New To This Forum...

[aswest]

Hi Everyone,

This is my first time to post here. My 69 year old FIL (father-in-law) was diagnosed with PSP about 6 months ago. It truly has been a rollercoaster of a ride.

We started noticing things with my FIL approximately 4-5 years ago. His was becoming unsteady on his feet, he had a slight tremor in his hand, his movements were slowed, and his memory and mental 'sharpness' began to decline. Initially, his doctor diagnosed him with Parkinson's Disease. He was put on Requip and various other meds (Sinemet), which helped only for a little while. As time passed, he began having falls fairly frequently and he lost his ability to drive due to a few minor mishaps. He was having difficulty with simple math calculations, though he'd worked for many years as a bank examiner. He was becoming paranoid about the lady next door "watching him with her binoculars". This was totally untrue, of course. He started hoarding loaded guns all over his house, even under my MIL's pillow! He became obsessed about locking all the doors in his house, even if he stepped out for only a minute. He also had some hallucinations, but that was most likely attributed to the meds his was on, according to his doctor. He was, then, diagnosed with Lewy Body Dementia. At that point, my MIL decided to seek the opinion of another neurologist.

She took him to a movement disorders specialist/neurologist at Emory Univ. in Atlanta, GA. After examing my FIL and consulting with a few other doctors, he came to the conclusion that my FIL has PSP. It is completely shocking to see how my FIL has progressed in a little over a year. In Oct. of 2005, our family took a week-long cruise together. My FIL was able to move about with the assistance of only a cane. He ventured off several times on his own. He did not need assistance with eating, showering, or using the toilet, but needed some help getting dressed. Communication was not a problem, though it often took him a little time to respond. Now, he is mostly wheelchair bound. He can take a few steps with A LOT of assistance. He is extemely rigid, therefore, he can't turn his feet or bend his legs well. He walks on his toes and takes very small, shuffled steps. He needs A LOT of assistance with bathing, eating, using the toilet, getting dressed, sitting, standing, walking, etc. His verbal communication has been reduced to "uh huh" and growling noises. If he does say something, it's usually unintelligible or repetitive. He does not actively interact with people anymore. He drools all the time and holds food in his cheeks when he eats. He has lost a good amount of weight. He is incontinent and wears Depends all the time. He has frequent accidents when he does go to the bathroom. He still has a slight tremor and it can often be seen in his arms, leg, and tongue. He is taking Inderal and that seems to help. He sits with a drooped head and his eyes gaze upward. He can visually track from left to right, but can not track vertically very well. He has a difficult time keeping his eyes open and was just given an injection of Botox in his eyelids to help with that. He has just started to complain about pain in his legs and arms.

It truly has been one of the saddest things I've ever seen happen to someone, and I've seen a lot. I just shudder to think what lies ahead. Do any of you have an idea as to what stage my FIL may be in, not that it really matters at this point? What does the future hold? My MIL, I think, is in denial about how devastating this disease really is. My FIL is at home, so my MIL is his primary caregiver. She does have someone come in 3 times a week to help out. Still, I don't know how she does what she does! They were just here last week for a doctor's appointment and she has to help him with every single thing he does. He cannot use his hands, at all. Does what I've described here sound like the normal course PSP usually takes? Any information you can offer me would be much appreicated. I'm glad I found this forum.

[EAE]

EVERYTHING you said sounds very familiar, with perhaps the collecting of guns and thinking someone was spying on us. All of the other symptoms you described we lived with. It was my mother who had PSP. After my father's death I became her caregiver (Before then, I would go over every morning and carry breakfast upstairs for them, and bring them dinner in the evening. During the day, Dad watched over her) The main difference with Mom was her age at onset. She was well into her 80's and died at 93 1/2.(most unusual) She came to live with me after Dad died (I had a dog and needed the fenced yard) Also, she said their home wasn't quite the same without Dad there.

