Just returned from a car trip with my wife who has PSP. We went to Virginia to visit her son and three grandchildren then the wedding of a niece also in Virginia. When we returned I vowed to never do it again. My wife was so fatigued at the end of the trip (we took two days both ways from FL to VA) it will take her days to recover. A realative in the medical field says that any experiences that change routine can affect people with diseases like PSP. I've now decided that if her siblings and family want to see her they can visit us (we have the room for them to visit). Just getting my wife into the car was major. Getting out was a bit better. I'm 79 his October and in good health but this trip wore me out!!!! Response to requests that will help me better care for her either don't get answered due to freezing or due to the slowness of the cognition of her brain. Sorry to sound frustrated but what was suppose to be a great trip ended up being too much for us both. I'm usually positive but today, driving back, was the most negative I've been in my life.
Jimbo
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jimandsharynp
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Hi Jimbo
I can really appreciate what you mean, and what you've just gone through. I think my wife is at a similar position with respect to PSP. I'm much younger than you and it's a great effort taking her anywhere local. I never try long distances. All our retirement plans of travel have disappeared!
I was talking recently on this forum about frustrations with certain situations with my wife, despite knowing a lot of it has to do with this awful PSP.
While I know I have to take care of myself in order to take care of my wife, it's a constant battle because, despite the help we receive, it's still mainly a 24/7 task for me. I'm sure you feel the same.
I don't regret looking after my wife, and she tries her best to think of me, so we plod on together. The hardest part is seeing her life being chipped away by PSP and knowing what an active, independent, sociable and caring person she used to be.
I think I'm writing this without answers for you, just complete empathy.
Strelly,thanks for the response. Your support and that of others is important to my mental health. lol We are in similar situations, you and I. It is tough for sure. I have gone this route before. My first wife of 31 years passed away from CJD which is similar to PSP but of course it moves MUCH, MUCH, quicker (months). Having said that this time around isn't any easier. Perhaps because I was younger the first time (25 years ago). Hard to believe I've been remarried almost 24 years to this dear second wife who has PSP. Thanks again for your support and that of all the fantastic people on this site.
hi strelley hows it going === ok i hope i tried to send a messsage on questions today but i did not have any luck\\ do you think its possible to retrain our brain or re- route the pathways to the injured parts of our bodies \\ it seems a lot harder to put it on paper than when i was just thinking about it but i hope you understand what i am on about\\\\ or once the ends of the have been distinguished is that it \\ like a fuse that burns right to the end then goes out \\ i only ask this because i go to balance group every week and the physio teacher keep saying to me had any falls this week and when i say yes she says to me what were you doing so i explain it to her and then she goes on to say why didnt you plan what you were going to do first so i thought well that comes back to my question can yoiu retrain the brain mind you this is coming from someone who could not even get a message sent this morning thanks mate just hope you can make head nor tail of what i have written peter jones queensland australia psp sufferer
hi jim & strelley c'on now gentlemen lets have you back on your feet again you are both doing abloody good job of being a carer we know tis a battle for you we may have psp but we are not silly or blind that we do not no what you do for us and how hard it is to try and carry on with little conversation on our part but without you we would be lost in the system === alone=== and you would not want that mates would you you know if the shoe was on the other foot we would be
looking after you just the same and probablly feeling the same as you do now very weary a bit fed up at times and feel like you would like to have things back to normal \\ the good old days well we
with psp would like that very much to mates but until that time as someone finds a cure for us i afraid we shall all have to battle on now come on gents lets put the tiredness behind you we with psp do our best or the best we can so cheer up me boys and there\s another day tomorrow
life is very precious each and every one of us so get a good nights sleep=== if you can peter jones queensland australia psp sufferer and also psp sufferer that is going to beat this psp along with all of you whom i have never met but we can do it
thats better i'm glad that you cheer up when you hear from me ======thats what i'm here for just try and get a little bit of happiness out of you all i know its very hard but you know what Malcom Faser said LIFE WASNT MEANT TO BE EASY
