Hello again, my husband is clinching his jaw and I am wondering is this because his jaw is getting hard to open? He still can talk a little but now all he does is grunt at me.
I feel like all I do is feel sorry for myself. We don’t go out much because it’s hard to take him out. He is wheelchair bound and then when we get in the car he try’s to open the car door while driving down the road. I feel like he doesn’t want to go out because it’s to hard on him. I just hate the thought of him suffering, I just wish he was free from this horrible disease. Thanks for listening.
My husband's jaw got progressively more tightly clenched over time; it's a relatively common symptom of PSP. The muscles in his neck also got tighter and tighter, which I'm sure contributed to making it harder for him to open his mouth. I used to massage his neck muscles a few times every day. I think it did help to ease the muscles a little, plus I'm sure he enjoyed having those stiff muscles massaged, and it was a bit of relaxation and touch during the day.
It's so understandable that you get down andand feel a little sorry for yourself. We've all been there before! It's such a tough road to walk, but try to take things day by day and sometimes even minute by minute.
As far as opening the car door while driving goes, I never experienced that. It's possible that it may be his impulse control that is causing that, rather than him not wanting to go out. If he's still communicating, are you able to ask him if he wants to go out or not?
Is his jaw clenched all the time? Have you tried stroking under his chin or massaging his face where the jaw hinges? Sometimes found this helped but usually just had to wait for the jaw to relax. How's his eyesight? Mum suffered from double vision and that made traveling in the car unpleasant as she thought the cars were coming towards us on the same side of the road, looking like we were going to have head on collision. We had to black out one of her lens to help, but as time went on, her eyes took time to focus, so again car journeys became unpleasant.
I don't see why you think you are feeling sorry for yourself. You have identified problems your husband has and you are trying to find solutions and asking if anyone has advice. That's a really positive thing to do. You obviously care deeply for your husband and want the best for him. Don't feel guilty for sometimes wishing things were different, it would be unnatural not to.
Hi penny1956!These are our experiences on the subject (PSP 8,5 years):
Muscle cramps, spasms and stiffness:
We have not detected major episodes of muscle cramps or spams. In the daily diet we include in the breakfast a quantity of fresh cheese and whenever the circumstances arise we expose the patient to the sun discovering legs and arms.
We combat stiffness in hands, arms and legs with gentle and persistent massages. We have read that the drug "Baclofen" can help in some cases. Ask Physician.
*Socialization: Almost every afternoon (before COVID19), social activity: cinema, city walk, show, museum, conference, meeting with grandchildren, snack with friends, parties, etc. After these events she needs to rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks for exercise as well as to socialize.
•Journeys by car must be adapted to transport the patient and the wheelchair. High seats similar to Citroen Picasso are advisable.
•Difficulty in following the cadence of a normal conversation, being treated as a child, or being the object of special attention because of his/her illness and not seen as the person who is locked inside that jail that is the PSP, produces feelings of frustration and humiliation. You have to try to avoid those situations but keep attending social events because, although usually resisting to get out of the routine, at the end the person with PSP normally has a very good time.
•In the event of trouble to handle the food (spaghetti, salad, etc.) or in a restaurant with companion who are NOT relatives (for instance: former university colleagues, etc.) and due to the velocity in serving meals, it is very likely that a person with PSP will need help to avoid a severe delay and therefore an uncomfortable situation. This can create feelings of humiliation. Next time we must try to select the type of food and attend meals in which the rhythm could be very flexible.
•Some patients with PSP/CBD gets stressed when he has too much stimulus whether it be audible or visual. Crowded public venues for intance. Multiple person conversations that progress too quickly make anxious some patients. The stress manifests with uncontrollable laughter & crying. At this situation an advice: "Simplify, simplify".
•Over time the cleaning of teeth with an electric brush becomes very difficult. Rinse the mouth is also a challenge presenting a tendency to swallow the liquid generating coughs and choking.
When the classic tooth cleaning system fails we have adopted a very soft bristle
brush (for surgery, brand VITIS) and a special toothpaste for the care of the gums
that produces little foam.To this paste without foam we add a little paste containing
Chlorhexidine.
To clean the mouth of pasta we have discarded the brushes that produce a jet of
water under pressure because, very often, they produce coughs and choking.
Dear Penny, hey, there is not a person on this planet that doesn’t wish they were in a different life, no matter how their’s is going. As for you, or any carer, life is shit! Of course you want it to be over, especially for your loved one. PSP is the pits. From what I have read, you are coping, being very positive and it’s obvious you have your husband’s best interests at heart. I know you think you should be doing more, but I promise, there isn’t any more you can do. Except perhaps, slow down at bit, get more help. Give yourself a little more “Me” time. Nobody can look after someone with PSP full time, without time off. Lots try and it always ends in tears. Your husband WILL suffer a lot more, if you don’t take care of yourself. As for the car, see if you can get a kiddies lock on the door!
My husband has this problem too and it particularly affects his oral hygiene - it is almost impossible to clean his teeth! He can't do it himself, and his teeth clench when I try. We have had good advice from the Speech & Language Therapist re using a soft, baby toothbrush, non-foaming toothpaste (spitting is also a problem), but with little success as yet. She has also advised 'de-sensitising' and we are working on this, but I think it will be a slow process. Meanwhile, goodness knows what is going on in his mouth! Have a look at this link, mouthcarematters.hee.nhs.uk.... It's worth a try!Yes, a dreadful disease - it affects everything - eyes, choking over drink/food, personal care, walking, sleeping. And every day (hour?!) is different - I find that particularly challenging. I am always questioning whether I should help or let him try for himself (inevitably that leads to a fall!). "I don't understand!" is something I say all the time!
Covid hasn't helped, but we are really grateful to our community neuro team who have been there for us throughout. At the end of the day though, it is down to us.
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Problematic people
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So sad
