But I wasn't surprised, either. My existing symptoms seem to be escalating i.e. loss of balance and falls, and a few new ones that have snuck in there that concerned me.
Such as the amount of times I've aspirated over the last several weeks. 1/2 a dozen maybe? Maybe it sounds like little to those who are in later stages, or caring for those in later stages, but it's new to me.
And always with clear liquids. Depending how much I've swallowed, I have this immediate funny feeling, and it all comes up & splashes out. All over the place. As to solid food, just starting to feeling more difficult to swallow it done; hurts, sorta. Am careful to take soft bites. In hindsight, am realizing my 'diet' is consisting of more liquids than solids which isn't good or healthy.
He sceduled me for a barium swallow test next week. He said aspirating goes a long way to explaining the bad case of thrush I developed 2-21. It's still not gone. Said when aspiration happens, and particularly if it happens on a somewhat regular basis, it changes the natural PH (?) levels in your mouth, back of the mouth, and beyond the back where you can't see. It's left me with a nagging cough I've not experienced before & a raspy voice. Said I'm might have to see an ear, nose, throat specialist to get on a prescribed mouthwash to keep thrush at bay.
I'm also beginning to have mild hallucinations. For example, I was cleaning the floor area around my daughter's room. Her headboard has rounded decorative balls on each end of the headboard. Clear as day I say a face, in black & white, animated, looking back at me. It wasn't a pleasant face. Yet, none of that scared me. I said aloud "well, that's different.". As well as seeing things out of the corners of my eyes I know don't exist. Again, for some reason, these events don't scare me. I just tell myself they're not real. He said this a sign of progression with PSP. There is a medication to treat it but it's sedative, and up to me. I told him I'd rather wait to bring more meds on board since I'm aware of the hallucinations and they don't scare me.
Also...geez...my episodes of dashes from reality. Blogged about a few in fact. One being when I woke up believing it was morning when it was evening, & called my daughter to bug here early in the morning, in spite of clues around me. My set of facts I was working with, were so true and real, clues didn't add a dent to my thinking. That episode went on about 30 minutes. There was one around Xmas that went on for 3 days over one issue. Scary as hell when reality breaks thru and I realize how wrong I was despite how right I thought I was.
On Monday of this week, for example, I stopped to get gas. I've had my van for 16 years and take care of her almost like a child; in other words, I know that vehicle like the back of my hand. The station was just filling up, and I kept manuevering around the lines to make sure I was on the right side to put the gas in. So after 10 minutes of careful plotting & planning to get a spot, I finally found one. And, to my surpise, really, to my surprise, I pulled up to the pump on the wrong side. Too many, it might just sound like an oops. But considering my other episodes of operating within a an absolute certainty of facts, having driven this vehicle 16 years and being so certain I knew what side was the right side; I'd never done that before.
My Nuero's opinion of all that is first, memory, short or long term, is a very complicated and tricky thing. He said it sounded like additional frontal lobe deterioration (executive functioning comes from the frontal lobe). I've been taking 100 mg. of Namenda to help with short-term memory problems but now added dozepil (sp?). Has more side affects but said it was time to hit the memory issues with 2 guns instead of just one.
He upped the dosage on my Fentanyl Patch and w/o me having to state my case for it, thankfully. He could see just by my walking, sitting, getting up/down, how this keeps getting worse. So an upside is I've been enjoying since Thursday, the simple pleasure of just getting up to do the simpliest things w/o pain, or the usual mental gymnastics I'd put myself thru to get-up to do much of anything, sit for too long, and once again, unable to sleep thru a night because pain I would actually be feeling would incorporate itself in a dream and wake me up.
He said it's a bad kind of pain that will wake a person up and must be dealth with.
Overall, got the impression he's more concerned. But, God Bless him, he wrote me a referral to get into PT, OT, and Speech Therapy as soon as possible. Hopefully with lots of hard work, patience, a good attitude, better nutrition, and using the 'tools in my toolbox', I might pull ahead of this thing. Wouldn't that be wonderful? I won't settle for less.
