I was diagnosed with PSP 7 months ago. Wow. Seems like 7 years ago. This picture is of my Dad and my oldest daugher, Katy, a week before he died fom cancer the summer of 2010; I refer to my father's experience of dying in this blog.
I have patiently explained what PSP is, or what the difference is between Parkinson's and a Parkinson's Plus disorder, and specifically, PSP. I also referrenced several links to those close to me to become informed with what is, where I'm at, and where I'm heading.
My diagnosis was not embraced well; I expected that. I'm youthful 54; my girls are 21 and 20. We had one direct conversation about it in the beginning, with smaller discussions as some of my symptoms have worsened, etc. They are freaked-out about it and I get that. My oldest, Katy, has special needs and I've been her touchstone for just about everything. I know she is very scared about losing me, as is my other daughter, so I've opted to stay strong, share less, and allow them to feel as happy and secure as they can, until I have another regression of signifcance that will require discussion.
The others in my life, family, my Mother, friends, are perplexing me & starting to get on my nerves. I have not been overly emotional about my chance of fate, and reserve my worrying and emotions to myself, my best friend, my therapist, and my Doctor.
What I've been experiencing with others outside those mentioned is reverse empathy, if that makes any sense. They become so upset about my illness, I find myself comforting them and telling them it's going to be okay...yet it's starting to get annoying.
The only thing I can compare it too is the passing of my Dad who had just turned 73 the summer of 2010. He was diagnosed for the 1ST TIME with stomach & liver cancer and was at end stage 4+ on 6-30-10, and passed 8-2-10, cognizant right up til the end. He lived a distance away, wouldn't have anything to do with hospice or hospitals, so my sister and I divided the week carry for him, or the minimal amount he'd let us do for him.
Time and again, I heard him over the phone reassuring/comforting family members who called him, and/or reassuring/comforting friends who'd stop by on a daily basis. It was surreal. I felt frustrated for him. I thought "his dying is HIS experience, tho deeply affecting so many others, but he's the one it's happening to". Get what I mean?
One night toward the end, we were sitting on his deck in the evening in rural northern MN watching the wildlife he cared so much come into feed. Deer, which he always put food out for & called "My Ladies", a family of fox, a generations of chipmunks he feed peanuts to that were so comfortable with him, they'd climb on his lap and retrieve the nuts from his shirt pocket.
He turned to me and said, "You know what I'm getting tired of? Trying to make people feel better about what is happening to me; it takes a lot of energy."
Human nature I guess, but now I understand fully what he meant by that. I can't fix someone's feelings about what's happening to me. I still need to get focused and centered on my own feelings about this and doing all I need to do to live well and slow this down. If I provide resources to others to become informed with what I'm experiencing,t besides what I verbal to people, please read it so I don't feel like I have to start over with explaining it.
Has anyone else felt this way? Am I being on the harsh-side with those close to me in my life? I'd really appreciate some input.
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JudyJ
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How eloquently you explain your feelings. I am sure the many relatives of people with life limiting conditions will be grateful for this insight. Hopefully, they will also bear it in mind when they have discussions with their relatives. It is hard though, as if the relative puts on a 'British stiff upper lip' it does not make for an honest conversation. This may inhibit the person with the condition from being honest and open about how they feel, and that would be worse than them feeling responsible for helping their relatives with their distress. Do you agree? I hope you continue to get something from using this site and continue to post as I found your post very moving, but helpful.
hello wanted to tell you that I enjoy reading you, I think you express your feelings clearly, something I feel you're frustrated because you're the patient and you are the one who has to encourage others and that must be exhausting, I'm young I have 37 and I take care of my sick father with psp (83), is exhausting when you have children around, I went to a psychologist because none of my family accepts the disease, and do not want to see him ill nor take care as I do, the psychologist told me that some people do not accept these things and prefer not to see the reality, it's hard, I m completly alone,my husband works a lot, my father lives in my house, and took care of him 24 hours a day, I only want tell you is this disease will be hard but if you think only on fighting and rehabilitate the part not affected your life will have more quality and dignity, tell your family that you need not feel sorry or pitu for you...but the strength to continue, is what I do for my father , stop feel sorry for him and now I focus on rehabilitating the unaffected part, i stoped being his daughter and now I am his caretaker its hard for me....please take care about you....you need a lot of strength i whis a long a peacefull life hugs from spain ( sorry my english ) whata beautifull words of your father...he was right !
