One daughter is in Scotland for the semester. My other daughter is taking a trip to California in March. I'm stuck at home with PSP...grrrr.

[JudyJ]

Sorry I've been off-the-air for quite a while again. Too much going on.

Happy to report Melissa recovered from her surgical complication on 12-23. That was scary. Coughed up blood for several days due to her damaged trachea. But she bounced back quickly. Youth. Wouldn't care to repeat it but it has it's benefits.

Much planning during Jan. for her trip. Left the 28th. Is having a blast. Her college setting as well as dorm is in a castle in Dalkeith. How cool is that. Is spending next weekend in London. The hip she had surgery on is giving her a bad time, tho. So much walking involved.

Katy is planning to attend a conference in Los Angeles, CA, in March. It is about Trichotillomania. Just call it Trich. In short, it involves involuntary hair-pulling. Has had it since age 10. Have tried much in terms of therapy, medications, but is known to be next to untreatable. Many speakers on various subjects. Hopefully she will learn much while there. It's believed to be a neurological disorder and certainly not a bad habit. Thinking is also it's in the Tourett's family. I wouldn't wish it on anyone.

As for me, I saw my Doc mid-January as a follow-up to my neuro-psych exam early December. I was told it revealed I have very marked changes (to the negative) in my frontal lobe which involves executive functioning. Also notable change in memory.

My Doc also upgraded me, or downgraded me, whichever way you perceive it, to having moved from the 'early stages' when diagnosed 8-12 to now the 'middle stages'. Apparently he only works with 3. It's really neither here nor there.

But, I was mighty unhappy about this information which evolved into being damned MAD about this whole situation for at least a few weeks. Same old story, just a different visit. 'Sorry, there's nothing we can do for you.' 'Sorry, there are no more meds that might help you.' My favorite is 'Sorry this is happening to you but stay positive.'

Huh?????? Forgive my language please, but that visit which was a bummer from start to end, the powerlessness I feel about and living with PSP, the 'stay positive' comment pissed me off.

It just sounded like empty words. I have this giant, stinking, dragon in my life with no tools or resources to slay it. Or make a dent in it. Or keep it bay.

So, after a very good stew, decided to take matters into my own hands. Time and again he's told me eating a nutritional diet won't make a difference, nor will more activity, nor will anything actually. So it begs the question...how am I supposed to stay positive when staying positive IS so important? The Doc can't/won't even toss me a bone to nibble on.

Since 12-3-13, I've been pushing/prodding/pestering him to refer me to a place called 'The Capistrant Center' in St. Paul, MN. It's big, reputable, and deals only with Parkinson's patients and ALL movement disorders, including PSP.

Toward the end of January, and out of utter frustration when frustration/stress is what I'm to be avoiding, I involved my Health Care Director. She made calls and got it done. The referral had to come from him and then there was the hassle to get my insurance carrier to approve it; the Center is out of it's network.

No sick person should have to jump thru these ridiculous and tedious hoops to get some help and get some hope. I just refuse to give up on hope. I know there's only one way out of this but I'd prefer it be years from now. I cannot believe more focused attention won't be beneficial.

All it seems I've been doing since I was diagnosed is twisting in the wind between appointments. That's not acceptable. It isn't by a mile.

So I'm delighted to report I'm finally in the door of the Center beginning this week. YEA! I start Tuesday. I have hour long appointments each with a physical therapist, speech therapist, and occupational therapist. From there, they will each decide how much time I need per week and how frequently I need to there.

They also have Therapists (as in mental health) available to see which I will connect with right away. This is a lonely, isolating journey and it will be a relief to talk to someone who just 'gets it', and develop coping strategies.

They also have various other therapies, seminars, support groups, etc. I solidly feel this is where I need to be and it can only be a positive, beneficial thing for me overall. I am determined to slow this PSP-train down. But I cannot do it alone. If I could, I'd be doing it already.

I have always had a sense of wander-lust since I was small, and have had the good fortune to travel a bit over the years, but not for a long, long while.

My goal is to work hard in these various therapies, execute a much needed and overdue overhaul of my daily diet, and be stronger and more self-sufficient again.