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JudyJ
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Glad he's referred you for OT/PT and speech I think your neurologist sounds like a good'un!!
Mum has hallucinations, too. Has done almost from the beginning but she doesn't seem to recognise them as hallucinations - it's all VERY real to her. Usually they seem fairly innocuous and non-scary. She often sees animals or people (usually children or babies) or family members who have died years ago, but even that doesn't strike her as weird! Her neurologist put her on a drug called Rivastigmine which seemed to help initially but we are now at the max dose and she still hallucinates regularly.
I hate to say this but you may soon have to consider giving up driving Can you honestly say, hand on heart, that you would trust your reaction times and be able to stop suddenly, if you needed to? Maybe your neurologist could advise you.
It sounds like the only difference between her's and mine is I know when it happening, it's not real. Hmmm. He did mention mine may cross over into the scarier ones, and would need a med for that, but it' sedating.
Oh, brother, DRIVING!:) You are 100 percent right and it weighs heavily on my mind. I've noticed my reaction times aren't what they used to be and in general, my driving skills aren't that great.
Shortly after I was diagnosed, I asked my Doc this very question. He said here in the States it's up to each State to make their own rule. In Minnesota, it's a "self-reporting" State, meaning it's up to the individual to forfeit it.
I'm getting closer but not quite there yet. And, yes I would feel like crap if I caused an accident and hurt my daughter, someone else, or worse. But giving it up opens up a whole new burden. There is public transportation and a retail area about 8 blocks from here, but in my present state, that's too far for me.
My immediate family is quite fractured so asking for a ride somewhere would only work in a blue moon. Yes, they do know my circumstances. And others who are close to me all have jobs & additional responsibilities. My best friend, Connie, who I've referred to often, lives out of state.
I worry about how isolating it might be for my daughter with special needs. I know logic prevails in that it'd be better than getting in a accident with her as a passenger. Spring is almost here, tho we still have quite a bit of snow. In a few more weeks, she'll be out and about. She loves to walk.
As for me, my biggest worry is isolation. I've been thru it and it resulted in severe depression. The transmission in my van went out on Thanksgiving Day (ironically!) of 2005; didn't have the $ to replace it for 2 years. The girls were younger and got rides from friends parents and their father, tho I know it affected them.
After I got it fixed, tho, I wen thru a round of more surgeries, mostly orthopaedic but 11 months of eye problems that escalated into a hot mess and was unable to drive for 4 months. Actually, my Neuro said eye problems are one of the 1st symptoms of PSP and it's usually diagnosed a few years after that. He said the eyelid muscles are the most delicate and I basically stopped blinking, or just sporadically. Turns out I dried my eyes out down to creating pits into my corneas. I also developed cataracts. After a few months of hydrating my eyes, I had back-to-back cataract surgeries 6-11.
Again, my point is, w/o my own transportation or easy access to rides, I become overwhelmed by loneliness which leads to depression; it's better now; I'm just hesitant to take that step.
So my plan is to throw myself into the PT/OT/speech therapy, and work hard at it, including improving my nutrition greatly. The rehab campus he's sending me to is only 6 miles down the road. My wish is I stabalize. My hope is it's for a length of time, and that feeling better via these therapies and the tools in my toolkit, will keep me upright and functional for some time to come.
Jimbo, I think, posted on one of my blogs about not driving, and I flat-out avoided a response. Jimbo, if you read this, sorry about that...but Kathy busted me for the 2nd time; no more avoidance. I do hope as a 'last chance' kind of thing, that now we have a much more solid plan in place with therapies & an additional memory med, I will keep motoring into the future
My goodness, you have a lot on your plate!! I think you are doing amazingly well to keep going in the way that you do. I'm sure if I had all that to deal with I would just want to pull the duvet over my head and wait for it all to go away!!
