Hello from Indiana, USA: My husband and I... - PSP Association

PSP Association
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Hello from Indiana, USA

Writingwithcats
Writingwithcats

My husband and I were both English teachers. He is 11 years older than me and retired in 2014, a year after having five stents put in his heart. I took early retirement in 2017, a month before he was diagnosed with PSP.

I started noticing cognitive symptoms on a trip to Ireland in 2012. The years that I worked and he didn't, I was convinced that he just drank beer all day. Now I know that what I saw were symptoms of PSP: unsteady gait, slurred speech, slow mental processing time, forgetfulness, and "fuzzy" thought processes.

My husband was diagnosed by his ophthalmologist, who noticed the PSP vertical gaze. Besides not being able to see when he looks down, my husband's symptoms include continually watering eyes, difficulty swallowing, coughing and choking when eating and drinking (he's had aspiration pneumonia once), severe mobility issues, fatigue, and apathy.

We see a neurologist who specializes in PSP, but we can only get appointments every 18 months or so. My husband's cardiologist and pulmonologist have been much more helpful and supportive.

We have contacted a palliative care center because we want someone to check my husband's lungs and heart regularly. We live about an hour from the city where the doctors are. Also, I will soon need help moving my husband. He uses a scooter, but he still has to transfer to the bed, toilet, shower, etc.

We are very fortunate to have supportive families who live close to us. However, we have stopped going to many family gatherings because it's just too exhausting for my husband and, frankly, for me.

I'm not a very social person--neither of us is--so I don't typically interact much on social media such as this. I do read posts and do a lot of research online. I appreciate having Health Unlocked as a resource.

36 Replies
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Welcome to the site.

Here’s a PSP page with all kinds of information.

brainsupportnetwork.org/edu...

As for watery eyes. The cause seems to be his not closing them fully while sleeping. The lower part of the corneas are drying out. You might want to try an eye ointment at night and an eye gel during the day. Hot compresses also help. I got that information from a neuro-ophthalmologist. Who knew they existed?

Thank you for the tips. We'll try the ointment and gel.

My Mum eventually got referrred to a cornea specialist who prescribed a course of antibiotics to start with (1 tablet a day for 3 days for 3 weeks), prescribed Hyloforte eye drops 4 times a day, Clinitas Eye gel twice a day & Xalin night ointment at bed time, with a daily warm eyebag, followed by bathing. This worked wonders for Mum and made her eyes much more comfortable. The consultant said Mum's tear film had been disrupted, so when she blinked it was like blinking over sand paper, which then caused constant watering.

Thanks! I'll ask Chris's doctor about this.

Hello from Nevada, USA

I’m sorry to hear about your husband’s condition. Since you’ve already read some posts on this forum, I won’t repeat what’s previously been said.

I hope that your family helps out at your place so that you can get some time to yourself. The hardest part as a caregiver is being on call 24/7 without breaks. Constantly on guard waiting for the next shoe to drop.

That’s a lovely photo of the two of you. Thank you for reaching out. This is a safe place to tell it like it is. No social skills required but I am a tad intimidated that you’re an expert in the English language, lol. Honestly though, there’s no judgment here.

I’m really sorry for what you’re going through. My husband has good days and bad. Lately there are more not so good ones, but we keep trudging along.

We do our best, no regrets.

Hugs from I SewBears

It is nice to meet you, SewBears. Thanks for your support.

Hello from Maine. Just want to say that I wouldn't worry about seeing a neurologist regularly. Once you have the diagnosis, there isn't a whole lot that they can do. Ours, three hours away, specialized in PSP, and I liked her quite a lot, and the visits made us feel as if we were at least trying everything - but in the end this site and our GP were more useful.

I have already learned a lot from the wonderful people on this site.

Welcome. As stated already once the Neurologist has made the Dx there's not much for them to do medically, they may a few medicines to see if any positive reaction. All the issues that arise can typically be handled by his regular doctor.

It's good you have family close to help. You'll need breaks to make some "me time", caregiver burn out is a real thing.

Social gatherings can be daunting. Your husband may be having a hard time trying to keep up with all the action. Trying to focus on more then one thing is probably wearing him out mentally.

Ron

Michigan, here🙂I hear you about the exhaustion of getting to gatherings - It's just so dang hard getting us both ready and in the car - once we are in the car I am glad we got out , but just thinking of getting the wheelchair out of the car is enought to make me decide to watch movies instead😊

We're in Bloomington. My wife (age 71) is in her sixth + year of dealing with PSP and all it's attendant challenges. Feel free to contact me if you'd like. Regards, lb

Cuttercat
Cuttercat
in reply to LeeBeeUSA

I’m in Bloomington as well. Moved back a few months ago.

