Pretty sure most of you will know what I'm referring to here...I've been doing it all of my life; sometimes it's worked for me, mostly against me, at least in the form of higher anxiety and wasted time.
But since diagnosed, I'm finding myself doing this too much again. I'm not completely putting myself on-the-hook for this. Yet. But with PSP, following thru with potential scenarios to the "what if's" can be purposeful in planning now when I'm not as able to down the road with regression.
On Sunday, my beautiful 20 year-old daughter, Melissa, left to go back to college; she lives on campus, & doesn't plan on coming home this semester, which means she'll be back in May.
Privately, I found myself doing much "what iffing" last week. Will I be as cognizant when she comes home? Will I be as mobile when she comes home? So on and so forth.
I didn't dare bring it up to her, nor did she ask any questions. I want her and my other daughter to be as happy and unburdened as possible til I take a shift backwards. Then we will have to have another discussion.
I have spent a fair share of time berating myself for my "what iffing"; feels a little self-indulgent actually. Or is it? Is it more to the normal with PSP (or any life altering illness)?
I know "normal" is just a setting on a dryer:)...but I'd appreciate some feedback. Anyone else experiencing this? If so, how do you cope with it?
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JudyJ
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hi i am obsessed with illnesss according ot m y partner
but since dxs 9DEDC 2010_) Ai have go teverythi go ng in plac e- mvoed to a ground flloor apartment; got an LPA AND EQUIV OF A LVIGIN WILL SO THA TFOLKS KNOW MY WIHSES gpt tjhe caring sorted with an agency comingin mos tdays ( same person who is great)
I THOUGHT I MIGHT not be here as i sitll am upright msot of the item and sitllll laiagin and crhyign too much
i hav e jsut ha dbreas tcamcer and althaoa i hav e hge all acle ar i star tradioterpay tomorrwo for 3 weekss (and hav esor tof cope diwthi that)
iT is really difficult havaing your fhcildren watch you go downhill and i am for the 1st t ime blessed htat i dpo not haVE CHILDREN
ut life htrows soem s trang ehtings at us and we deal with them
Thanks for your thoughts; they help. So sorry to hear about all you are going thru; wow; it's too much. But it sounds like you have a sense of humor, too; hang onto that for all it's worth.
I think I understand what you mean by realizing now you don't have children. I have no regrets & wouldn't trade places with anyone, but my kids, who have so much life ahead of them, I wish they didn't have to see this; but it's unavoidable; reality bites some times.
My Mum had a favourite saying when we were kids and fretting about stuff - "we'll cross that bridge when we come to it". That doesn't mean you shouldn't plan for the future but there's no point spending too much time worrying about it. As Matthew says 'do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.'
I don't mean to offer platitudes or glib answers - there aren't any when it comes to PSP.
I didn't take if as platitudes or glib answers at all...sincerely. My chapter on PSP is being written each & every day, so I appreciate sage advice, as you quoted above. A little goes a long way with me; thanks.
hi judy im afraid am a what iffer and i worry about things that have not even happened my wife is always saying to me dont worry about things you cannot control its a waste of energy i know this but it still does'nt stop me from worrying \\ i guess its in my make up and it does not matter how many what ifs you say it does not alter the outcome \\ well not a great deal in my case so you are not alone mate i do try and stay positive as i can peter jones queensland australia
maybe its an Australian thing Peter lol I worry about things that have not happened too! My husband tells me I'm a worry wort! We visited our respiratory specialist today & both of us got good report - husband has asthma as I do but we both have added complications.But ok today not to be seen for 12 months! Cheers marytea13
Speaking of "what if's?"...aside from the day my daughter left for college, I've been finding myself marking time since my PSP diagnosis such as on Christmas Eve. My daughters and I moved into a one level home during October to make it easier for me to get around, so it was our 1st Christmas in our new home.
I always prepare a dinner for a small group of friends/relatives; my lack of stamina made it harder but I did it anyway. Found myself quiety tearing up & leaving the room a few times to regain my composure.