My 'reward' in addition to feeling better overall is to plan my own trip late May, early June, when Melissa is back from Scotland. I've not been able to get away from my responsibilities at all unless it was a night or two in the hospital, and, dang it, that doesn't count.

If I'm not quite sturdy enough to travel alone, I will bring a travel buddy.

Still struggling with some apnea in spite of my C-Pap machine, tremors, and muscle spasms that wake me up at night, and general pain. This deep freeze winter up here in frozen Minnesota hasn't helped with the pain aspect (arthritis). Winter started early and it is still going strong. Down to 14 below tonight with wind-chills about 25 below in the morning.

As an aside, Minnesotans are often seen on news reports all cheerful and hardy saying something like 'It's Minnesota; we're used to it! It's a bunch of nonsense...never get used it. The population at large are pale, depressed, and CRANKY. Lol....

Will keep you updated on how it's going at this Center and positive results. It sure beats sitting here doing nothing and trying to stay 'positive'.

It concerns me deeply how many others are out there in this kind of position and end up giving up on advocating for themselves. I was almost there. Because it's utterly tedious, frustrating, unnecessary and belittles you to something less than a human being. More and more it seems the medical staff and health insurance people see us as a patient number only, or a task to be scratched off at the end of the day. It feels inhumane.

Til next time.

Love,

Judy Johnson,

Minnesota, USA

[peterjones]

well judy Johnson or oh woe is me\\\\ im stuck at home with psp\\\\\\\well it rymes don't it\\ you have written to much for me to answer so I will say welcome back to the fold mate cranky or not I did tell you that missy would be ok and its good for the girls to go off on their own I know we worry sometimes but its for the better I believe it makes a person stronger I thought you had hibernated like the bears mate \\ well im still a believer in being positive so I will have to beg to differ on that one mate anyway I will sign off now so\\ I m looking out for you but NA SOONER CASA SEE YER MISS JOHNSON TAKE CARE OF YOURSELF PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[JudyJ in reply to peterjones]

Thank you, Peter!. To be clear, I too believe in being/staying positive but my experience with this Doc in hindsight was he would tell me all the negatives, also tell me there is nothing to do about it, yet stay positive. Not a simple task! This will be much better - I will be involved in a community of people like me; I need that now; and structure in my day and therapies to make myself stronger and help me help myself will be terrific. Beats the heck out of going home after each appointment sitting here unsure of a lot of things on top of not feeling well. Makes no sense to me. As for the girls, totally agree they need to get on with getting on with their lives and exploring their respective girls. I will not let my PSP get in their way of moving forward.

Love,

Judy

P.S. I deserved a good stew and earned it at that, so I indulged. Actual helps me move past stuff versus stuff my feelings and doing the 100 percent of the time 'stiff upper lip' dance; been doing it too much. I am but one person.

[peterjones in reply to JudyJ]

judy good on yer mate your a champion peter jones queensland Australia psp sufferer

[jimandsharynp in reply to JudyJ]

Judy, We are in Florida. We have been approved for Hospice care although my wife isn't "at the end time" yet. They have been a great help. The nurse visits once a week to check vitals. Hospice has their own pharmacy and supply some medications for FREE. The chaplain comes once a month. The Hospice social worker once a month. They all can come if needed outside those times. Since you are alone you might want to engage them just to have an outlet that comes to your door. They bill Medicare once a month a flat fee for care (no individual bills no matter how many times they come). Oh, also they sent a physical therapist for two visits.

Jimbo

[laroux]

Hi Judy!

Good for you! Up to your last paragraph, I was wondering if you were advocating for yourself. I'm impressed, although women tend to take the bull by the horn more so than men. I'm having to advocate for my husband and sometimes I want to scream, I admire your strength and will. Whether you reckongnize it or not, you are incredibly positive!

joan

[JudyJ in reply to laroux]

Thanks for the feedback. I really hit a low point after the 1-13 appointment in which I was told I'd advanced from the early to middle stages in a year and a half. Then I got mad. Real mad. He's a good doctor but perhaps not focused enough for my situation. Meet every 4-6 weeks, says the same things, then sends me home w/o any useful 'doing' info to help myself.

The real rub is the neuro-psyche doc who performed the testing on me 12-3 from the Capistrant Center was convinced based on the results of the testing she did at the end of the session, I needed to get in there to access all they have to offer. She said she would call him as soon as I left.

