Claustrophobia & PSP - 18mths post diagnosis

[crab2093]

Ch is getting claustrophobia every day now. Is this the tau in action? It almost make him go crazy. A couple of things seem to set it off. One is heat (we live in the tropics - hot days & nights & muggy atmosphere) or was it the confusion which came this afternoon when he couldn't understand why the electric scooter didn't engage the motor with a chug and a roar. Even when I explained he did not really believe me (he used to be good with motors - could always fix them). This confusion made him angry , sullen and unresponsive. Then on came the restlessness, more anger (this can be scary). I convinced him to take half a calming tablet and he eventually went to sleep in the air conditioned room, Anyone else experienced this?

[Kevin_1]

Hi crab209

It sounds like the care situation your in is fairly tough. I'm so sorry about that.

The confusion, yes that can occur. As you say the heat might not help.

I've not heard of claustrophobia being a symptom of PSP. Could it be anxiety? Sometimes a low dose of something like Citalopram (daily) can help with anxiety. Just enough to take the edge off. Might be worth talking to your Dr about this.

Sorry I could not help more.

Best to you both.

[Hidden]

Oh Yes! Memories... my Mom had her moments & such a hateful way with angry words. Those words could cut through my soul but l chalked it up to the horrid PSP.

May l ask if he was claustrophobic before being diagnosed with PSP? He have been & was able to talk himself through each ordeal without anyone knowing. I did this for years but no longer keep it a secret.

I do believe the frustration of not understanding is normal. I am so sorry you are dealing with this. I think Kevin's suggest about talking to the doctor is wise.

Sending you & hubby gentle hugs... Granni B

[rriddle]

As Kevin said, "yes" to confusion and anxiety. I'd add, "yes" to dementia. "No" to claustrophobia.

By chance does he have a drop in blood pressure upon standing? Or "night terrors"?

[crab2093]

Thanks for all your replies. The claustrophobia has been like a "Ive got to get out of here" or "I've got to move" sort of thing. It can happen anywhere, in a cafe; in the car (if he senses that I'm not sure where Im going; at a friends house; at the dinner table and so on. Yes he had had it once or twice years ago but it is every day now he is in the wheelchair, not so many falls now though. We have spoken to the GP about this and Myrtazipine was suggested so when he gets bad at night I get him to take a half tablet. He gets into such a stressful state ... yes maybe a panic attack of some sort if we do nothing. No drop in blood pressure.

[HilsandR]

Hi Crab 2093, I get why you use the word 'claustrophobia' relating to your husband's behaviour as I identify with a similar situation with my husband but i saw it as confusion and frustration. Confusion became a big part of his symptoms; we might be sitting having dinner, alone or with friends, when he would want to leave the table as a matter of urgency. In that moment he would be confused as to where he was and needed to get out. That could happen at any time of the day and in any situation. Then of course, he had lost the ability to do the most simplest of things so the anger would set in brought on by pure frustration. I could handle the anger and remaining really calm with him in those situations (easier said than done at times) usually won the day but his tears would always bring me down. He was on anti anxiety meds but PSP was not daunted by them and always go the upper hand. My husband lost his fight with this dreadful disease in October 2018 after years.

I hope this helps; everyone with PSP will be unique with their symptoms and often odd symptoms could be totally unrelated to PSP. Sadly, carers usually end up knowing more about the illness than the medics but always worth mentioning anything new at appointments or as in my case I was able to engage with our Parkinsons nurse at any time for advice who would then speak to our neurologist if needs be. Best wishes. HilsandR

[AJK2001]

Hi I wouldn't say my Mum has ever shown signs of claustrophobia but there have been times when we've been in a shop and she has asked suddenly to leave. I have put it down to a sensory overload when all of a sudden she can't cope with the noise, the movement of other people which her eyes can't focus on, she just hasn't been able to take it all in and she has just wanted to get out to somewhere calmer. Sometimes she's complained of the heat as well. I've learnt to make trips short, once we get over 30 mins, she is too tired to concentrate anymore and wants out.

[greelycat]

I read somewhere that impulsiveness is quite normal with PSP. And that they have a sudden urgent need to get up or do something and that it cannot be controlled. My husband would often get up, even though I would plead with him to wait until I got to him, so as to prevent a fall.

[Hidden in reply to greelycat]

My mom was the same... so frightening because of her many falls.

[Hidden in reply to greelycat]

This is our biggest challenge right now! It’s driving me crazy.

[crab2093]

Thanks again everyone. Basically CH used to fall everyday before the wheelchair was the favourite space. Now Falls are only once a week. On transfers:- bed to wheelchair or toilet to wheelchair etc when I think he has everything in hand ( a mistake). The Claustrophobia is the urgent need to move. 15min if in conversation more if in a cafe etc. When we are in the house and the heat gets the upper hand I take him out for a drive. Then all is well. We have the air-con on and have conversation. I think heat is significant. Anyhow about 3 wks ago we had finished intensive rehab so I suggested we drive from to Brisbane to see our daughter settled in her new unit. I figured that trains and planes would be an issue but cars might work. Id like to report that we had a good time. We managed to "easy access" accommodation okay and the long distance too. (Townsville to Brisbane is1400km) 70 miles. I took my pace and stopped approx every 350km. the claustrophobic was kept in hand . Not perfect but okay.

[crab2093]

whoops! 1400 km is 870 miles

[racinlady]

crab2093 - this is off topic, but you mentioned your husband falling weekly, usually when transferring. You can eliminate these falls quite easily if you use a stand assist device for transferring. They are usually available on-line or at medical supply stores either for sale or for rent. After buying one for my husband, we never had another fall. It was a life saver for him and a back saver for me. We used a Lumex which we bought through Amazon, but there are others on the market.

I hope this helps.

Pat

[crab2093 in reply to racinlady]

Thankyou. I shall look into it. Val