I found it impossible to push back the "what if's?". What if I can't do this next year? What if I'm not this cognizant next Christmas? What if this is my 1st & last Xmas in this house because I'll need to go into assisted living? So on and so forth. I really, really need to focus on living in the present or I'll drive myself nuts. I'm loading up on books to read to help me with this issue; it's a whopper.
You mention cognizant in your posting. My wife with PSP has a mind that is working very, very well. Problem is that the PSP patient has trouble putting two thoughts together quickly. The mind is fine, just much slower. That is why PSP patients don't jump into conversations well. Because where non-PSP people can change thoughts quickly, jump into and out of conversation easily the PSP patient can't. Between the not talking much and the non-blinking eyes (sort of a stare) most people think the PSP person can't understand things or comprehend the conversation. They can but just have trouble bouncing down the conversation road.
My Neuro has given me different info than perhaps your's has, so when I post something, it's with his info/my research/my feelings I'm referring to you. I'm glad to hear the mind is fine, just slower; this isn't the info I've received from my Doc in terms of going forward. So it's refreshing, and hopeful, to hear another prespective.
Judy, the good news is that the mind is fine for the most part even at the end unlike alzheimer's. The bad news is that PSP can make you a captive in your own body near the end from what I understand. Some are totally incapacitated but yet the mind knows what is going on, or so I understand. Are you in the USA and if so, what state?
The reason I asked is the experience we are going through. We have a local neurologist who checks Sharyn out but doesn't have much to say and is in and out quickly. Friends with Parkinson's said that they were going to the University Of Florida neurological clinic for evaluation. We decided to also do it. It was a great experience. The top neurologist set up an appointment with his top assistant. The assistant, also a neurologist, was fantastic. Much better, spent more time, more informative and interactive than our local neurologist. He also got us involved in a study that is taking place at the University for PSP and PD. We only go every four months. While there we see him, the physical therapy dept, occupational therapy dept, and the speech department also. The speech department runs a swallow test each time which is valuable in evaluating my wife's swallowing. I'm wondering how far you are from the University of Minnesota and if the neurological clinic/dept there would be worth visiting. It was the BEST thing we ever did relative to PSP. On the first visit they did an evaluation of the balance of my wife. Very extensive. They placed sensor transmitters all over her body, had her walk, and there were eight cameras that watched her movement and gave back an extensive evaluation of her balance. We were reimbersed all costs of the study including overnight at a VERY nice hotel and in addition $75 in cash. If I were you I'd check on this type facility in Minnesota. Hope this helps.
hi there, im in florida too. which dr. did you see? we see dr. isaacson. we were in a study but its now over and we found out that alan received the placebo even though he did very well on this nasal mist from canada. the study is over and there is a definite decline in my husband. he has psp for 5 yrs. maybe we can meet up onetime.please write me back thanks bubbie.
Bubbie, My email is jim.pierce@gmail.com if you email me we can discuss meeting. We met while in Tennessee with a couple where the husband has PSP. Would love to meet you both and discuss PSP things. Email me please. I think our personal discussion will be better served off this site.
Bubbie, Could be that the placebo had a mental effect on Alan when in fact there was no benefit. That happens often and is why sometimes sugar pills (no meds in them) are given to people. We are about 3 years into our PSP experience. My dear wife Sharyn has PSP. Started in about 2010, maybe before. Our local neurologist is Dr. Hunnycutt but we also see Dr. McFarland (we like him better) every four months (just an evaluation). He is in the neurological and movment disorder clinic at the University of Florida in Gainesville. Sharyn is also part of a study at U of F and she goes for that once a year.
dear judy, my husband has psp now for 5 yrs. what a terrible illness. im lucky we have insurance so i have help. my husband is 66 yrs old. it is so sad to watch him decline. i have 3 sons so its hard for them too. we moved to florida a year ago but i miss thekids alot. for alan it is the best place. when all the snow birds go home im really all alone. where do you live? please answer me. so far nobody has replied to me my name is bubbie. hope to hear from you .be well and take each day as a gift . thanks bubbie
Hi Bubbie. I'm sorry to hear you haven't received direct recognition on this site; validation is very important; that had to hurt. I know this can be a lonely experience.
