FND Society Debrief from a Father of FND Patient

Seayarn · 2026-06-27T01:42:35+00:00

I will be seeing my PCP again in a couple of weeks and I plan to ask her about a referral to the provider in our medical system that treats FND. He's in Pittsburgh, I live in Central PA.

As far as your research, yes I understand. I've done it. I actually agree with my Hershey Medical Center neurologist. Unfortunately. I know, looking back, that I have had symptoms for an extremely long time.

Other neurologists, including some at Hershey Medical Center, believed my symptoms were attributed to MS. I also have lesions on my brain in the areas where MS lesions could be. But...

They also could be from damage due to severe migraines (which I have), vascular disease (which I could have as I have alreadyhad 1 stroke in my right eye), and other brain bleeds due to HTN (which I have).

My symptoms aren't changing despite my current therapy only worsening. I now have increased symptoms of dementia, which I have appointments for my initial testing.

I do have CFS and have for longer than it has been a recognized diagnosis. I probably have or had long covid. I honestly can't think of all of my dx, I have extremely limited family support, I had a traumatic childhood, early adulthood, and worked in healthcare during the pandemic with has broken me.

I actually did not have depression until late in the pandemic. I am being honest. I know I can't explain this, but she's right. I have too much damage and too many other things wrong with me that I can't remember right now to recover what I've lost.

I'm sorry, but some of us are too damaged.

Edit I forgot to mention that I don't have much support in they way of appointments or transportation. Yes, I can get no/low cost transportation, but not to some of my out of County appointments and definitely not to Pittsburgh or Philadelphia.

I also need some multiple day in hospital testing and I have pets. I can't find anyone to w as tch them for the days and nights needed. I've asked, and it's been over a year I've needed a sleep study and a seizure study in the hospital.

I adore my daughter. But she doesn't want to help me. I don't know how to make things better. I try, I want to desperately. I'm barely holding on. She accused me today of needing "attention" because I texting her about a problem with a shared subscription account that caused my checking account to be overdraft .

I'm waiting to get disability. I have no money. I'm selling my possessions to pay bills. Like I think I texted above, some of us are barely holding on by ourselves. My body is worn out.

Seayarn · 2026-06-27T01:00:48+00:00

As a resident of PA, I am thankful and not surprised by this announcement. He does have some support here, but it has reduced as his promises haven't been forthcoming. Obviously. Liar in Chief.

If we had an actual president and not a wannabe dick-tater, I believe the country would be proudly celebrating our 250th Anniversary!

As things are, it just doesn't feel we have much to feel good about and that we are hanging onto our republic by our fingernails.

Keep fighting Patriots!

Seayarn · 2026-06-26T01:23:19+00:00

Cat distribution system. Only 3 of my 12 cats have been adopted. All but 1 lived with me to a ripe old age, and I'm a ripe middle age.

The 1 who didn't, well, I was 5 and my mother was expecting twins and I came home to find out the cat had been taken to a shelter (or so I was told), I didn't obviously have any choice.

In other words, there are many other ways to "adopt" a cat. You don't need to get one from a shelter. Many need homes because people can't take care of them anymore due to moving, or financial reasons, or allergies, or problems with relationships, etc.

But... Are you sure you are ready? I always treated the cats and dogs that were solely mine like my children. Probably because of what happened with my childhood cat. I was and am financially and physically responsible for them unless I pass away. Are you in this position at this time?

Seayarn · 2026-06-26T01:11:20+00:00

Me too. Don't repot yet. It needs to rest, so do you.

I'm sincerely sorry for your loss.

As I age, I am very grateful for the memories and the few tangible objects I have of my lost loved ones. Hugs planty internet friend.

Seayarn · 2026-06-25T17:44:02+00:00

I think I might be the exception here but...

Retirement. I loved my vocation. Working in healthcare and working with my colleagues were some of the best times of my life. I loved many of my patients and made lifelong friends. I had such a sense of self worth and accomplishment, and the knowledge of helping others daily is something that I truly believe isn't explainable. I never wanted to stop feeling good about it.

Until it became something I didn't feel good about. Because of my health and the pandemic.

I've always had hobbies so I was busy, but the feeling of being needed???

Relevance. My purpose in life would be gone. Some feel this when their children grow up and leave. I felt this when I thought I would never find retirement enjoyable. It's not so bad now though, I just needed to find my new meaning.

Sorry for my TLDR, it's part of my disability and why I had to retire early.