I know what you mean very well ! My sister 63 years old , dealt with the onset of PSP without any meaningful help for the past 3 years (at least), because the doctors in her area (PA) were worthless. We brought her here to NY where she was finally accurately diagnosed in November 2012. She'd be writing this to you if she could, but one of her earliest bothersome symptoms which has gotten to the point where she can't type any more, has been blurry and worsening vision (from weakening muscles that control eye movements) . Of course she has all of the other classic PSP symptoms , but is still able to walk without much difficulty and her balance is pretty good also as long as she's on stable ground. She's always been super self reliant , independent, and very outgoing , so it's devastating of course to be dealing with and facing this illness. She's meeting it head on and is doing everything she can, to stay on top of things. More than anything else , it ticks her off ! The right attitude , in my mind also ! She's living with me and my husband now and we're in the process of putting her house/home up for sale, and bringing everything that is important to A. back to LI, NY . Major upheaval for A. and us , but I'm so grateful that we can do whatever we need to do to help her. We had always wished that we lived closer to each other. Who would believe that this would be the reason !
It's hard to believe that there was a time when we had no clue that PSP existed ! Unlike you , A. has no children , which must add a lot more stress to what you're having to cope with already. As if dealing with the physical and psychological impact personally isn't stressful enough for you to grapple with ! We've also been employing the " reverse empathy " continually with everyone who we know , as they respond with shock, sympathy , and disbelief when told about A.'s progressive illness with all of it's debilitating symptoms.
I guess that strong willed , no nonsense , realistic people don't feel that it's very helpful to dwell anymore than is necessary on how horrible it all is ! As A. and I say , " A's living with this illness , she's not dying with it." We end up saying things like, " It really stinks" , and" it's so surreal" , or as A. might say, " I've been better " ! She/we generally thank people for their well wishes and their expressions of concern and offers to help in any way they can, but it just isn't in her nature or mine to engage in a " pity party " . In fact, it is really irritating past a certain point when you deal with people who just can't stop with the " Oh how horrible ! Poor thing" ! approach . It seems as if some people actually think making their illness their life is appropriate. Some people seem almost offended or even disappointed when you don't fall apart ! Maybe it's because they're pretty fearful about all of the unknowns in life themselves and project that onto you ! Typically I think that people who know and love you find it very difficult and even impossible to accept ! All too often like you said, the ill person ends up dealing with other people's insecurities and fears and reassuring THEM ! Mothers typically seem to be in that group of people who often end up receiving more of your time and energy because they have difficulty coping with their child being so ill . Being elderly and facing(or not) their own mortality at that point in their lives might also add to their less than therapeutic behavior !
In thinking about how you might be able to help your daughters to understand what's happening and to encourage communication and mutual support , maybe you and your daughters could see your therapist for some joint counseling sessions in addition to your private
sessions , to encourage them to voice their fears and concerns. If your therapist is not willing or able to meet with you and other people of your choice in a joint fashion , there might be another qualified person that your therapist could recommend.? Also letting people who get on your nerves know how you feel about their presumably well meaning but not at all encouraging or positive behavior is a good idea also, I think. Always being upbeat and therapeutic to others is definitely draining ! That's for sure !
By the way, your Dad sounds like a really great person . You seem to have inherited his straightforward , honest way of dealing with life. I think that kind of person appreciates life and is well balanced. They seek help when they feel they need it , enjoy the road that they travel in life, and understand that nothing lasts forever(at least on earth) !
I'll read your email to A.. I'm sure that she'll relate, and identify with what you're going through. Thank goodness for those people in our lives who we can just be ourselves with and they "get it " ! A good and caring doctor or more, really makes a positive difference too ! We saw our share of idiots before finding the competent doctors that A. has now. We're here if we can be of any long distance help and we send positive thoughts and best wishes your way. Take good care, Elise ( and Adrie )
I think it is a natural reaction to reassure someone who shows sympathy toward us. Yes it can be annoying but I think it is a natural reaction. Can't think of another response that makes sense. If you think of one let us know please. I ordered some cards from the PSP association that on the back explain about PSP in just a few words. They explain PSP is terminal, cause is unkown, symptoms (brief), effects, no treatment and no cure, number of people with PSP. I hand one of these cards to those who ask about PSP instead of explaining the entire thing. I'm in the USA and the card on the front is designed for the UK group but it doesn't matter. I just tell them to read the back. Works for me very well.