I absolutely understand why you want to keep driving as long as possible. We were very lucky that, for a long time, Mum had Dad to drive her places. Sadly, now, we can't get Mum into a car and this limits their "outings" to places Dad can push her in the wheelchair. This means that, in reality, they don't get out very often, especially when the weather is bad. Their "world" is now very small
We do have a special discount card for a taxi scheme that has cabs that will take Mum in her wheelchair but we only have a limited number of journeys per year so we tend to keep that for hospital appointments and the like.
hi kathy did you manage to find the cup that mum wanted i hope so peter jones queensland australia psp sufferer
JudyJ
I hold my hat up to you, such a trouper, as was my mum. Because your symptoms have happened in a different order you are able to give us some insight into some of the things my dear mum did. Like one day my sister called on her (This was before carers became involved) and although it was 11 am it transpired mum was just getting her tea and had already eaten breakfast and dinner and was convinced it was 4 o'clock. Although that in itself made us realise she could completely lose track of days and times and made us watch out even more, we couldn't understand at the time (not having had the PSP diagnosis at that point) how she couldn't read the information around her. Likewise she had a calendar next to her chair in a vain attempt to stop her from ringing up the hairdresser at Sunday lunchtime to find out why she hadn't come to her Monday morning appointment. Or going to the Tuesday morning coffee morning at her sheltered housing three or 4 times on a Monday despite continually being told by her friends it was the wrong day!
I found an amazing day clock by the way on the Alzheimer.co.uk site which did help for a while until she was not able to read anymore. The only hallucinatons mum had were before diagnosis , when she kept thinking I was in bed with her.I put it down to the fact that I was spending so much time caring for her that she was losing track of whether I was there or not.
Thank you so much for your blogs, although it is all hindsight in our case it does explain an awful lot. Do you keep some sort of diary as it would be really helpful to future pwPSP.
Thanks for your reply, Dianne. I know at least sum of what I'm posting is unpleasant, so it helps to know as a counter-balance some of what I post as a person with PSP in the earlier stages help caretakers understand their loved ones better, warms my heart.
Wow you are doing so well. I do hope you get some benefit from the various therapies you are going to have soon. My husband has been having physiotherapy for just over two years along with speech therapy and occupational therapy each one has helped, although we go for periods when he just won't do his exercises. In April he is going to start a gym programme to give him more exercise, hopefully it will help him retain some strength in his arms and legs.
Loss of driving skills was one of the first symptoms he had. He had several minor bumps and then one day if it hadn't been for a very alert lorry driver he and I would not be here today. He literally drove straight into the path of a lorry and seemed completely unaware of what he had done. Soon after this he voluntarily gave up his licence. Here in the UK once there is a diagnosis of psp the suffer has to give up their licence.
One of the other early skills he lost was that of being able to use a computer even to send emails. People like you, Jill and Peter Jones are so good at sharing your experiences with the rest of us and I thank you from the bottom of my heart as it has helped me understand more clearly what is happening to my husband. He hasn't been able to express himself for a long time now.
Regarding the driving issue, what a scary situation that has must have been for all. I'm glad to hear his various therapies are helping which I'm just about to start. This gives me encouragement and I thank you for that. Most of all, if something I've posted touches you in a positive way, It helps me greatly, too. It's at least making good use of a negative situation.
I'm sorry he can no longer express himself to you; I can only imagine how hard that has to be.
Don't lose yourself in the mix of PSP and make time to do kind and nurturing things for yourself.
hi judy well i said i would keep an eye on you \so here goes mate first of all don't let it worry you
just take it as it comes i know thats easy said \\ but its no good worrying about things we cannot control i take one tablet for psp 10 mg of ciprimil which is not a great deal \\ i do not like to load my body up with tablets i do not understand and do not want \\ from what i can see of things they give you tablet A which will do something for you\\ but then it will go against tablet B and =so on and so forth\\ and the side effects are absolutely horrifying after you have read the sheet that they give you from the pharmacy \\ i would just like to see you relax a bit more if i was anymore relaxed i would fall of the perch right now \\ heaven forbid\\ i hope you have noticed i have put breathing spaces in for you \\ not full stops or commas because everybody does that\\but a good old fashioned crooked line \\ well it took me that long to read your blog mate i had to keep going backwards and forwards to find out what has happened since we last em\\ or post or something\ because im a slow reader ]]\\ especially with this tiny print on here i suppose i could change to capitol letters BUT i would rather strain my eye's \\now ive answered nothing for you \\ but i hope i have cheered you up a little \\try not to let it get you down mate\\ i know deep down inside us we all have the same feelings about psp but i will not beat us\\ will it mate\\ take care keep smiling chin up and best foot forward as they say \\ if i knew which one was the best \\peter jones queensland ausralia psp sufferer
I believe what happend last week was that the 2 days of visiting my lawyer with my friend, Connie, to finalize a few things and start a few more, then meet the next day with my Neuro, have him confirm my symptoms are worsening, simply got the better of me. Both visits were necessary and now I'm glad they're in the works.
