A newbie with PSP needs advice!

[loosebeer]

Please excuse me if this is long and wordy, but I have no one to tell this to.

I am Bruce. I am 61 years old. I was officially diagnosed with PSP on June 19th of this year. I had come to the conclusion that I had PSP 2 years earlier when I was 59. But we’ll come to that later. First, let’s back track to Thanksgiving weekend 2013.

My wife of 24 year picked my 58th birthday to inform me that she wanted a divorce. Talk about your Black Fridays! It wasn’t totally unexpected. We had not been getting along for a while. She wanted stability, someone to take care of her and our 4 kids, then ages 24, 21, 17 and 15. I told her that the two of us could expect to work until we die, no retirement for us. I am 7 years older than she is, and she didn’t like this idea one bit.

Now, we will move up to just before New Year’s Day 2014. I am buzzing along, high on anti- depressants and anti-anxiety meds. I am moving out of the house, and eliminating things neither she nor I need. Like a king size bed. While my 24 year old son was moving the box springs to the donation box, I decided to slide the mattress to the end of the rental truck. I started to tug on the mattress while moving backwards. Needless to say, I could not stop and wound up on the pavement with a king size mattress on top of me. This is my first recognized symptom of PSP.

Continuing into early 2014, I began to notice that at work I had to hold onto the rail on the stairs to keep from falling backwards, particularly when I was going up the stairs. My handwriting has gotten so small that I could not read it. Add this to my poor work ethic, being strung out on the meds, and I lost my job on August 20, 2014. As it turned out, this may be the best thing to happen to me during this time. I was priced out of the anti-depressant and anti-anxiety medication dependency. I enrolled in AHCCCS (Arizona Health Care Cost Containment System, my state’s answer to Medicaid.) This meant all new doctors. By this time (January 2015) I was tired of falling all the time and being sent to physical therapy because I have 2 discs out of place in my back and my knees hurt all the time from falling. I asked my personal doctor why I kept falling. An MRI showed no signs of a stroke and my doctor sent me to a neurologist. After a battery of tests, the neurologist sent me out for a DAT scan.

The DAT scan came back as “probable Parkinsonism” and my neurologist told me it was most likely “a-typical Parkinsonism”. A short search on Google told me that PSP was probably the diagnosis that I would be given. And then, my neurologist changed his affiliation, and I could no longer see him. My new neurologist was, in my opinion, afraid to give me a definitive “You have PSP”. This cost me my application for disability and the appeal. In March of this year, I went to motion specialist neurologist. She agreed with my assumption, and after a few tests, told me that, short of an autopsy, she would tell the Social Security Board that I have PSP.

Backing up a bit, I was without work from August 20, 2014 until October 19, 2015. Turns out that my former employer had marked me as ‘ineligible for rehire’ which ruined my chances of finding a decent paying job. So I went from $52,000 a year to $20,000 a year after taking about the only job I could find. I had lost my car during my unemployment period, and I currently walk just under a half-mile to catch the bus, and a further ¼ mile from where the bus drops me off to work. And then, after 8 hours, I get to go home in 100+ degrees F heat. To say the last 20 months have been difficult would be an understatement! I had hoped to continue to work until my youngest child is out of college a no longer in need of Dad’s help for college loans. I’m afraid that I will wind up a semester or two short of that.

So, why this last 4 years life story? Well, everyone here appears to have a care-taker. Since May of 2015, I have been staying in a bedroom of a friend’s house. I pick myself up when I fall. I am afraid that one day, I will fall and if my friend is not home, I won’t be able to get up! My youngest two kids are away at college, the oldest child’s girlfriend has 2 kids and is currently pregnant with my first grandchild. The other son has moved to Florida. My wife (I am Catholic, and I still consider her my wife, although we’ve been divorced for over 3 years) has a new boyfriend. He is a great guy, and I hope the best for them. But right now, I feel so lost! I didn’t ask for this! I don’t want to be a burden to anyone! What's a boy (old man) to do?

Thanks for reading this, if anyone made it this far! Humor is about the only thing that keeps me going, besides wanting to see my first grandchild in April!