There will probably come a time when swallowing will become more difficult. I was able to feed Mom all the things she was used to eating; I just put everything in the blender with a bit of liquid (broth, milk, or juice) She was entered into hospice care eventually. When they first suggested it, I freeked out, but after a bit of research, I realized that they would be a tremendous help to me (which they were!!!) Mom lived in my home under hospice care for almost two years. Realizing that there is no cure for this dreadful disease, and its progressive nature, acceping hospice was a great gift to me.

I am indeed sad that your father in law has developed this disease. Any help you can be to your Mother in law would be impoprtant, because 24/7 caregiving can take it's toll. I certainly think it contributed to my father's death, although he would have had it no other way. About your MIL's denial of the disease, I think that too is within the realm of normal. Dad chased speech therapists and everything which he thought would make Mom seem better. Nothing ever helped long term.

I hope I answered a few things. As far as the stages go, I didn't pay that much attention to them, because she'd have symptoms of some and not others. It seems as though each case is entirely individual. I'll be happy to help with any specific questions...also if you just need a shoulder to cry upon, We're here for that as well. You'll not find a finer group of people anywhere.

My best to you all as your family battles the beast we all know all too well! May the days ahead be gentle to you all.

Beth

[glenda]

G'day Beth...thanks for being here & doing what you do best reaching out.
Aswest,i'm truely sorry to hear your FIL has PSP. Beth has been quite acurate with her information to you.My darling father had PSP..dxd in Oct 1994 around 62yrs of age & passed July 2002.I cared for my father for almost 8yrs & as Beth said psp tends to present differently with each person although most symptoms you describe are true to form except of course the hallucinations & paranioa..i do tend to agree with the doctor that the meds were the reason for that.My father did not experience the problems with his eyes forcibly closing rather not being able to look each way/up..down.I do have a friend here in OZ who i met through this forum who's husband (very young in his 50's)has severe problems with his eyes closing.Dad tended to have various stages of swift onset & then he would plateu..i always referred to psp as playing mind games.It would open the door alittle & show itself only to then not be an issue for awhile then when you tended to become comfortable BANG it reared it's ugly head again.You are correct in that it is a hideous disease BUT if you take a day at a time & focus on what is there & now ...you will survive.I tended to get quite focused on the next thing..the what if's..what should i do next...am i doing it right.I then took a step back & realized it was pointless..i couldn't change it BUT i could make the days dad had as happy,filled & laughable as possible.Oh i had my many moments...out round the back in tears..frustrated,angry but my beautiful father never complained so i was left to be very mindful of all i complained about in life.Don't worry about the future...live each day with an abundance of love & laughter best you can...it won't stop the ache nor the fear or the tears BUT it will help ease the pain of what you are going through.Please know you will be cared for here deeply,come back & share your load when you need.We have travelled your road & survived....no amount of words will ease your fear however it makes the journey that little bit easier to bear.I have come to know some of the people here for over 10yrs now..they are my dearest friends,it has created a bond that even our own siblings/families find hard to understand.Take care & God Bless.
Glenda

[aswest]

Glenda and Beth,

I can't thank you both enough for your replies. I am sorry for what you both went through with your LOs. I know from all I've read about PSP, it won't be an easy journey for our family to make. I have lost my parents and a brother in just 6 years, so I know that we will survive. You have to take it day by day, moment by moment.

I think, at times, it's often harder on those who don't see the PWPSP on a daily basis, because when you do, the wind gets knocked right out of you to realize how much more they've declined. I'm always amazed when my husband makes comments to my MIL about how much weight my FIL has lost or how he thinks he's doing worse than before. She almost always responds with, "Do you really think so?" I believe that comes from being around him everyday and the changes aren't as noticeable. Does what I've described about my FIL seem in-line with what you observed in your LOs, in terms of progression? It just appears that my FIL has taken a rapid nose-dive in just over a year. He is such a changed man. Never laughs or smiles about anything anymore. It's as if his personality has been sucked right out of him. His face shows absolutely no expression. His neurologist recently said he's going to put my FIL on an anti-depressant at his next visit in July that has an upper in it. He said that might make him more alert, but I hold very little hope for that happening. My MIL keeps asking him if there is anything my FIL can take to make him more interactive with people. So, I think sometimes the neurologist may say things just to keep her pacified. I believe his lack of interaction is the normal course of the disease. Did your LOs lose their interest/ability to be social with others?