I don't inform family on a regular basis unless something significant is taking place. My wife has PSP and we don't discuss the bad things that happen and just dwell on the daily routine. I'm not sure she knows how rough the PSP road ahead will be and that's fine. If we talked about it all the time it wouldn't change anything and would be depressing to us both. Just my thoughts. We are taking one day at a time and one issue/problem/challenge at a time. We make adjustments as needed without discussing the next thing that will happen, if her PSP is fast or slow type, how much time she has left, which PSP type she has, etc. Those things don't help in handling the process required day by day. Those things can be defeating also. I wish you the best in dealing with family and friends. It is difficult but they mean well I'm sure.
Thanks for more of your input. I, too, do not inform those close to me unless it is something of signifcance. For example, it was unavoidable not to tell my daughters & a few others close to me that my Doc started me on 2 powerful meds 12-19 that knocked me on my keister for a good 3 weeks thru the holiday season. I am finding myself more guarded telling even those close to me who I know can handle it what's going on. Because I did some researching at the onset of my diagnosis, because I felt it was my responsibility, I know how bad it can get. I regretted it at the time but no longer do; it helps me stay motivated to slow it down, as well as appreciate every good day I have. If your wife doesn't seem to realise what will happen down the road, it might be the best gift you can give her to let it be. I've been divorced for 12 years and have 2 daughters, 21 and 20. My oldest has special needs so I felt extra motivated to find out all I could so I can plan, not only for myself, but for them, and especially my oldest. Also, during 3 consecutive visits with my Neuro, he coudn't emphasize enought to get my affairs in order, get a will and health care directive; words you never want to hear from your Doc. He is NOT Dr. Doom; he's a wonderfully compassionate yet realist doctor who insists I ignore stress & focus on living well; better than I ever have. All the chapters left in my book of life our just being written. I do believe there is purpose in everything, even the unpleasant.
One thing I ran across in planning ahead is that the companies holding my wife's IRA accounts REQUIRE special forms in order to invoke the Power Of Atty. With one of the companies it's not as simple as sending them a copy of the POA document. So I'm going to get her to our lawyer and have him help us fill out the "special" forms from the investment company. I'm doing this so that if I need the funds in her IRA to offset medical or other costs down the road I won't have to worry about it. It will already be done and in place. Something to think about before you get too far down the road in your PSP travels. You wouldn't want a delay in your POA person being able to get funds to help you. If I hadn't asked the companies holding the IRA's I'd have never known special forms etc are required. Best to get that all resolved and in place while my wife can be aware of what is being done. You never know what some family members will do when money is on the line. Not trying to be negative, just thinking ahead. Guess that's the Computer Systems Analyst from my work days coming out.
I don't believe in coincidences; you're timing about POA is perfect; here's why. The day I was given my diagnosis, my doc stressed the importance of immediately assigning POA to someone, creating a will, health care directive, and get all of my unfinished business finished. Very hard words to hear. Also said the same thing the next 2 visits. Since August, I've been cleaning up some messy debt, moved into a one level home in October, & have been delegating needed repairs to my former home to get it on the market to sell. One of the things I haven't done is assign POA. My Doc & my therapist have continued I insist I get it done; if I should lose my mental capacity via accident or illness, it's too late. I've had several discussion with my attorney about who to give my POA to, etc., & spent countless hours thinking about it vs. doing it. Today, my best friend is in town from IA to help with some things at the old house. I had decided over the fall that she will be my POA (she accepted). My younger sister would be the only one in my family that would be able to be my POA, but she's still handling my Dad's estate and the politics in my family are thick So I wanted to keep it out of the family. My attorney didn't think that my friend living out of state would be an issue. I told my Mother about this decision yesterday; immediate negative kick-back. But I drew-up a statement that my friend is to be my POA and we're getting it notarized today, and send to my attorney to be finalized. I've had a couple of scary PSP related incidences over the last 3 weeks that finally told me "it's time". I'll do my best to stay ahead of the family politics; they can be the worst sometimes, cant' they?
