PSP Story With A Touch Of Humor.

[JudyJ]

My youngest, Melissa, age 20, returned to college a few weeks ago; she lives on campus.

Tuesday this week, I woke up at 6:30, feeling refreshed for the 1st time in weeks. I made my coffee and thought about the day ahead, while sipping my first cup.

I've found a sense of humor is essential in life, even more so, later in life. I did stand-up comedy for a few years in the mid-2000's, did lots of improv, but especially found ways to soothe the teenage angst of my young daughters with gentle humor...as well as help not take myself so seriously. And lots of practical jokes, me usually being the insigator.

Melissa was never a morning person; a lot like waking a bear from hibernation; grrr:). Feeling so refreshed myself, I decided to have some fun and started sending her text messages to "get-up and get going".

I did not expect to receive any replies to my texts, and if so, annoyed ones, which was the point. To my delight, her responses were sweet and tender. So we started sending these touching mother/daughter texts to each other. I thought to myself "college is sure doing her good!".

Shortly after 7:00, my best friend called. We've known each other 30 years. She knows I'm not a morning person either and teases me a lot about it. I answered the phone and said "You know better than to call me this early in the morning...what are you up to?".

I heard only silence, then thought, oh boy, maybe someone's died in her family or she's in some other crises. Then she said, "But Judy...it's only 7:00 at night." Huh???????? I grabbed the clock and put it right in front of my eyes, it was 7:05 in the evening.

With some big med changes over the past month that make me sleepy & a few falls on Monday, I was especially exhausted. I then realized I'd laid down around 1:00 in the afternoon on Tuesday for a "nap".

I told her there was something I needed to do & I'd call her back. I called my daughter, Melissa, and could hear lots of commotion; she was having dinner with her friends. I explained my time of day confusion...she burst into giggles as she told her friends, who also found this quite funny.

The joke was on me

With PSP, I do have dementia along with all the other symptoms as well as feeling tired, tired, tired all the time. I've experienced confusion and/or disorientation about day & time, names, etc., but not for that long of a period of time. I totally believed it was early morning. Completely. We will have giggles about this for some time to come

[jillannf6]

Hi a good story against yourself!

Keep it up!Lol,

Jill

[mummybear]

You should always be able to laugh at yourself, i do it all day long because most things in life are really funny, Even Hubby's hoist lift is whatever he would like, i sing up up and way in my beautiful balloon, or star wars music, or batman's jet he always laughs and that's all i need. so make the best of every situation so much better to laugh than Cry. Keep it up

[peterjones]

hi judy loved your story what is that saying LAUGH AND THE WORLD LAUGHS WITH YOU CRY AND YOU WEEP ALONE very true i think == stick with it mate \\ friend from across the POND

peter jones queensland australia psp sufferer.

[JudyJ in reply to peterjones]

Thanks, Peter! Humor is also a coping mechanism; danged if I stop it now!

[Hidden]

This reminds me of my mum in the earlier days of PSP. She would often ring the hairdresser on a Sunday to see why she hadn't arrived yet.Some days she would repeatedly try to go to her Tuesday coffee morning , even after being told it was Monday/Sunday etc. and being escorted back to her flat. One day my sister called in on Mum at 11am only to discover she had eaten breakfast and dinner and was just about to eat her tea! At the time we didn't know about the PSP -it did worry us a lot.

[jacq61]

Hi Judy ~ you're amazing! I sincerely hope you're always able to find humour in your life. I look after my wonderful mum who has psp. She's in the advanced stages and yet she still is able to giggle when I say something funny. I wish you all the luck in the world ~ take good care of yourself xx

[JudyJ in reply to jacq61]

Thanks for your reply. It gives me hope that if I lose various abilities going forward on this journey, I just might be able to hang on to my humor Bless you for being your Mother's caretaker; I know it can't be easy.

[villagebabe]

Dear Judy, will try this a second time. It did't show up the first time. Now I know why I try to shorten my week bay day ever so often. I have psp! Nice to know. Thanks! Lucille

[JudyJ in reply to villagebabe]

Lol

[bubbie]

hi judy, that is really funny. keep on laughing. it sure is better than crying. it seems you have a good attitude and thats great. i wish i can say the same. im a little down today. i see my husband alan much worse .he thinks he can do everything himself and than he falls. im always yelling at him but he doesnt care. it is so sad. im just tired of this illness and wish there was something out there for psp. patients. take care and keep warm ...bubbie

[JudyJ in reply to bubbie]

My heart goes out to you; I know how hard it is to be a caretaker and how lonely & isolating it can be. Remember always there are those of us out here, whether with PSP or as a caregiver, who are the wind beneath your wings.