I have tried hard to convince my MIL to look into Hospice, but she's extremely resistant. She, first of all, associates it with immediate death and, secondly, she's afraid it will drain their assets. I know that she needs more help than what she's getting. As I stated before, she does have a caregiver (who knows nothing about PSP) who comes in 3 days a week for 8 hours to bathe my FIL and whatever else he may need. My BIL lives just down the street, but he has a 9-5 job through the week, so he helps on a pretty limited basis. He does devote most of his weekends to helping with his father. Nonetheless, my MIL has way more on her plate than she should at 69 years of age. This whole thing has already aged her so much. I worry that she hasn't accepted the disease for what it is. She keeps saying how she'd like for all of us to rent a beach house together next summer. If my FIL continues progressing like he has, he may not be able to travel at all, or he may no longer be with us. She, also, says how she wants to come back here to do some fun things, other than doctor's appointments. At this point, it is virtually impossible to take my FIL out to do anything because he needs so much assistance with everything. My heart breaks for him, but it just isn't feasible. Plus, any activity wears him completely out.

I'm sure I will have many more questions to ask you in the days and weeks ahead. I ask for your patience and understanding as I struggle to put all the pieces of the PSP puzzle together. Thank you for listening!

April

[EAE]

April,

I was glad to see that Glenda had given reply to your note as well. One MAJOR misconception that your MIL has about hospice is its cost. I assume your FIL is on medicare, and it covers hospice 100%! I too assumed it meant death was to come soon, and realistically it is meant for 6 months prior to death, but as you could see Mom outlived that prediction. It would give her some help which wouldn't break the bank, because he's already paid into it.

The disease, from my perspective, tended to level off at some stage, but then drastically change, then level off again. I'd often talk about a "new normal", which I'd get used to and then find something else I'd have to adjust to. I was fortunate in being the daughter, thus one generation younger in her care. But, even that, being in my late 50's at the time of caring for her it took its toll. Late 60's would be all the harder. I was also fortunate that my mother was a smaller woman than I and thus I was able to totally lift her when the time came.

Mom lost the ability to interact, because she lost the ability to speak so that others could understand. She LOVED interacting with my dog...I think she knew the dog couldn't talk either, so they had a great bond. (Plus the dog knew exactly where to sit, knowing food was about to drop from heaven!!) She eventually lost the ability to laugh at her favorite TV show...I kept playing it, but I can't say she found enjoyment in it. I played calming music and she liked that.

I'm glad there's someone down the street. There may be a time when your MIL won't be able alone to get her husband off the floor because of a fall. I always had to call the fire department. I'm make sure she knew she could call on that person at any time on the night (realizing he works during the day) If he could pop in, even for a few minutes every day, it would mean the world to your MIL. Having someone talk so you could understand gives the brain straining to understand a much needed break. Also, he'd be able to evaluate the situation on a daily basis.

I found quite the opposite in terms of my understanding Mom's condition. My siblings would come in and see her clean and comfortable. I knew how much more it took on my part to create that picture. They wouldn't see any change, but I KNEW there had been one..

Well, I must be off to work... I don't work as late tonight as yesterday so I'll check back later this afternoon. Again, I'm so sorry you have the need to be here, but you've found a supportive place on the net..

Beth

[glenda]

