I'm so angry at PSP.

[JudyJ]

Finally, after 7 months of being diagnosed with 'it', I just lost it last Thursday and Friday. I mean flat-out got the angriest I've ever been in a very long time. It consumed me, ate me up, and spit me back out.

My oldest daughter, Katy, age 21, has special needs but is generally high functioning. She burst into tears Wednesday evening, stating how worried she always is about me, especially if I'm up doing things for fear I'll fall.

She also stated how "bored-to-death" she is because she feels trapped & isolated because my illness limits me much in terms of going out...to do anything...my energy level is slim-to-none; my driving skills are diminishing; and frankly, I just don't feel like doing much of anything. Katy chose some time ago not to pursue getting a driver's license because she believes a few of her disabilities would make it unsafe for her to drive.

When we moved late last fall to a different county, there was a waiting period for her to be a resident of this county to get social services which process we're just starting now; there are a few job programs she wants to get into that provides transportation to/from, but it's a matter of much governmental paper-work, and a slow process. But there's hope that her isolation will come to end soon.

But in the meantime, we both feel stuck. And, she has every reason to feel stuck. But to see her burst into tears which is very unlike her, and for her stated reasons, broke my heart in pieces. I validated her feelings 100 percent. I told her she needs to let me worry about my PSP as much as possible and not be so afraid. But she's seen too much.

We both had a long cry about our circumstances. I did my best to reassure her but don't think it helped much. And I felt a lot of misguided guilt and shame. Goes back to a former post...why am I not trying harder?????? I have a vulnerable daughter who doesn't deserve to be locked in as much as I am with PSP. But she is. That's a fact. And, there are very few in our circle that can pick-up the slack to take her out, or that she feels comfortable going out with. All of this has gotten harder on Katy since my other daughter went back to school and lives on campus.

Thursday morning, I woke up mad as hell, truly mad as hell that I have this awful thing. I had enough pre-existing health problems that made it hard to function, but toss this 'it' into the mix, and I feel like I'm on a slow fade. Like my lights are blinking on and off. Some days going to the bathroom takes planning and organization.

But I finally allowed myself to feel mad that this has happened. I'm not one who believes in questioning God 'why he's allowed this'; I've always believed what is unpleasant or seems undeserved is an opportunity for growth. I am just so mad at 'it'. Mad, mad, mad.

My best friend came into town late Friday to help me with much. She has my power of attorney; we're meeting with my lawyer early this week to get it finalized, as well as start on my health care directive and well. Super happy stuff But it is necessary and it is time. I feel 'it' excelerating on me. She's also going to my Neurology appointment with me to meet my doc, and get a better understanding of where I'm at. I have a list of ?'s for him. New symptoms, and an acceleration of existing symptoms.

And to help with the move that never ends; my God, moved 10-18-12, and the people in charge of the rennovations have driven me crazy and I feel the project's been hijacked. I set-up an appointment with all involved and she went as my representative. God bless her for it. It's become a hot mess. And, items that have come over from the old house are still not unpacked and organized. She's helping with this too. Tho, I just don't feel I have the energy to help much.

I'd do just about anything to get just a little bounce back in my step. Anything. I've just read the post about coconut oil. I will for sure try this. Is it available at a drug store along with other supplemental types of things. I did start the Co Enzyme Q-10 a while ago; haven't felt much change, but admit to not being consistent with taking it everyday.

Love to everybody out there in my PSP world. I would be so worse off without you.

Judy

[jillannf6]

hi judy

so sorry you r feelign so low

it will pasS hopefully

i cannato say more than forthe 1st time i haVe been glad i did nto have children as they woudl have seen em goign downhill

lol JILL

amd big HUGS to you and your 2 daughters

[MarilynMorgenstern in reply to jillannf6]

Judy, my heart goes out to you. I lost my beloved husband of 50 years a year and a half ago and not a day or night goes by without my feelings about this dreadful disease haunting me and praying that they find something to treat it with or better yet cure it. I pray for your strength. You must seek out some social services to help you and your daughter. When I got really frustrated I called on Hospice and they are the most unbelievable organization around. They offered my husband music therapy and massage therapy besides PT and OT and it really relaxed him. Good luck.