BUT IM SURE HE NEVER LOOKED AFTER ANYONE WITH PSP \\ WELL I DONT THINK SO ANYWAY \\\\ TAKE CARE MR STRELLEY AND JIMBO THERE ARE BETTER DAYS AHEAD PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
/Jim so sorry u had such a bad experience Jim I did too & I'm, the PSP sufferer. We did a house exchange last May I found it very stressful even such things as finding the light switches in the exchange house! Also the air flight even though the airbus was excellent & Virgin were marvellous to us. We flew business & I'd recommend that - use points to afford it. But my husband says he will not do another house swop as it was too hard for him so much preparation & cleaning up. We're glad we did it & achieved our aim with catching up with family & friends but like u said they will have to come visit us here although its a long way from NSW to W A. I try to keep active play Bridge Mondays - except coming last but keep trying. My husband is SEC of our Probus club so go to meetings + some outings. Computer too keeps me busy at times! Cheers marytea13 in Perth W A
Think of the postives you and your family will gain... As I think back to my mid twenties and before.,,
My fondest memories are about visiting and sleeping in the same house as my aunties, grandparents and great grand parents. I loved being able to stay with them,bring along and make food to share, investigate and exchange stories, We would talk about life - they would tell me about theirs and in return I had the chance to speak about mine. I also thought it was great to be able to work in the kitchen, and go out in the garden to work. (It is weird how one can enjoy doing a task at someone else's home but think it as pretty mundane in my own home). My sisters, cousins & I used to all compete with the honour of visiting and staying, It was a real treat for all of us and it made great conversation when I returned to school & work.
(My grandparents had some pretty severe back injuries & other things amiss that prevented travel... )
Alana, Thanks for the encouragement. I'm feeling a bit better today. Wife fell on our trip and damaged VERY baddly the lens in her glasses. Replacement cost $300. However because she was only two weeks outside her insurance on them LensCrafters replaced the lens for $25. Finally a bright spot in a not so bright week.
jim dont forget mate there is always light at the end of the tunnel it might be a bit dim for you at the moment with your trip etc but it will get brighter my friend peter jones queenslasnd australia psp sufferer
Sorry to hear about your epic trip. It's hard to be positive when circumstances dictate otherwise. Sound like it took too much out of both of you. Having relative visit you and Sharyn going forward sounds entirely reasonable and a must.
It's another turning point. The relief of knowing you don't or probably won't is a good thing.
Jim, Tony, Peter "grandad" Jones sending you all a huge hug. You are all doing a wonderful job and have all helped and supported me through the rough patches. Not writing to impart advise just wanted to send you all a HUGE hug and just to say thank you for being you.
JoJo, Thanks. I guess we all have to stick together and help each other over the "rough" spots. Most days I'm ok but the trip was taxing on both of us. Glad to be home.
Since writing about my travel my neuro was so disappointed in my walking + balance that he referred me to another neurologist for second opinion. We had that appointment last Thursday & the second opinion = he doesn't know what is wrong with me - something is but what he cant say at this point & all this time its been PSP. I am so confused. Sinemet is to be reduced & I see him again late August. Has anyone had this experience with ?PSP
Just seen your latest blog (new site sometimes delays in informing me by email).
Sorry about your confusion. Let's work through a few things. You have previously been diagnosed with PSP by one neurologist but now another one is not sure. It's possible this neurologist is not too familiar with PSP (as a movement disorder) and wants to be sure before making any further commitment. If they gave you Sinemet to see improvement in your balance, posture and gait, and now find you still have increasing problems with these symptoms, then the neurologist should know this is a typical response to someone who has PSP rather than Parkinson's.
I'm going to assume the original diagnosis was right, so they should be looking for 1. Early falls and balance problems, that do not respond to Sinemet, or only respond for a short length of time (and lessen with time) 2. There should be the cardinal sign (by now) of vertical gaze palsy (unable to voluntarily look down and possibly up). Plus other eye problems called abnormal saccades. 3. There should be some evidence of swallowing difficulties, usually with liquids (dysphagia) and some speaking difficulties (dysarthria). Alongside these, there may now be problems recalling words and finishing sentences. There could be many other symptoms, but the neurologists should be looking out for these mentioned.