G'day April,
The expressionless face is a typical of psp..quite sadly to say.I always tended to say that psp took everything it could BUT it couldn't take the twinkle out of my fathers eyes when those he loved stood before him.Dad also became anti social at first..i think mainly because he could no longer communicate or that others found it difficult to understand him.We had a thumbs up for yes/down for no,tried various gadgets but his dexterity was poor...and i made a book for him with simple questions related to day to day things/needs BUT most importantly this book told of his life/likes/family etc,topics so to speak for others especially carers to have something to talk with/to dad.My father understood everything said he just had no sound in his voice.This book told of who he lived with,his wife/childrens names..his favourite music/tv shows/footy even that he enjoyed a good dirty joke ! It would distress me that people assumed he couldnt talk so didnt understand.His book also had loads of info on psp for others to educate them,a list of contact numbers eg doctors/family etc.I know the hospital/ambo's etc loved it.It was important to me that dad remain apart of life ! even though he could not express what he was feeling..the depression is apart of psp & although dad often denied it.. i'm sure it was a natural feeling after having your life robbed away from you.My father was an extremely proud man..he worked all his life, 3 jobs at one stage to feed his young family of 6 children.2 campaigns of active service in Korea & Malaya.He adored my mother who he met at 19yrs of age,she 15yrs.They passed 13wks apart at 66yr & 70yrs.I miss them dearly but oh i give thanks they are together.I sit here head phones on listening to their song....Have i told you lately i love you (Van Morrison) how perfect the song & you know that's what it is......LOVE the love we have for each other keeps us/holds us...makes us strong beyond our beliefs...that is the one thing psp CANNOT take away from any of us.! Stay strong & know we are close by should you need us.
Glenda

[striplet]

Hi Everyone,
This is my first time here. My mother has been diagnosed with PSP, and I too have found her course to be similar to ASWEST. When I read your description of you FIL, I thought I was reading about my mom. She too developed paranoia and hallucinations at times. It is hard for me to understand that approximately 6 mos. ago she was walking independently, then needed a walker, and now is in the wheelchair most of the time. When she does walk, she needs the assistance of two people. She also fatigues very, very easily.
It is horrible to watch her life being stripped away by this awful disease. I kept taking her to the doctor hoping to find the cause and a cure for her symptoms. I am now realizing that there is no cure and am trying desperately to make her life as happy and fulfilling as I can. She seems to have good days and not so good days. I cannot believe how this disease can fluctuate so much. However, even with the fluctuation, I can see the steady decline overall. My heart aches everyday, and I find myself filled with sadness and frustration that I cannot help my mom get better. I know though that I have to think of her and let go of my pain and anger so I can help her live the best quality of life she can with this horrible disease. My heart goes out to everyone who is stricken with this disease as well as their family members who must watch this disease slowly strip away their loved one physically, mentally, and emotionally.
Striplet

[glenda]

G'Day Striplet,
I'm sorry you have had to visit here.........PSP can be a very scary road to travel.You describe the emotions quite well....frustration & helplessness are probably the major discriptives for the carer.To watch a loved one with PSP is at times a very emotional journey.I remember when my father was diagnosed with PSP i was terrified,although we had a most wonderful Professor who had seen PSP before & he could enlighten me somewhat he couldn't put me in touch with anyone close by who i could talk to.That is until i found this site.I remember Professor believed my father had PSP for probably at least a year prior to it showing enough symptoms to be noticeable,it seemed after the diagnosis to accelerate quick alarmingly but Prof said it just looked this way & that dad didn't need to try to hide it now.My father tried desperately to cover up the problems he was experiencing so we couldn't see he had a problem.My father experienced balance problems first off...he had the usual gait & posture problems associated with Parkinson but no tremor or shaking.He had long periods of nothing changing,it was like psp played mind games.....nothing would change for a longtime then when you got comfortable something major would happen.I would often refer to how PSP took just about everything from my father but it couldn't take the love from his heart or the twinkle & smile from his eyes.You are right to focus on loving your mother each day & to make the most of each day...please know you are not alone.Here you will find support,guideance,love & friendship.....we have travelled your journey & although not an easy one the bond shared here helps to lighten the load.
God Bless & take care.
Regards,Glenda

[EAE]

Dear Striplet,

I join Glenda in welcoming you here, although I sincerely wish you didn't need to seek us out. Although this forum isn't as lively as it once was, I guarantee there are caring individuals who will be more than happy to lend a shoulder to cry on, act as a sounding board, and give you the support you need as you face the beast we all know as PSP. It was my mother who had PSP as well and my best advice is to enjoy each day as best as you can. Yes, some days seem to have dramatic changes and then there is a plateau. It seems like PSP always wins, but I'd add my take on it...but giving me some wonderful friends, PSP did not win! Be strong, and when you can't rely on us to be strong or you... please know that we care...

Beth