My wife was diagnosed about a year ago but has had symptoms such as voice problems for several years. Her social anxiety is extreme; she can barely tolerate visits from even our children. Has anyone else experienced anxiety to this level? We’ve tried medications but have not found anything that helps so far
T.
I am so sorry to hear this. I’m sure this is making it even harder for you as the carer. PSP can have quite significant behaviour impact due to the parts of the brain affected. What medication has been tried?
Hi Husbandof !!
I agree with "messier". PSP usually offers a significant variation in the different symptoms as well as a different course in each patient.
Most people only take medication for symptom control.
Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case. Ask physician.
(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.
Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.
A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:
healthunlocked.com/psp/post...
Kevin_1:
healthunlocked.com/psp/post...
Hug and luck.
Luis
My wife in the early stages also experienced anxiety and was becoming more socially disengaged. She transformed from a social individual to an anxious person and stopped enjoying social events. Initially she was diagnosed as depressed and took cognitive behaviour therapy which helped for a while.Unfortunately, this was an early sign of PSP and then began the falls and less of balance. It was at this time we were referred to a neurologist and received the devastating diagnosis. I would suggest making the most of what you have together day by day. Get a good neurologist to manage the arc of this cruel disease, become familiar with the progression of PSP so you can better manage her care, get you wills, power of attorney dealt with, including a discussion on medical assistance in dying.
I don't want to sound grim, the care of a PSP afflicted loved one requires careful planning through each stage.
Stay strong.
Sadly yes I see similar with my mum, she was also a very sociable person, she is always so happy to see us when we visit but it's obvious after an hour or so that it's becoming too much for her. We try to visit in smaller groups or individually, keep the conversation light & slow paced and leave plenty of time for her to talk or answer as this all prevents brain overload.
I can now tell when she is starting to get overwhelmed & either leave her for a while to do some housework for her, just watch TV with her or pamper her with a relaxing facial - being there without over stimulating her seems to reduce the anxiety.
I did find it difficult at first as I wanted to spend as much time with mum as possible as I'm well aware this cruel disease takes a bigger part of her each day, but 2 years since diagnosis anytime we spend together is precious & so I have just learned to follow her lead & visit for as long as she can cope.
It's difficult to navigate the personality changes PSP brings but we as a family are committed to enjoying the things mum can do now, not worry too much about the things she used to do.
I'm sorry to hear your wife is struggling with anxiety, it must be very stressful for you both. My husband went through a long period after his diagnosis being worried about meeting people - he thought he was "embarrassing" and I know it was difficult for him to see the reactions of old friends and family when they realised how much PSP was affecting him. He was also upset about some of reactions from strangers assuming he was drunk or shouting "what's wrong with you".
Eventually he decided to get some loud t-shirts and hats made up that say "I have PSP". Then he'd point to that message if he felt under any kind of pressure...
I had to initiate visits and outings and though he would often be anxious (and this could take the shape of refusing to get dressed, or behaviours leading to falls) he would usually seem energised after any social contact.
I cannot recommend any particular drugs, but I've found the pressure of conversation tends to make things worse, as does "social eating". What works for him is simple games, tossing a ball about, people telling jokes etc, that seems much more comfortable for him. Every family is different, last year we had relatives visiting a few weeks before Christmas and everyone got involved in decorating the tree - my husband really enjoyed the chatter that came out of a shared activity, far more than attempts at serious conversations.
Another thing that helped for us was the LSVT LOUD trading (speech therapy) that gave him more confidence to meet up regularly with old mates over a coffee.
I hope you find things that work for you and your wife. The loss of speech in particular can be very isolating and though energy levels will vary, having contact with others is so important for happiness and quality of life.
Hope & hugs 🌻 🤗
PS if there is a PSPA support group in your area, it might be useful to try to meet with others in the same situation.
Hi here, so sorry to read about your wife. My dad has experienced extreme anxiety for sometimes now. He used to be a very adventurous person but now he can't even be alone for five mins even if we are making him tea. Speak with the gp or palliative care worker about anti anxiety meds. I'll be honest, it hasn't really worked for dad but everyone is different so may help your wife. You could also look into some kind of talking therapy, to also see if that can help her cognitively and with the anxiety xxx
Husbandof
Ruth has been on Sertraline since diagnosis in 2016. She started on 50mg a day and has asked to increase it each time she starts to feel down - she is now on 200mg. It seems to work well for her and there are no side-effects that we have noticed. It takes a couple of weeks to take effect. This disease is bad enough without feeling anxious or depressed on top of it.
Richard 🙂
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