[bubbie in reply to JudyJ]

hi judy, you always sound so up beat. im always down. i talk to a therapist but it doesnt seem to help much. i do the best we can but i see my partner going down and there is noyhing ouy there.everyday seems like a challange and it is so hard. i have lots of friends but they dont have a clue to this illness. they all think they do. we are still very social and i am very active in our temple so thats good. tomorrow we have an appointmentwith the neurologist so we shall see how things are going along. i dont know what stage alan is in but he has it 5 yrs now.he was on the duvunetide study but we learned he was on the placebo and was doing very well. to bad it was not approved. when will they find something for psp. take care and tkanks for lisening. write back bubbie

[JudyJ in reply to bubbie]

Believe me, I don't always feel upbeat; my mind is always ticking about this...so many questions run thru my mind, with my young daughters, 21 and 20, at the top of the list. How will they cope as I regress, so on and so forth.

I feel like I've come full-circle in a way. Both of my girls were born with a rare genetic disorder (1:80,000) called OTC (that's the acronym).Google it if interested for google Urea Cycle Defects; it will be there.

Both were horribly sick since birth and it took me until they were 5 & 6 to get them properly diagnosed at Mayo after chasing my tail for years prior to that taking them from specialist to specialist. It was a bone-crushing kind of loneliness I'd never experienced.

I'd always prayed-every night-that they would get diagnosed and on their way to good health. Until I found out what it was, how bad it was, and how bad it could get.

That was followed by years of more specialists, a closely followed protein restricted diet., etc. There is no cure nor treatment; it took til their early teens to get medically stabilized but there was also central nervous system damage as well as brain damage to deal with.

So here I am, 30+ decades later, diagnosed with a rare neurological disorder with no cure and only treatment for the symptoms.

My point is this, tho. I didn't have many supportive people in my life, including my ex-husband who just didn't want to deal with it (still doesn't) and by default, my immediate family was less than helpful due to alcoholism and/or chemical dependancy issues.

What I slowly found out thru my experience raising them with their special needs, and what I'm finding out again thru my own diagnosis, is people (big generality here) run from what they don't know because it's out of their comfort level. People slowly or quickly disappeared like bugs. The same people who said they'd help anytime and/or understand.

It hurt like crazy and I took it personally. Until, over time, especially with history repeating itself with me, I'm seeing the same kind of behavior. I believe at least with our culture in the USA, it tends to be rather shallow and intolerant. But I am not. Nor are my children. I taught them differently.

My daughter who just returned to college, had a series of misfourtunes for about 6 weeks before she left. She told me "well, all that must mean coming up for me must be good.". I sat her down and gently told her life isn't a 50-50 thing or necessarily a fair thing. Not to have expectations of smooth sailing because she just endured a period of rough sailing.

It may sound unkind in a way, but I'm a realist. Told her not to have false expectations based upon life "should" balance itself out, but rather appreciate she made it thru that rough spot and appreciate each and every day and what if offers.

I have much empathy for you and what you are experiencing. I know how hard it is to be a caretaker. There were many days with the girls I was so exhausted when I woke up, I thought "I just can't do this one more day." But I did. Somehow. And quite a few days, not very well.

So don't be hard on yourself, okay? Reach out anytime.

[JudyJ in reply to JudyJ]

I was just thinking...and so I don't sound like a cynic or a bum...what I wrote about the talk with my daughter not expecting life to be 50-50, or somehow life 'owes' you after a period of hardship, has been a reoccuring attitude of her's that she keeps tripping on. Her father, my ex-husband, who certainly has positive qualities, but was a big believer in "everything is 50-50", or if troubles appeared, took the attitude "God is punishing me.", etc. I found that type of thinking very harmful as a parent to put on a child, which is why I said what I did. I know she's an adult and can think as she wishes, but she's a young adult, and I still believe there are moments of opportunity to have these discussions. Make sense?

BTW...if you hadn't already noticed :), I'm a chatterer. Or at least I used to be. My speech is getting more messed up so if I seem to write a lot, it's because it's one of the few skills I have left that I feel I have mastery of...sooo, I'm going to use it!