Days then weeks went on. Total silence. Called the doc's office; no, they hadn't heard from her. Called the Center and was told yes she did call. Called the doc's office back, now around Xmas. Insisted they hadn't heard from the Center's doc. I asked if the could call of fax her. Nooooooo....I was told....it was the Center's doc duty to call or contact my Neuro, not their's.

Crazy-making nonsense!!!!!!!!!!!!!!!

On the 13th when I saw him, the still insisted they never heard from the Center's Doc. And, YES, what a great idea I go there for those therapies. They would go a head and fax her.

10 days later without a word from either place, I called my Doc's office again and got the 'I faxed her but I'll fax her again'. Grrrrrrr.

So everyone was in agreement I go there and it would be very beneficial but it all came down to some politics-who should be calling who-and faxes that probably weren't sent they said were.

That's when I got my friend who is my Health Care Director involved and had her call my doc's office-I was on the edge of completely losing it with them. She got the same song and dance but she's very assertive.

To my delight, I got a call from the Center about scheduling my physical therapy session. Yea. But...I told them I was told I'd also be receiving OT and Speech Therapy. She said he 'didn't check the other 2 boxes, so I can only schedule the PT'.

Called my friend again VERY frustrated and asked her to call my doc AGAIN and have him send the referral for the other 2 therapies.

The next day I got a call from the Center "Of course he wants you to have OT and Speech Therapy; lets get it scheduled."

T-E-D-I-O-U-S.

And going to the Center wasn't even in dispute. It was a lot of dropping the ball and dinging around and people who have the power to make things happen treating it like a real person isn't involved.

This started 12-3 and I'm finally starting 2-11. I have a progressive, terminal disease. I don't have an extra 2 months to wait around to get what seems simple...getting me in the door...take so long. This is my life. It's important. Not to mention the extra stress involved in making these calls and being bumped back and forth like a rubber ball.

From this point forward, I decided, I'm having my friend intervene for me at an early onset.

As a caregiver...I know you experience the same types of things and it can just drive you nuts! And, it's so unnecessary. Just plain stupid in fact.

Caregivers have enough to deal with on a daily basis then to get jerked around by the 'system' or 'systems'. My heart goes out to you.

This one made me cry (literally) "UNCLE". I do not have the time to spare, nor the capacity of the related stress. Sick people shouldn't have to get sicker trying to get the help they need to help themselves.

I'm hoping and staying positive that my experience at the Center will be better managed, stream-lined, and user-friendly.

Thanks for listening to my rant. I don't believe the system is broken in my case, just a handful of people who didn't care enough or put forth the effort to get this done. Result is just as bad.

[jimandsharynp in reply to JudyJ]

Judy, "middle stages"? What does that mean? Nothing! You can aspirate and die of pneumonia in any stage. You could have a bad fall and crack your skull in any stage. Stages do nothing to encourage PSP patients and I find them down right detrimental to mental health of the patient. Who gives a darn about stages, certainly not my wife and I. Just had to get that off my chest. Sorry!

Jimbo

[laroux]

I hope you're OK to be alone when both your girls are away!!

[JudyJ in reply to laroux]

I have much confidence I'll be fine. My cousin lives a mile away; he's retired and can be here in a heartbeat. During my Jan 13th appointment with my Doc, he strongly suggested I hire someone to come in once or twice a week to help with cleaning, cooking, chores. My Mom is doing that. She's 76 and going strong. And loves to clean and cook, God Bless her. Plus there's always 911. I've learned my limitations over the past 18 months and listen to my body carefully. I know when to lay low which is actually a fair amount of time. Defying that is not smart. Tried it a few times and failed badly. I'll be okay; you're sweet to think of that.

[laroux in reply to JudyJ]

I should have known you would have it covered that's good!

[shasha in reply to JudyJ]

hi judy i am in awe at the way things have turned out for you -- after being toLD YOU HAD DECLINED TOO - GOOD ON YOU !!!!!