Don't forget to check with any financial holdings you have such as IRA and anything else to find out if anything other than the POA document is required for your POA person to get access to the accounts. It's just good planning. Also, on another topic, I heard of a family where when the PSP person passed on the relatives swooped in and started removing things from the home without informing the POA. If you have a troublesome family you might want your POA only to have keys which might require changing the locks if family members have keys. My family situation is fine but yours may require such action. You may want to make a list of "special" items you want to go to specific people and give a notorized copy to your POA person. That way items go to the people you want them to go to. Another option is to give them the items yourself before death. This gives you some satisfaction and enjoyment from doing it. Sometimes families force people into drastic actions. It's a real shame this happens.
Thanks again for sharing more of the 'nuts & bolts' of this process. My friend & I did accomplish early Saturday morning getting my draft of her having my POA to be sent to my attorney by a notary at my bank. While there, we completed all the paper work specific to her POA on my bank account. Much more to do in terms of cleaning up loose ends, but sure felt a lot better with just the POA being done.
I HAVE BEEN DX IN NOV SO AM NEW TO THIS SITE - THOUGH I HAVE BEEN ACTIVE ON THE SISTER SITE FOR PD AS I WAS TOLD THAT IS WHAT I HAD - SO I HAVE BEEN LIVING WITH DRUGS FOR PD WHICH DID NOT WORK FOR NEARLY 3 YEARS - # YOU MENTIONED BEING ON ADRUG WHICH KKNOCKED YOU OUT - WHIHC WAS IT PLEASE?
Well 2 actually. I started the Fentanyl patch for chronic pain, but at the lowest dose, 25 mg. I was pretty out of it for the 1st week but 'grew into it' over the last month.
The other is Namenda, a memory medication. My short-term memory is junk. My Neuro said it is often used for patients with Alzheimers, tho I don't have that.
I had much trouble adjusting to the Namenda. I got a month's sample packet. Started at 5 mg. the 1st week, 10 the 2d. When I got to the 3rd week, 15 mg., I really felt it, not in a good way. Same with the 4th week, 20 mg., which is the theraputic dose for me.
Almost quit it the 3rd/4th week. I was so out of it & wobbly when standing. I called them "my stupid pills" because that's how they made me feel; couldn't put a whole sentence together etc.
Feeling much better now & glad I stuck with it. I'm positive it was the Namenda I was reacting to and not the Fentanyl patch. It only took a week for me to adjust & become functional with that.
My Neuro said Namenda is a memory med with the least side affects...I'd disagree with that, at least in the short term. If I was still experiencing that stuff, I would've stopped taking it.
I'm overwhelmed & so very grateful for your responses. Like as quickly as flipping a switch, I suddenly do not feel so isolated with all of my thoughts about this rattling around in my head with nowhere to go. Seriously, thank you.
Anne-Cliff: You made an excellent point and one I've thought of even before this diagnosis. By nature I'm plucky, resourceful, and spirited. It's mainly worked for me, sometimes against me, but it's who I am. I've lived a charmed life, to the good, and the not so good, and have often found myself in very difficult circumstances. But because of my personality, was always able to grab the tiger-by-the-tail and come out on the right side. Often those close to me have said this is the quality they admire most about me. And, I suppose, once again, I'm presenting on the exterior the stiff-upper lip you mentioned. You've given me much to think about again; allowing myself to show my vulnerabilites as has always been difficult for me.
Marusela: Hugs back to you. I know how hard it is to be the caretaker. I also know what it is to be alone and being the burden-holder. You'll be in my thoughts and prayers.
Carehope: Oh, for sure, I've already talked it over with my therapist about bringing my girls in for therapy together, tho I want to wait til I regress a bit further. They understand what's going on. So far they seem to be coping ok or as well as can be expected. My youngest is returning to college next week, and my oldest, who has special needs, is excited about starting a work program with the next few weeks. I think the biggest gift I can give them right now is stability and let them take these steps forward in life until it becomes necessary for the next 'serious discussion'. They are my greatest motivation to be brave, live well within my limitations, and work hard to stave off the progression.