[bubbie in reply to JudyJ]

hi again, all i can say that you are handeling your situation very well.i pray to god that you stay strong and he gives you strength and psp doesnt get any worse.do you know for sure that u have psp. in our group there are people with msa and cbd which are very simiilar. have o good day and we will be in touch bubbie

[JudyJ in reply to bubbie]

Thanks for all of your well wishes. Yes, it is a 'for sure', unfortunately. All of the objective testing, brain MRI, brain PETscan, EEG, & a 4 hour neuro-pysche testing session were all abnormal; toss in my some of my symptoms such as involuntarily falling backwards, and he has no doubt. The diagnostic process took 3 months. He looked for all the easier explanations as well as some more things I'd never heard of before. I have confidence in him. I feel blessed because he is so thorough. But he's also so approachable, doesn't 'rush you out the door', or minimize what you tell him. In fact, back in August when I was diagnosed, myself & my daughters were at the edge of a cliff, so-to-speak with financial debt and needing to move, etc. It was perhaps one of the most stressful times of my life.

When I saw him later that August, he told me he was so concerned about the situation with me and my girls, he actually called a meeting after working hours with his partners, nurses, and all the rest of the staff, about what/how they could help us.

That totally blew me away; seriously. After all my girls' health problems and my own, I never to my knowledge, had a Doctor who was so empathetic and concerned that he'd go that length to help.

He's new to this country; came from Europe. I of course told him how much that meant to me and how much I appreciated his personal effort, but said "I bet you discovered the help isn't out there."

He said that's exactly what he found out short of pooling their own money together & it really angered him. Social services in this country, by state, then by county have been slashed over the years to the point you have to be practically living under a cardboard box to get the help. I told him what I learned over the last handful of years, full of adversity, is the 'help' most people assume will be there should they bottom out is a myth.

A series of miracles came together and I was able to pull myself and my girls up and out of the long-term situation we were in, thankfully. I do believe in miracles.

So, for a doctor to care this much about not just the patient, but the family members as well, is a miracle in itself.

He is always positive and encouraging when I see him; definately not a Dr. Doom/Gloom, yet can deliver unpleasant information in a way that doesn't feel dramatic, under or over-stated, makes sure I understand what he's told me by repeating it back to him, etc. Like I said, he is a miracle unto himself; couldn't have found or asked for a better Doc.

[NannaB]

Hi Judy, this made me and my hubby laugh. He now knows he isn't the only one who gets his times mixed up. x

[JudyJ in reply to NannaB]

Well good if it helps someone relate:)! I started having symptoms of this a few years before the diagnosis, & quite frequently was confused about what day/time it was; but never for that length of time; the story has spread thru-out the family & are having fun with it.

[jimandsharynp]

Judy, Yes laughing in PSP is very important. My wife fell in our commode area and dislodgged the toilet seat (actually broke it). We had to laugh about that.

jimandsharynp aka jimbo

[JudyJ in reply to jimandsharynp]

Oh, my! How couldn't you laugh at that one! I'm glad you apprciate humor.

[villagebabe]

You are doing a great job In a very difficult situation. I love your humor and wish you had some of the support I feel from family and friends. I don't know how you keep it up as I couldn't even tho I knew an end was in sight when my husband had cancer. Maybe that time was to prepare me for having psp myself later. I try to i find something to be thankful for in every situation no matter what God sends my way and you must also.Phil.4:4-7 I think you already do I don't mean you must. Lots of Love comes your way for your courage and fortitude. Your fellow blogger, Lucille

[jacq61]

Hi again Judy ~ I was so interested to read your take on your daughters' illness and how you dealt with it. You really are one strong lady! I think it's comforting to think if you've been or are going through a rough patch then the good one will surely follow. Comforting but I agree, untrue!! I wish I could always say that things will get better but sometimes they don't. What makes the unbearable bearable is attitude and I can can definitively say that you have the most fabulous attitude I think I've ever come across. I know your girls will be fine and will cope with all that comes their way because they are your daughters and your special qualities will be within them.

Enjoy every moment you can Judy ~ that's all any of us ever have xx

[jillannf6]

hi judy

again

reading the replies to your blog and yoru great doctor has made me realise that i too have a v good neurologist / movt disorders specialist

lol jill