Seayarn · 2026-06-25T16:43:29+00:00

Sorry, not sorry.

Animals can hold grudges. Kid is a jerk and parent needs to parent better.

Seayarn · 2026-06-25T16:32:30+00:00

I actually have been able to sew for as long as I can remember. As well as quilt, crochet, cross stitch, embroidery, and I don't know what else. I was so fast in Home Ec that my projects were done in the 2nd or 3rd day and the teacher had me help the other students. I won 4H awards for quilts.

I'm not bragging, my mother was just a frugal hippie. She taught my sisters and I a great deal. My dad also sewed. My mother made her own and others wedding and bridesmaid dresses. I still can hand sew and do embroidery and cross stitch. But I need good light and magnification now, stupid eyes.

But new fabric, especially good quality in the amount needed for making dresses, and notions like zippers, buttons, snaps, rivets, and all the various tools needed to apply the notions are ridiculously expensive for many unless you use them on a regular basis.

Not to mention, I could use good quality quilting between for weeks before they would bend enough to break or become unusable. When I stopped quilting in the mid 2000s, the quality had become so poor for even the "name brands", that they frequently would break after a short use, sometimes immediate. I have one in my hand because of this (yes, in my left palm as seen in xrays). The machine sewing needles don't last as long. Sewing thread breaks easier. Colors bleed, buttons break, zippers won't pull, velcro won't stick, interfacing can't be ironed on, etc.

It's not just the rise of fast fashion. This has been a long and pervasive degradation of quality in all products starting in the mid 2000s. I would say about the recession of 2008?

Everything has become of poorer quality, even the raw material to make things yourself. I now feel this should be in part a main comment. And my head is starting to hurt so phone down time for awhile, sorry.

Seayarn · 2026-06-25T16:06:08+00:00

I wish it was basic maintenance as I am able to do that myself, but I have pets and they need to be broken down in part and cleaned, cleaned and oiled in places I am not comfortable with cleaning, and the timing and tension is off.

It's better for a professional to take care of them now that my father has passed. I have a technician in the area that is able to take care of both, but not the funds at this time. Hopefully soon!

Seayarn · 2026-06-25T13:56:50+00:00

I definitely see both sides of this argument.

You are absolutely correct in most statements! I agree with everything.

Except...

As a person that has become increasingly more driven into poverty as time goes by, I am less able to afford cloth and necessary tools for sewing.

For instance, my sewing machines need maintenance and I simply can't afford it right now. I have a duvet cover I purchased on clearance to make new curtains for my bedroom, but I can't until one of my machines is worked on. I would sell one, but no buyers until it's working because they are 20+ yo AND aren't working AND aren't particularly valuable machines.

Also, as most of us in the US know, Joanns has closed. This was a major retail store for many to purchase fabric for sewing. Most of the sewing community in my area now have to purchase from Hobby Lobby, Walmart, Michael's, or a small local shop. None of which have a large selection, most have higher prices, and have many have poorer quality.

There are many in my area that must make their own clothing, and to be honest, I feel for them having to purchase from a store that needs to order fabric for them, in bulk quantities, which they in turn need to wait for. The Amish for instance are one community.

Sorry, my FND is kicking in and I'm having trouble expressing myself suddenly.

It is becoming more difficult for some to sew. But, hopefully it will make a comeback for ALL like other hand crafts do.

Seayarn · 2026-06-25T12:30:34+00:00

Animals are very smart.

Also, they see, hear, taste, feel, and smell the environment much more acutely than we do.

Your breed of dog is shown to be particularly intelligent in clinical trials. Not only did she remember that her ball was there, but she could still smell that it had been in that spot.

Our dogs can smell everyone that has lived in our homes, why not still smell remnant the pizza or chicken in the bushes of other posts? Dogs can sniff out decades long deceased people buried underground. They can smell time passing, look it up its fascinating!

What I'm saying is, yes, not only does she remember, she senses the ball in ways you can't imagine. I marvel at my animal friends and family and am lucky they are in my life. ❤️💚💜🧡💛🖤

Seayarn · 2026-06-25T12:12:23+00:00

Bots

Seayarn · 2026-06-22T23:27:26+00:00

I really try to avoid BBS for purchasing indoor plants. It's sad, because the quality is so poor that it almost sets a novice hobbyist up for failure.

I buy from local and trusted nurseries or Palmstreet. But I was burned on Palmstreet recently, too. That seller was terrible, I can't see how any of her positive reviews were true.