To Jim et al That is a great idea, those cards. And you're right, it's human nature and a natural reaction. Since I wrote this last night, I concluded that perhaps that will continue to happen and expect but minus my frustration, and to compensate by allowing myself to lean on those in my world who are strong enough to take it.
Blessings to all of you.
My heart goes out to you, it's all such a struggle emotionally for everyone. I have often worried that Mum is being extra brave and holding on for us when all I have ever done is chivvy her along to get the best from life while she is here. I too only inform family of drastic changes so they don't get a terrible shock with mum's ups and downs. Her elderly brother (84) refuses to come up from Wales and see her as he can't bear the thought of it. Such a shame as she would just love to catch up with him. Her sister has to gather up immense courage to visit, not least as she can't come often due to distance and being 4 years older (mum is 77) she feels really sad for her little sister. My eldest daughter is in America until February 2014 and gets very emotional every time she comes over to visit as she is acutely aware of mum's frailty. My youngest dearly wants mum to come to her wedding in October but things have been fluctuating so much that it's highly unlikely mum will make it.We are a private family and tend to weep in private from each other but at the same time we are close and support each other.It's one of those tests we should never have to take but the best view is that tomorrow is another day and we count the blessings of a sense of humour and life's little luxuries. I am planning to get counselling as I don't want to burden anyone and need to be brave for mum. We all have our coping mechanisms and you are finding yours. I wish you well and hope things are as best they can be and that you can get a good quality of life as you move along.
I am amazed by your bravery and how clearly you put your feelings across. I wish you well as I know the journey is a difficult one but you sound like you have a lot of spirit and a will to do as much as you can. Remember this is a place where you can express anything you feel and know that the people on the forum are always here for you. Take care
Lesley
Hi Judy,
Wow, you really touched a nerve here. I am afraid I am quite guilty of being the "needy" one at at times. My husband has psp and was in denial for quite a long time, and I think I probably facilitated that by tearing up every time we had a significant conversation in those early days. He kept saying the doctors were wrong, and they had no idea what was wrong with him and would not even consider researching the whole thing. I, on the other hand, became obsessive and relentless in my pursuit of information...hoping he was right and the doctors were wrong. Well, it didn't take long to realize he had this horrible disease and every time I hugged him I found myself sobbing. Then one day he started to broach the subject of what might eventually happen, and as I felt my eyes fill with tears I watched him retreat from his own pain, grow stoic, and reach out to comfort me. I knew then I was stealing what he had a right to feel---his own grief. It must been exhausting to reassure me in light of what he must have been feeling.
In time, I learned to reserve my tears for long hot showers and my rants for trusted friends. I've learned a lot in this journey, and we have come a long way since those early days. My husband is quite limited in his mobility and vision, so the denial phase is long past and I am clearly the caregiver and his rock now. The role reversal is new to us, and at times we still struggle with it. I don't look to him to comfort me anymore, though. I don't want to remember how he had to gather himself and be brave for me. Thanks, Judy, for bringing up this topic. It's worth reminding myself that no matter how bad things get, he shouldn't have to be my rock now---he can't.
Take care of yourself and remember there will be those loved-ones from time to time that just need a gentle reminder that you only have so much energy to do what you need to do.
I have shared this blog address with a close friend who lives in British Colimbia who is struggling with some of the same thoughts you expressed so well. I have wanted to find someone who was going thro psp but never thought it would be one so close! Lucille
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hugs from spain 
) whata beautifull words of your father...he was right ! 
So I wanted to keep it out of the family. My attorney didn't think that my friend living out of state would be an issue. I told my Mother about this decision yesterday; immediate negative kick-back. But I drew-up a statement that my friend is to be my POA and we're getting it notarized today, and send to my attorney to be finalized. I've had a couple of scary PSP related incidences over the last 3 weeks that finally told me "it's time". I'll do my best to stay ahead of the family politics; they can be the worst sometimes, cant' they?
I hope I can figure anything to make my father awake he is sleeping nearly all the day!
Has anyone experienced an altered state of consciousness in people with psp?
He's never cried, is this ok?
IN DENIEL
Choking 