I live in St. Paul, MN. Brrrrr. The older I get, the less sense it makes to live here; if I had pockets of $, I'd be in a much more temperant climate, for sure.
I'm a native of St. Paul. I worked in the corporate world for 15 years, including 6 years living out of state because of work. Spent 4 years in the Des Moines area; I loved it there and the people. Then I was promoted to our Atlanta office & spent 2 years there. It was a beautiful area but I was so uncomfortable with what I experienced in terms of racism on a daily basis, in the office, I took a voluntary demotion to come back to the Twin Cities. Shortly after that, I had 2 girls, less than a year apart; whew! Kept me busy.
Left the corporate industry because day care wasn't working & just didn't feel right. So I went into the restaurant industry at night, so there was always a parent home. Grew to love it & really miss it. Had to leave it about 13 years in; my body kept telling me 'no more'.
Please feel free to chat at anytime about anything. I'm home almost always. And, yes, I will take each day as a gift; thanks for that
hi judy, it was great to hear from you. too bad you dont live closer but we can certainly email this way. we have apsp group here in fl. that meets once a month so that is so helpful. im going out now for lunch with this friend. her husband had pspfor 5 yrs. and is gone now about a year. she still comes to our group and is great to talk too. hope your day is good and please keep in touch. i need all the help i can get. being a caregiver is so stressful. talk to you later. bubbie...
We live in the UK, my husband was diagnosed with PSP nearly 2 years ago, but we think he has had it for at least five years. During the last year he has become totally dependent on me for virtually everything.
Today has been a big day for us, he started attending (one day a week for 12 weeks) a day hospice. The staff so far have been very supportive and it's such a relief to have people who have experience at looking after people with PSP.
My husband doesn't appear to worry too much about the future, but I certainly do, knowing things are going to become far more difficult.
My wife has PSP but doesn't mention thinking about "What if". We are taking life as it comes. Planning on attending a wedding in the summer, just back from three days at the beach, planning trips to the beach on Memorial Day, Labor Day, and making plans to visit relatives in the North. Although her mobility isn't good at all and swallowing is a problem and speech also we are moving ahead not thinking "what if". Keep on the move and busy would be my advise. You could have years, and years to go yet. Patients have lived over 11 years with PSP so in your case it is no doubt way, way, way, to early to be worrying about "what ifs". There are no guarantees in life and you could be killed by many other things before PSP takes it's ultimate toll. What if you died tonight? What difference would it make to you? What difference would it make to your family? Someone told me a long time ago "Worry is the interest you pay on trouble before it arrives" Who knows when it will arrive? I doubt you or the doctors can say for sure. Sorry if this sounds harsh but I hope you have a sense of our view on this PSP process and life.
Oh, I absolutely do. I feel almost ashamed for admitting I have the "what if's", knowing I'm in the early stages but there are so many others in advanced stages and how hard it is for caretakers, etc. I'm very aware something else could take my life in advance of PSP. But this is the forum, as I understand it, to get some of these thoughts/feelings out and feedback from others in similiar circumstances. I do appreciate your input, don't consider it harsh, and take it in the spirit you intend it. Your points are well taken. One of the primary things I'm seeking in feedback is helping keep things in perspective & I know I have a lot to learn as well as much to appreciate.
Judy, I understand, but haven't checked it out, that Hospice can assist those on the PSP road in advance of nearing the end. I'm going to investigate that and see what, if any, help, advice, or information is available to us at this early stage of PSP. We think only of Hospice of the "end of life" but they are much more than that.