Bruce

[Satt2015]

Welcome Bruce, although I'm sorry for the need to welcome you! You will find this an invaluable site where you will make wonderful friends and learn just about everything you need to know! You can rant rave and scream away day or night, no one minds, just understands in fact! You will find carers here as well as Psp patients, everyone is here to help and support you! No one will judge. Keep posting Bruce, you've certainly been dealt a very rotten hand! X

[Sayer]

loosbeer, very sorry to read your hitory but. It is headed 'needs advice' but no advice asked for. can we help?

[flicka]

Thank God you found this site Bruce, It will support you and give practical advice. Find out if you have a PSP group anywhere. I am also a Roman Catholic hopefully there are some amusing and kindly people in your church to also give you support. Remember who you are, a strong man with a sense of humour, retain that as long as you are able. Good luck God bless you

[Escada29]

Hello Bruce, am sorry to hear of your situation it must be hard living in a room in someone elses home Ive been there and its a bit degrading to say the least! Have you any plans for longterm or will you stay there indef? Could your friend become your carer? You will need one for your own safety. Sometimes we find ourselves in desparate situations without an answer in sight and I know finances play a big role in how we end up. I do hope answers come for you. You need looking after and it sounds like you have been left out in the cold. Sincerely feel for you.

Sue x

[D0ttieL0ttie]

Hi Bruce,

Not a site where any of us want to be but, because we all have PSP or CBD in common, be it diagnosed or caring for someone diagnosed it is hoped we can share our experiences and information.

I hope that by sharing some information this might help you a little.

My husband and I are in the UK and very recently we saw a Professor at the University of Cambridgeshire, he is an expert on PSP and the Lead in the UK. Anyway during our lengthy and thorough consultation he showed us my husbands brain scans, the first in 2013 (Geoff then 61) and the second in 2015.

In the middle of the brain is an area shaped like a Kingfisher bird (yes true I saw it)! and this area is part of the processing machine in our brain. Anyway, the shape of this 'bird' changes in PSP and is one of the definite diagnostic factors that help to diagnose PSP.

Added to that. of course, there are the symptoms you have listed.

It is not unusual to be diagnosed initially with Parkinsons or Fronto-Temporal Dementia (that Geoff was initially diagnosed with) and is dependent on how PSP initially presents.

If is presents as you describe, the Parkinsons is a likely diagnosis, when FTD is diagnosed this is because you present with Behavioral changes.

The symptons then 'Morphs' into PSP and so can be difficult for professionals to get the diagnosis right at the start of the disease.

I am so sorry to read your story and hope that your children will be able to support you.

Good luck with your journey and stay with this site because it is good for many many reasons.

Take Care

Pam

[Hidden]

First sorry to hear of your diagnosis. Welcome to the club no one wants to belong to.

Don't know who your neurologist is affiliated with. They should have you in physical therapy as well as speech and maybe occupational therapy.

Exercise is the only real treatment for this disease.

I think you may qualify for Social Security disability with access to Medicaid. Your neurologist may have a social worker to help you with that.

If you have any questions post them on this site. It is a good source of information.

[steph02]

hello bruce

I too was diagnosed with atypical Parkinsonism in 2009 when i was 60thuia was changed to atypical psp in 2013 . now there are different types of psp some are more devastating than others I have pure akinesia with fog,which apparently is not as bad as the other types. I can still look after myself generally although walking has been a pain recently and i have to be careful when swallowing food so it doesn't get stuck. I fall about 2-3 times a day but now i consider myself an expert on falling without hurting myself. good luck on your journey.

[Althea-c]

Hi Bruce, WELCOME .. we may not have all the answers, but we are here for you.

Divorce is a terrible thing but an unhappy marriage is worse.

You can now cope with your PSP without the extra stress of your past relationship.

Seems your children are old enough to be of some support.

We are in South Africa and Med Aid is different from yours so I can't assist.

I can advise you to start looking for care as you can't do this on your own.

Wishing you strength and love.

Please stay in contact with this group.

