to get her up. At least she is not walking as far, and is resting longer. But I have been on standby continuously for two days now. One more day to go. Glad to have had the Christmas Lodge for respite.
    • CommentAuthorWolf
    • CommentTimeJan 1st 2017
    It's always with some pain that I read your experiences because there are always deep resonances with mine.

    It's the pace first of all where I had a saying that no three months were the same. Dianne didn't do the grasp reflex but she did steadily forget how to walk and we were frozen on a particular surface or square of color numerous times while I tried to get her to just take the next step. One day she really didn't move off the white square in the supermarket and it took over ten minutes to get her to focus on something else. That was the last time I took her shopping. I can feel tears welling up.

    She did her own things as she lost more motor control and lost more grasp of what was happening around her. She went from one room grate to another pulling them out of the floor and moving on to the next one. She went through a period where she stalked me. Looking at me like a zombie from around the corner. I don't think we exchanged a single short sentence the last year plus.

    The most painful memory I have among a throng of them is that last time she kind of danced a little to her David Bowie song after not doing that for a long time. That was the week before I put her into respite to get a break. That was the last time she was home.

    It's all so horribly sad and painful just emotionally between us and our partner - never mind the toll on us the disease exacts in addition to ripping apart our emotions.

    I've looked deeply into my heart and I've walked into every memory and every thought I've had about this start to finish. I give this freely. I suffer the memories freely. I'm glad I suffered so much with her and I'm good with how the memories hurt and sadden. It's all real and that's why it really hurts and I am very satisfied that it all was as good as it gets.

    Your partner is losing everything along with what you are losing; but, in one way she is quite lucky. She has you.
    • CommentAuthorlongyears
    • CommentTimeJan 2nd 2017 edited
    If you go to this site, it describes the Fisher Scale of seven stages of Alzheimer's. Scroll down to stage 7, and there is a paragraph on the primitive or infantile reflexes (sucking, grasping, Babinski) manifested by patients in this stage. Grasping and not letting go is very common. It is problematic because adults often still have enough strength to unconsciously hurt the person they are grabbing on to. The more agitated the patient becomes (as the person grabbed is pleading to "let go"), the tighter the patient holds on.
    • CommentAuthormyrtle*
    • CommentTimeJan 3rd 2017
    marche and longyears, I am so impressed by the knowledge you have about medical matters. The Fischer Center's website seems to be much better than the Alzheimer's Association's site.

    I'm wondering if my husband is exhibiting this reflex. When I wheel him into an elevator or through a door, he will sometimes grab the door jamb and I can't get him through. I thought this was intentional but now I see I might be a reflex. I looked at the category of "Palmar Grasp Reflex" on Wikipedia (which the highest level of science I can understand). After describing the reflex in infants, it said, "The reverse motion can be induced by stroking the back or side of the hand." Does anyone know if that is correct? It would certainly be easier than trying to pry his hands off the door jamb.
    • CommentAuthorWolf
    • CommentTimeJan 3rd 2017
    longyears, it was definitely just the changes in color that could make her freeze. It must be terrifying to see no where to put your foot while being told everything is perfectly fine. That's not true either, because no one will ever know on that day she spent so long being frozen how much of any of the parts inside her were functioning still.

    The one thing I saw in places I was surprised by it was the conviction that she was still in there right as rain and it was the machinery in between that wasn't working. That's not true. With a randomly rusting brain, there is no clarity of presence anywhere. Not like PD patients who have nothing wrong with the parts of their brain they use to be themselves with - it's getting the body to do anything coherent that is the manifestation.

    I've heard that about singing. It works in some other things too. I've heard of it working in Tourettes syndrome.
    Myrtle, you are correct about the reverse motion of the grasp reflex. Sometimes, but not always, you can get the patient to relax the grip by stroking the back of the hand. The other things that you can do are to 1) give the patient a towel or squeeze toy to hold onto before they might grasp something, 2) time and distraction to lessen the grip (this is hard to do if you are in a situation requiring a bit of a rush or already frayed nerves), and 3) place something sweet in the patient's mouth - that often is a pleasant distraction.

    As for Parkinson's, there is a program where PD patient's are taught to box called Rock Steady Boxing - just amazing!

    Also, there is a video of a PD patient riding a bicycle that is just unbelievable.

    These links show that PD targets specific areas of the brain and preserves others, while AD is more widespread.

    Wolf is correct about singing - often stutterers can sing flawlessly.
    • CommentAuthormyrtle*
    • CommentTimeJan 3rd 2017
    Thank you, marche. That is excellent information. I'm going to try these methods when it happens again.
    • CommentAuthorLindylou*
    • CommentTimeJan 4th 2017
    Thank you longyears, I will do some further reading. Thank you for the research. I will follow up on that when I have a free moment. That may be Friday, if I’m lucky. :/

    So far, my understanding is that there is no treatment, but I had wondered if others in this wise community had come up with solutions. She can be quite literally crushing my hand and saying she does not want to hurt me and be unable to either let go or realize what it is she is doing. So no bedside commode because I cannot get her off it - we must do long walks to the bathroom at midnight. And I sing songs in the bathroom and wait for her hand to release of itself. Spending much more time in that room than I like, but oh well.

    I feel this reflex is a severe continuation of her carrying and moving things around like she has done for a couple of years, but now she can’t let go. She reaches and holds on tight until somewhere unconsciously her hand wants to do something else, like touch another object for balance or something. I used to be able to get her to release by saying show me your palm, but now she does not comprehend that statement. Rubbing her hand does not help my partner.

    I agree with you, Myrtle. I do not think there is intention involved to prevent going through doors or leaving. It certainly does not mean your husband is trying not to go someplace. This reflex seems to be so primitive, like baby primates holding on tight to their mothers when they leap from branch to branch.

    Marche, I will try putting a towel in her hand. Never thought of that. Trouble is, she does have to help pull herself up from the toilet so I don’t have to lift so much. Maybe I can put a towel on the grab bar and it would be easier to get her to release? Not sure the candy idea will work for us, but I may give that a try as well.

    You guys are great.
    Lindylou, your whole situation just does not sound very safe. I'm wondering if anyone in the PACE program (nurse? case manager?) is discussing a higher level of care.
    • CommentAuthorLindylou*
    • CommentTimeJan 4th 2017
    Elizabeth, I think of the old expression "the straw that broke the camel's back". Each little thing that comes my way, I think "I can do that". Which is true if that were all that I was doing. It is just that it gets added onto everything else I am doing. I am usually holding together pretty well, but today I'm in the "why me?" stage, rather than the "why her?" stage.

    On the plus side, I have had an aide coming 7 mornings a week, and tomorrow I start getting an evening one as well. My partner is going to begin going to daycare on the van tomorrow as well. This should help significantly.

    I appreciate the concern expressed by you all. Up to recently I felt my self-protective instincts were working well. And they were. But we can't go to church, and we can't eat out. Both things that were important to me. I've told my friends who come here for supper, that supper will now be hors d'oeuvres set out on the coffee table, because my partner's eating skills have devolved.

    Fortunately I have a week's respite starting next Thursday. Truly needed. Perhaps I can see then what is going on rather than just being in the middle of it.
    Take care of yourself, Lindylou, because what will become of her if something happens to you?