Know also I'm new at this; it's the first time I've really had to confront my mortality. I am single so I don't have a loving partner to confide in. My young adult daughters still look to me to be the strength for all of us & rightfully so. My family is not close so I don't have a strong support system tho I do have a few friends I can talk frankly with. So it makes it kinda of hard. This chapter of my life is just being written and I know I'll grow from it. As I had mentioned early, I recognize the importance of living in the moment and not 'what iffing'; have tools to help me with that and right now it's my primary goal...to live in the present and appreciate each minute of it. I guess I'm still a little scared/overwhelmed; but I will get past it.
Judy, I'm sorry that you don't have a significant other/spouse to help you and give you confidence and peace on the PSP road. My heart goes out to you in that regard. Just know that we are here for you to help you in any way we can. The chore of planning takes on a whole new meaning when you don't have a spouse. Thanks for opening my eyes to that.
hi there. i havent heard from you in awhile. hope all is well with you. my husband is not doing so good .i see a decline everyday.it is so sad to watch him. im so lucky to have a great aid and good insurance. we took out long termcare 10 yrs. ago not planning to use it. boy was i smart. the stage he is in now i could not take care of him. it is so hard. please write back and take care.of yourself. bubbie
Jimbo, my dad has psp and my mom, SusieQ, who blogs on here, is his primary caretaker. Dad has been going to a hospice for the last 12 months, to their day centre facility. He only goes once a week, but he really enjoys it and gets excellent care from people who understand psp. This also frees up a few hours so my Mom can have a bit of much needed free time. My Dad has also stayed there for a week at a time for respite care. My parents live in the UK and I now live in Canada, but whilst we were visiting last year, we went to see dad at the centre, and I cannot speak highly enough about how caring and lovely all the staff and volunteers were. I would definitely suggest you make enquiries in your area. All the best, Karen
Hi Judy. Like you said: A certain am't of " what if-ing " can lead to positive action but when it takes over our lives, it actually paralyzes us. You only recently found out about your dx. Cut yourself some slack ! Getting handed a dx like PSP certainly is overwhelming for a while, don't you think? Whenever you feel your mind running away with itself, say STOP! You are here today. BE here today ! You're not only taking care of yourself, but have two dtrs. ! Your own family isn't the " Father knows best " TV family. Not easy by a long shot!
You know, the older I get, the more I think that that there are actually very few of those storybook families !
What Jim said about the progression of PSP is right along the lines of what I've learned also. Every person's progression varies and is determined by many different factors. Being a realist is one thing , but building a coffin for yourself is way too premature! You're very much in charge of your life and that puts you way ahead of the game! No doctor can predict what, how, and most certainly not- when ! Unfortunately even the best of doctors may not be the most positive personalities ! As my sister's neurologist said: be hopeful and live your life the best way that you know how. Don't medicate unless you need to, as most medications will not work and may make your symptoms worse. On the other hand there are meds or helpful interventions for symptoms that arise. That's also very individualized.
Geographically, we're too far away from some of the help that's available in a few pockets of the U.S.,as are probably most PSP people, but beat those bushes and find whatever may be out there! I hope that you'll be surprised ! Even though PSP isn't Parkinson's, contact any entity that you think might be able to assist you in any way. Another possible source: Even if you aren't religious in the traditional sense ( or any sense at all ),you may find assistance by contacting the fellowship of your choice, esp. if you can't turn up anything else in your search. I think that most people would love to help you in any way that they can. Helping makes people feel good. I think that the more independent someone is, the harder it is for them to ask for help. By the way, you probably haven't thought of this, but you've been helping out everyone here ! I'm grateful.
Wishing you peace in between the frenetic activity ! You know that you're doing the best that you can! By the way, your ability to think does stay with you for the most part, despite the deficits that occur. That's a fact ! Take care of yourself ! Elise
I met someone who is suffering from Parkinsons for the last 10 years She is doing regularly yoga . She g9oes to office and she is doing all household works.
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I've known for decades it's not a healthy thing to do, but emotionally...it's just not that easy.
Why is my Mum so tired when going out to the shops in her wheelchair being pushed by us, it can take 2 days to get over a 2 hour outing?
Not sure I can cope anymore
My sister and PSP
Role Reversal....