[JudyJ in reply to MarilynMorgenstern]

Thanks so much for your reply. How hard it must have been for you to watch your husband live the end of his life with PSP. That is what I fear the worst; the affect it will have on those close to me in the later stages, and especially my 2 daughters, 21 and 20. My oldest has special needs but is high functioning most of the time. She's very articulate and a wonderful advocate the disabled as well as herself. With that said, we're deeply bonded because it was obvious from birth she had differences, that took years and years to figure out. From the very start, I just "got her", tho, while most, including her father didn't. This is not meant to diminish the hardship for my other favorite daughter, Melissa. Tomorrow, my best friend of 30 years and I are meeting with my attorney to finalize the power of attorney process, and start working on my health care directive as well as a will. But it's the health directive I want to take my time with and be very detailed. I do not want to be sustained by advanced medicine if the quality of my life is so poor and/or I'm not cognizant enough to know what's going on. I want to make those decisions so my daughters or other family members don't have to do that awful task. I know what I want and what I don't. If I were to ask My Lovelies today, next month, next year, what their wishes would be for me, I would surely hear they would want me around as long as to the end. But I'm confident because of lack of life experience and/or emotional bonds, they really don't or can't know what that would mean. Finally, I'm working on getting Katy into the social service system her as her mandated time to be a resident has passed; this will open a lot of doors to her. I'll go next, when Kate's well on her way into the system. At my Neuro visit Wed., I'm going to ask for PT and Speech Therapy, to help with muscle strengthening, balance, swallowing, and what is becoming rather garbled speech coming out of my mouth. Even the structure of attending to those activities can only bring more positivity in spite of having PSP. I must stave it off, push it back, and quiet down. It's had the best of me for some time now, and now I have to fight back and live in spite of PSP for as long as I possibly can.

Thank you again for sharing your thoughts with your reply.

Judy Johnson

[CyndyLouBlue]

Judy,

Hi. I was the lady who suggested Coconut Oil. Something else you may find helpful in dealing with the emotional side of this is something called EFT. If you have not come across it, EFT stands for Emotional Freedom Technique and is very easy to learn how to do. I have just looked that up and if you lookup emofree.com it takes you to a website where you can learn to do it for free and see videos of other people who have been helped through hugely difficult emotional times by this technique of simply tapping on certain points in the body while speaking simple formulas you are taught that address whatever issues you are having like anger, guilt, helplessness, etc. They explain that the tapping has the ability to "reboot" our energetic system. I learned how to do this on this site, it's free and very empowering. I now use it with my MIL to help her when she is distressed. I tap on her while speaking the things I feel she is experiencing and 9 times out of ten she responds and relaxes. It is something you could learn with your daughter while you are both a bit stuck indoors that might be very helpful now and in the future. It's got nothing to do with "believing" anything, it's just a physical system, not unrelated to acupuncture as it is tapping on the ends of acupuncture meridians, that can be helpful in releasing "stuck" emotions. If you try it I hope it helps you, too.

All best,

Cynthia

[JudyJ in reply to CyndyLouBlue]

Cynthia:

Thank you so much for this information (I posted today I picked-up the Coconut Oil:)). I'm hearing more and more, and from sources outside of this site, about Emotional Freedom and it's concept. I will make use of your link and this porgram. I've always been a sensitive person, tho I've grown more solid in later years, til the PSP hit. Other factors in my life were off-kilter as well which hasn't helped. I'm just beginning to see what a noisy knot of emotion I've got going on in my head. Freedom from some or most of that would be the best gift I've ever gotten....tho I know, as with anything, I have to work at it to get results. My focus going forward is using all resources available to get out of my emotional mind and into my wise mind. That takes a lot of maintenance, as it should, but this PSP thing really whalloped me good. Now it's time to move on and start living vs. existing & worrying constantly. I will slip, but I will get up. That was figurative...if I have one of my falls, getting up isn't so easy...(sorry, humor helps; coping mechanism)

[CyndyLouBlue in reply to JudyJ]

Certainly humour is the one thing that has helped us through this. I do hope that EFT can help you. The one thing they say is that if it doesn't seem to be helping it just means you have not got to the root of the problem yet. I wish you all the best and will be watching the forum to see how you get on.

[NannaB]

Hello Judy J

I'm not surprised you feel as you do with everything you have to put up with. It must be so difficult still feeling responsible for your daughter. As Marilyn says, the hospice do amazing things and wonder if there is one you could contact. My husband has now been to a day centre 3 times and has benefitted from the massages, Christian services with communion , talks about the future and fun activities. It doesn't matter what faith you have, they work to improve your mind, body and spirit. We've had contact with an occupational therapist for 3 years but the hospice has one as well and she has provided additional aids to help. I'm sure they would be able to make suggestions to help your daughter. They also do a series of stress reducing methods that members of the family can work on together. Hopefully if you knew your daughter's future was more settled, you'd be able to cope better. I'm so pleased you have a close friend to help you.