Cuttercat

We're just outside Martinsville, close to the Monroe and Brown County lines. Thanks for the offer of contact. We'll take you up on it sometime!

Very close. Thanks for the update.

Hi, I am not naturally a social person either. I had never taken part in anything like this site before. I joined this site in 2013 when my husband was first diagnosed and have been here ever since. He died in 2016, but I still can't let go. This forum saved my life and made Steve's journey so much better, as I was able to find out things the professionals didn't have a clue about. It is an extremely safe place to express your feelings, vent your anger, a huge shoulder to cry on. The knowledge that you weren't the only person up at three in the morning, scrubbing the bathroom floor, changing sheets for the third time that night, is immeasurable. Suddenly it's funny, we all are vying to be the one who changed the most. This site is full of laughter, anger, tears, but most of all, LOVE. We are all one big family, fighting together this evil disease that has struck our loved ones. Please join us and take part, as much as life will let you. This is one media site that is worth its weight in gold.

Sending big hug and much love

Lots of love

Anne

easterncedar
easterncedar
in reply to Heady

Amen!

I'm so sorry for your loss, Heady. I know that's trite and completely inadequate to say, but I mean it. And thank you for the welcome.

I echo what Anne says. This site helps you to not feel isolated. It becomes another family where you can share the bits you protect your own family from. Welcome. Love Jean xx

Welcome to our group. I'm typing from Florida. I'm the patient with PSP. Only diagnosed last year. This group is a great resource. There are a few patients, like myself, that can still offer our perspective but like other sites I visit, it is mostly caregivers. As PSP progresses, no doubt I will just drop out of the site one day. I am a natural introvert and can spend hours and days with my own company but I do have a caring wife that struggles in making sure I get out.

I understand fully about the exhaustion at gatherings. Since my first symptoms in mid 2015 to late 2016, I've developed "sensory overload" along the way. My brain processes information so much more slowly these days. It overwhelms me and causes an immediate exhaustion increase. It can take a while to recover. Some things I found that help I borrowed from the autism community. I try to limit conversational group sizes to no more than 3-4, I pull away to quieter areas if at large gatherings, when socializing and having conversations with friends at home there is no TV or Music going. I wear hearing protectors if I know I'm going to be in large crowds, and lastly, I close or cover my eyes if visual stimulus gets overwhelming.

Tony

Good to hear from you, Tony. The patient's perspective is incredibly valuable and too rare. Shasha, peterjones, Jillann, DaddyT and others have enriched the community and helped us all. Peterjones made us all laugh all the time, too. (His posts are well worth looking for in the archives.)

Thank you, Railfan. It's good to hear your point of view. I taught lots of kids who were on the spectrum, but I hadn't thought to apply those techniques here. That's a valuable idea!

Hello from Illinois! I hope this site gives you a sense of comfort in knowing you’re not alone trying to manage this disease. I’m 36 and help care for my mother, 68, who first presented CBD symptoms over 15 years ago.

I’m in Indiana as well. Tell me where you live. My husband passed away a year and a half ago and I moved back home.

We are looking into a support group as there are none in this area.

I’ll be happy to guide you but this website will give you more than anything else. It was and is a Godsend. Everyone is wonderful and truly care. Count on them.

Let me know.

Cuttercat

Perhaps we could arrange to meet sometime and share experiences?

Cuttercat and LeeBee, it would be nice to meet sometime. As I'm sure you know, good days and bad days rarely give early warning, so planning is always "penciled in." Let us know when and where you're thinking.

How about a restaurant/coffee shop convenient to all? At a time that would ordinarily be best for all. I'm flexible now that we have agency help from 7:00 a.m. to 10:00 p.m..

We don't yet have anyone to stay with Chris while I'm gone, except for my son. I don't like to do that often or for a long time because Robbie can't drive and is also easily overwhelmed with our situation. We might be getting home health care soon, though. I wasn't thinking when I assumed we would meet with our spouses. I'm sorry for the misunderstanding.

I understand completely! We'll figure out something. I need to find out how to communicate off-line. Will post again when I do.

Take care, lb

Railfan
Railfan
in reply to LeeBeeUSA

I added a response on how to private message someone.

Of course. Is it ok to share email addresses on this site? Is there another way we can communicate without subjecting all the other posters to our logistical messages?

I'm looking into this question. Will get back to you asap.

Thanks!

I too am so exhausted 😩. The bathroom accidents are nearly intolerable....

I am in the USA as well, South Texas......

I understand! I talked Chris into wearing disposable underwear. I also have puppy pads around the toilets and beside the bed. Both of those have helped a lot.

If you wish to private message someone, just click on their name. It brings up a profile page and you can select "message" from there.

Thank you!

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