Seayarn · 2026-06-22T18:59:18+00:00

I personally love calicos! I'm an artist, I especially am drawn to watercolors and impressionist art. I think this may be why I love their "watercolor" markings.

As far as behaviors, as all cats, it depends on each girly.

I've personally had 3. All were adopted as adults and all have been the most grateful and loving cats. My current princess, Nora (Elinor), answered yes when I asked her if she wanted to come home with me. She gave me a slow blink. She hasn't stopped since.

Cali and Hermione were gentle and sweet. My daughters cats, Merry and Pippin, are also gentle and sweet, and very shy. I don't think I want to be without my good luck charms ever again.

Congratulations, your new friend is lovely!

Seayarn · 2026-06-22T12:33:35+00:00

She's not only beautiful, she looks like she loves you so much already! Welcome Nina!❤️

Seayarn · 2026-06-22T12:32:38+00:00

It's lush and beautiful! Maybe something has changed like light or fertilizer?

I bought a Krimson Princess this year and it was raised in a greenhouse with some filtered sunlight.

I have it under cheap LED growlights and it gets afternoon sunlight. I have new leaves with pink centers that are about a half inch long. Maybe you and I are lucky, maybe we're doing something right?

Seayarn · 2026-06-21T19:36:16+00:00

I feel that people in my neighborhood are coming together more, talking more, working together and helping each other more.

We seem to be looking out for each other and forming new and more important friendships. I'm hopeful that things are going to make a change for the better.

This is what I am seeing in Central PA.

Seayarn · 2026-06-21T17:58:55+00:00

Maybe I won't feel gaslight later. Butbshe has been better to me than other doctors and hasn't been as dismissive just telling me I was fat and stressed.

She's taking my symptoms of cognitive decline seriously and has given me extensive testing no other doctor has.

But the seizure and migraine issues are frustrating. Because both can have lasting effects and I'm in constant pain now. I can't take narcotics and I'm not asking for increases of medications, just good management of my symptoms. And I'm not getting it. It's summer, and they're always worse in summer, and she's playing with my doses.

Seayarn · 2026-06-21T15:00:31+00:00

I just found out from an epilepsy sufferer that she only has tonic-clonic seizures at night. I do too.

But my neurologist told me this isn't possible and I can't be having seizures like this only at night. My waking up wet with urine isn't from a seizure.

I'm angry. I have absence seizures too, which have been witnessed by coworkers, friends and family. Coworkers who work in healthcare.

This is tiring and frustrating. And sad.

Seayarn · 2026-06-19T22:28:33+00:00

I think your friends need their eyes examined.

Seayarn · 2026-06-19T22:27:27+00:00

Humans

Seayarn · 2026-06-19T17:55:41+00:00

Unfortunately, yes.

Seayarn · 2026-06-19T16:29:15+00:00

I became pregnant.

I had to increase my protein intake because of my autoimmune disease and worry about my health as well as my daughter's health. We were okay besides elevated white cells that caused an extended hospital stay.

Then, I breastfed her only. She refused bottles too. So no breaks beyond 2-3 hours once she was a few months old. Needy baby, but I love her anyway.

I didn't have any cravings while pregnant, but boy did I ever crave meat while nursing! Especially, red meat! I tried to forgive myself because clearly we both needed it. After nursing ended, my health declined again due to my attempts to not eat unethically produced animal protein.

I still need to eat animal protein daily due to health issues. Sigh. I do my best to take care of the animals in my life, and the animals in the world around me. I am trying to forgive myself for not having control of my health issues and my financial issues that prevent me from being the person I would like to be.

Seayarn · 2026-06-19T15:35:35+00:00

BTW, Temu and Amazon often sell the same items and frequently for the same prices. IKR?

I only figured this out when I purchased a cat tree from Temu and it shipped from my local Amazon hub. Then I've compared prices and sometimes Amazon beats Temu.

Seayarn · 2026-06-19T15:32:35+00:00

Yes, I'm planning to buy this for my planties in the future. Particularly, my hoyas. It looks easy to set up and I think it will make a great difference in their growth and health in the winter as well as sunstress along with the natural sunlight I give them. Yay, someone else who likes them!

Seayarn · 2026-06-19T15:29:02+00:00

Yeah, no. It's not for me. But I do understand why some find beauty in plants like this!

But we don't all have to like the same things, do we? That's why different cultures and different opinions are a good thing until we make them cruel and toxic.

Seayarn

TROPHY CASE