While not a definitive test, I would suggest (if not performed already) an MRI scan to see if there is any midbrain atrophy (which is mostly present when symptoms of balance problems appear). They look for the "hummingbird" sign.
There are no real "biomarkers" for PSP (that is, no lab tests etc that can detect PSP), so the neurologist has to diagnose from clinical signs.
Not sure if any of this helps. Don't be too worried about what the neurologist may be saying now, I'm sure it will be sorted out on your next visit in August (by then they may have a clearer picture of what is happening. You can talk them through what I have written, and ask why they have lowered your Sinemet dose - are they suspicious of side effects).
Thanks Strelley I have anticipated some of your comments here & already answered them such as eye movements. The second Neurologist wants to view the MRI done in 2011 on which the diagnosis was made. I have this film so am going to take it to him for him to view before end of August. The main side effect from Sinemet was vomiting so I have Motilium to prevent the vomiting. Cheers marytea13
I did see the other blog just now - this new site does not take me directly to the blogs sent by email, so I have to search for them -
I think you were worried about NOT having eye problems (vertical gaze palsy). Some neurologists mention that eye problems occur 2-3 years after falls begin. Other neurologists expect to see eye problems much earlier. In fact, most have eye problems about the same time as falls (or balance) problems begin. Less have eye problems 3 years or so later. There are extremely rare cases where on autopsy PSP is confirmed but the person never had eye problems. This is very unusual especially since the name Progressive Supranuclear Palsy is mainly about vertical gaze palsy.
We have been describing PSP (RS) type but there is a PSP-Parkinson's sub-type that shows reasonable response to Sinemet (although eventually it fades). It is a "slower" form with longer survival and less severe symptoms. It does not show the same midbrain atrophy level as PSP (RS).
Mary, Yes. My dear wife was first diagnosed with Parkinson's. We went for a second opinion and he said "Can't say PD or PSP but if you held a gun to my head and made me decide I'd say PSP". After a third opinon at the University of Florida neuro dept they confirmed PSP. Since many symptoms are the same in PD, PSP, MSA, CBD, etc. the doctors can't tell without a biopsy of the brain (not usually done while alive). Your case is not unusual in that it takes time to get to a "final" diagnosis. However, a book written by a woman who thought her husband had CBD found out after his death in the biopsy it was actually PSP. This area of brain diseases is difficult on us all due to the uncertain diagnosis. Hang in there, we are with you all the way.
Thanks Jimbo for your encouraging words. I am starting to come to terms with this vague out come maybe at the next appointment this second neurologist will be more certain of what my diagnosis could be. He has asked to see the film from my MRI & as we don't live far from the medical centre/hospital we will deliver these films next week. Meanwhile I've had a terrible 'cold' not flue no temperature etc. but nasal discharge + cough up. I also suffer from asthma so no good all round. My respiratory specialist had given me antibiotics to have just in case so I am taking them & am improving. But I feel I cant go to play bridge tomorrow (Monday) will go next time. Also I have to decide about me driving. Last time my licence was due I was sent for special test verbal + Practical but the new neurologist says just go have the regular practical test by police so I will do that. Thanks again marytea13
Just be aware that the MRI cannot POSITIVITLY tell if it's PSP. What it can do is rule out other things that could be in play (strokes, brain tumors, concussion, etc.). I was told that the MRI is more of a diagnostic tool to rule out other possible causes for your symptoms. If it were as simple as a MRI not so many cases would be misdiagnosed.
There comes a time, when getting in the car to go any place is a big ordeal. I even stopped Doctor visits. I could not put my husband through that for nothing. There is no help out there, no hope, just aggravation. So we stayed at home and who ever wanted to visit was more than welcome, and Ed enjoyed his friends and family so much. I lost Ed in April, and not a second goes by that I don't miss him, and think about how brave he was through this horrible illness.
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