Althea 💛🙏

[ketchupman]

Hi Bruce. You do indeed have a sad story. I pray your friend will be a true friend and help you in the coming months. As far as Social Security, now that you have a physician that agrees with a PSP diagnosis, you need to refile and document when you were first was diagnosed with Parkinson-type symptoms. My wife was diagnosed with regular Parkinson's on 01/04/2010 and it was't until 03/15/2011 was she correctly diagnosed with PSP. But when the SSA processed our application, they used the 01/04/2010 date as the starting date of benefits. There is a 6-month waiting period. But then we got back pay of almost a year's worth of benefits. Normally there is a 2 year waiting period, but PSP is one of the diseases that they have on a fast track. You still have to wait another 2 years following the 6-month waiting period date to become eligible for Medicare, which is unfortunate. But it sounds like you may be eligible for Medicaid, which may provide better benefits than Medicare. Not sure. Wish you best wishes.

Ketchupman

[daddyt]

loosebeer. Long and wordy try reading my blog. I'm sorry for your circumstances, but I'm glad you found this site. As far as PSP goes, the health profession in general have little to no knowledge about PSP. This site will provide you actual information and support relevant to PSP, you can also visit CurePSP.org to find out more. But, as I stated these are real caregivers with a loved one struggling with PSP and even some with PSP, like myself.

[jillannf6]

I AGREE WITH WHAT HAS BEEN SAID

LOL JILL

XXXXX

[Katiebow]

Welcome Bruce it sounds like you need this site to give advise and keep you sane. You certainly have been through a tough time and it must be very difficult for you. I am a carer for my husband and well remember him going to work when he was not really able to do his job properly, this was pre-diagnosis. It must be very difficult for you to do the everyday things you need to do along with getting to appointments, fighting for benefits etc but you s no like you are quite a positive person and that helps.

I find site is great for info, support and chance to rant and I hope you find it too.

Take good care of yourself and best of luck with the benefits

Kate x

[Yvonneandgeorge]

Bruce welcome from me as well, my husband was diagnosed in 2014, horrible illness to have but everyone is so lovely and helpful on this site. Sorry to hear about your divorce, at least you have a good friend to stay with. George was also told about the hummingbird when he had the scan. We go into London and see proffesor Morrison, who is amazing, always there if needed . Yvonne xxx

[41273416a]

Dear Bruce,

What a sad story to read, let alone, live. I am almost 72, but have always felt like I am many years younger. I quit the job I loved, as an R.N, as I was falling down at work and couldn't think as a ICU RN needs to do. Yes, we have a caregiver for me, as my husband was afraid for my safety and for those around me. Yes, we pay for it, but we have planned for retirement and this is what we got in our later years. No, we never go out, never go to dinner or on vacations. We buy so little, only what we have to. PSP is our entertainment! Oh my....not what we want but it is what it is. I wish you luck and peace, and do hope your life becomes easier.

[JantheNana]

Bruce,my heart goes out to you! I was caregiver t my husband with PSP up until his death just 2 months ago.It is hard to imagine you living without someone to care for you.During his last 6 months,he was still able to walk,unlike many with later stages of PSP,but I had to walk with him.If I held his hand or just put my hand on his back,it was enough to keep his balance and prevent falls.But without help I don't see how you could go on in the foreseeable future.Don't mean to scare or discourage you,but this disease can get nasty. Blessings to you! Janet

[Kevin_1]

Hello Bruce

I am fairly speechless about how tough things have been for you.

For what its worth a brain scan is fairly cast iron for diagnoses purposes. However the symptoms of PSP are so characteristic out first neurologist picked it up with just watching Liz's gait. Two afternoons of tests including measuring the slow eye movement circades. Lft him in no doubt. He was a PSP specialist though.

Anyway... Enough of that.

I would welcome you here and hope that you will get plenty of support. Though my greatest concern is that you have real practical support, but I don't know the systems in the States.

Warm welcome

Kevin

[loosebeer]

OK, Folks, here is an update. I've been living with my oldest son and my grandson for 2 years now. I no longer work, and I get Social Security and disability. Apparently, the government did not believe my neurologist, and set me their specialists, where I found out that I also have Scoliosis. I was on the Biogen clinical trial for 2 years, until they stopped it in January of 2020. I still can talk, walk with a walker. I eat whatever I want, although my nose runs When I eat.