[formercarer]

Dear JudyJ

It is awful that you have had to fight for the help you need. It is the same here in the UK

I hope you will use some of that drive to ensure you get the right social support in place. You are going to need the ongoing support of capable friends. I agree with you that nutrition and exercise is important, but what you think is every bit as important. Cultivate your relationships while you can. Include, and keep people in your life that can make you laugh. Exposure to positive emotions is perhaps the most powerful medicine available to you. I suspect from your writing that you have a superior intellect to me. I urge you to use it in order to find as much uplifting company as possible. Your sense of humour is likely to stay with you all the way.

[jillannf6]

Hi Judy

Many thanks for sll you have done fior yourself And other PSP people!!!

It iis great that' you have the clinic to look Fwds to And gp

Hope it goes well4,you

Jlil lol

[jillannf6]

"Gp", Should not be there

Lolljill

[NannaB]

Hi Judy, Peter and Jill

It amazes me how fluent you all are here and it gives me some insight to what my husband may be thinking. He rarely speaks and then only to answer a question, never volunteering information. I try to stay positive but am not going through what you all are. I send you all my very best wishes and think of you often.

Nanna B

[easterncedar]

Go Judy! I'm so impressed by your ability to fight, and I'm very glad you're getting some help through the center. Thanks for the update.

[jillannf6]

Hi nanna b

Many thanks r4 your kind words!

You r great too ,

Lo l,jiłll

[mombcd12343]

jilliann

why wont you write to me I can't write well either my address is 1694 highway 35 south in foxworth Mississippi .

my zip code is 39483 my name is barbara daughtry my e-mail is [e-mail].

barbara daughtry

[e-mail]

[marytea13]

Hi Judy I am with u in more ways than one! I had a fall 2 weeks ago but it was due to the taxi driver not coming up to my door & me trying to get down our drive to him so fell nearly hit his door - that worried him! I don't see my neurologist until April after Easter. But I recommence physiotherapy this Thursday & am looking forward to that as people had remarked how better I was moving due to physio. I am still trying to play bridge but it varies how well or bad I play! I also have changes in frontal - temporal lobes & am aware that executive functions may be effected but so far ok. u wrote u were "diagnosed 8-12 to now the 'middle stages'- please explain? Cheers Mary in Perth western Australia.

[ultramodern]

Bonjour, Judy.J of sunny Minnesota (well it's gotta shine someday!)

I've been reading with great interest and must say admiration, your background and what you are doing about PSP...

As I said in a post a few weeks back I am shocked and appalled at the young age of those diagnosed.I had to put it down to some possibly younger generation Neuro's who are much more competent than their Professors who'd never heard of PSP/CBD...and didn't want to know!

On a personal note . My bride at 70, hadn't been feeling well for several years (was it burnout?) after twice consulting in Geneva Hospital Neuro Dept: (Switzerland) we went over to Johns Hopkins Medical Centre in Baltimore in 2011 ...but came away without a diagnosis...except that her constant falls and walking problems could come from a neck problem!

So she was operated. Next day her left arm was paralysed for good.

Then in early 2012 eureka. An internationally renowned Neuro from Grenoble (Fr) came up trumps. It was PSP/CBD. She was released when 73.

Reason I relate this is what Jimbo posted about 'stages'. Given all sufferers are different, it don't mean a thing.

I've read last year of an English gent who was diagnosed with PSP 17 years ago and still getting about!

But staying positive! That's the toughest thing of all.

Just continue as you are Judy. Carry on doing what you can, as long as you feel you can. You are right to say sometimes you feel alone on this journey, but then you say your Mom and cousin are so supportive, it's wonderful to be able to count on them. But please don't forget the very many friends on this forum who've had their lives changed by this disastrous disease. Finally, may I add how sad I felt reading about the girl's disinterested father. I just shudder at the inhumanity, sorry.

And you are so courageous to say that you don't want your loving daughters to have to be your carers.You who had to face their illnesses alone and they are both autonomous today. Halleluja Mayo Clinic!

Excuses for the length of this message...but you are a HERO in my book.

With you in mind,best,brian.

[Lynda57]

I hear your frustration… facing one's own mortality is not an easy task. Trying to calculate how much good time you have to enjoy your life is difficult with PSP Trying to prolong your life with PSP in spite of all the negative prognosis, is challenging. I am hopeful that with good exercise, diet, and medical attention I will be able to cheat PSP for at least a couple years. Hope is the only thing that we seem to have. Good luck with all your therapies!