You are in my thoughts and prayers.

NannaB

[Hidden]

I hope that as soon as you have your appointments you get help coming in. I know you are worrying about your daughter but the sooner you get people in while you can supervise vetting them and weeeding out the best ones to get on with your daughter the better. Try to get a good support system in place and you can take each day as it comes, doing things with your daughter and having good things while you can. Because mum was diagnosed late and was already 76 we didnt have time to get angry as we were too busy dealing with it and were actually relieved that we finally knew what we were dealing with.The only anger I can muster up is that of the 'professionals' who repeatedly let mum down and who I had to constantly nag to get things done. I have no energy to be angry and am just deeply sad for all those still battling and for the loss of my lovely mum who was so brave throughout.

Get some help, you won't regret it.

Dianne x

[jimandsharynp]

IMPORTANT: Don't drive. Driving with PSP could cost you and/or your daughter your lives. It just isn't worth it. Although you may not realize it your reaction time is diminished. My wife had an accident because of reaction time. A car was stopped well ahead of her but simply because of her reaction time she didn't stop and damaged the car. Fortunately the person in the car and their car was not damaged. Our car was another matter, damaged quite a bit. That was her last driving day. She said she saw the stopped car and didn't know why she couldn't stop and avoid the crash. WARNING: Remember that with PSP you may not realize your limitations. That's why some PSP patients continue to try to do for themselves and have a bad fall with injury. It's a mental thing I think. The brain on one hand is saying "I've always done that" but another part of the brain is actually in control of that function and it isn't working well.

Jimbo

[jimandsharynp]

Anger is a part of PSP but it must be dealt with and put in the past. It's sort of like holding a grudge against a person. That person is happy and living their life while the other person is dwelling on not forgiving. Which person is being affected adversely by this? Of course, the person who has unforgiveness. Anger is much like that. It will eat you up and spit you out if you let it.

I have empathy for your daughter but she, and you, must realize which of you has the greatest need at this point. Is it you? Is it her? Whose life will go on over the next many years? Yours? Hers? At some point the person with the most need deserves the most attention and support and help. Children can be selfish. Not saying your daughter is but some are. If your daughter staying on campus is near home I think she should be home and commute to school. Again, it's who needs to receive help and support from the other person. Just having her home at night could help you. She doesn't have to give up her life but on the other hand she needs to give you all that she can. Maybe she is at college far away which is fine but if she could commute she would also be an answer to getting the other daughter out of the house occasionally.

I've already put my wife's sons on notice that if anything happens to me they must jump into action to help at a moments notice. They are both out of state with families but I've told them to start looking for assisted living places in their area because my wife would have to move out of our home and be close to them for assistance. Friends can help in the short range but long range requires family.

Jimbo

[bubbie]

hi judy, so soory u are having such a hard time. this is very normal and it only gets harder. my husband has psp for 5 yrs. and im so down most of the time. it is so hard to see your loved one go thru this illness. i went yesterday to a conference here in boca and they had dr.ashlog from the mayo clinic speak. he never mentionrd psp only parkinsons. my group was there from psp and we asked questions and he just said there is nothing out there for psp and he was soory to report this. i came home really down.what are we supposed to do????i go to so many groups and there is nothing .im giving my husband a quality of life .i take him all over. i have help all day and he enjoys his life .i think sometimes that he is better than me. im very angry too . why did he get this and how??? i have a wonderful family and gives me support. your daughters need to go for counselling .it will make a huge diffirence. i see sombody all the time and also take something otherwise i couldnot function. be well and take care of yourself. thats the main thong. bubbie

[Jean_]

Hi Judy,

So many people have replied to you, but I just wanted to say that your post did bring tears. You are really going through an awful lot and my heart goes out to you and your family.

My Dad has PSP and is in the advanced stages. You talked a lot about God in your post and I wanted to say that as a family God that has really got us through this really hard time and he continues to get us through it. We know Jesus and having him in our lives has helped us to cope, whilst taking away the fear of what next. A lot of people say that they would like our faith- but when you really look at the evidence and read the gospels for yourself, it doesn't take much faith at all.

Anyway Judy, I really do wish you all the best.

Love Ruth