But, having my POA, she was also here to help me with unnecessary drama (boy, do I hate drama) arising from 2 people on the project of restoring my other home and get it on the market. The 2 don't play well with others, much less act like adults. So I gave her my full blessing to go over there with my realtor and kick butt (so-to-speak). Connie has a way of handling herself so calmly and never losing her temper, she's my secret weapon. She gets things done with as few tear drops/hurt feelings than anyone I've known.
You are 150 right. I MUST start getting some self-discipline back and get back to living in the present. I have many books on the subject. They've helped me much in the past. Living in the present, for me, is like a spiritual experience, a way of life. I do need to let much just roll off me. Thanks as always for the prompt.
You know what? In all of my 54 years, I've never heard someone say they'd 'keep an eye' on me. Ever. And it feels good. I've always, since a small child, been the 'watcher overer' or caretaker.It's strange, but so nice, to hear that
I settled myself a bit over the weekend. Now I'm looking forward to working hard in PT, OT, and a Speech Therapist. Can get it all done in one building, thankfully. AND, I'm going to turn my nutrition inside out, from bad to good. AND, try as hard as I can to stay present. AND, with spring just around the corner, looking forward to getting back outside, getting my hands in some dirt in the gardens, AND walking the dog. Goals too lofty? Nah. Not now. Feel like this is perhaps my only shot at really turning a corner so I'm going the right way...
BTW, Peter...speaking of not being able to read well, etc., wanted to let you know I started the Coconut Oil over the weekend. The container was large, and felt solid with a slight squish. I opened it, and to my surprise, had a hard time getting a teaspoon's worth. So, with that accomplish, promptly put it in my mouth and thought "OMG":D
Since it was already in there, had to wash it down asap. Where'd the coconut in the oil go????LOL. I like coconut. I was expecting a little taste delight but noooo...tasted like lard or shortening. My daughter, Katy, was in hysterics watching this.
And, I took it again Sun/Mon cause it's supposed to be good for me. But was I surprised that first time!!
hi judy well now you know what ive been going through the last 8 months you know that if it tastes bad it will be good for you remember your Mother saying that to you \\ actually i think my oil must be differrernt to yours because mine does taste of coconut slightly it says i quote'' A DELICIOUSLY HEALTHY EDIBLE OIL FOR COOKING AND BODY CARE \\ RICH IN LAURIC ACID \\ NO TRANS FATS NO HYDROGENATED FATS \\ NO CHOLESTEROL \\BETTER THAN BUTTER\\
NOT REFINED\\ I COULD GO ON AND ON BU I WONT MATE EXCEPT TO SAY THAT MINE WAS TAKEN BY SOME TRIBE THAT GOT MOVED AROUND THE PACIFIC FOR SOME REASON OR OTHER \ NO THEY WERE NOT HEAD HUNTERS MATE IF YOUR OIL GETS SOLIDIFIED JUST POP IT INTO A CONTAINER OF BOILING WATER AND IT WILL UN SOLIDIFY IF THERE IS SUCH A WORD IN ITS CONTAINER AND THEN YOU TAKE IT BY MOUTH I TAKE 25 MLS OR A GOOD TABLE SPOON OF IT AND MINE COMES FROM FIJI
I THINK THE TRIBAL NAME WAS BANYAN OR SOMETHNG LIKE THAT i will tell you the name at a later date\\ no i wont ive got it now\\ its called the wait for it \\ THE BANABAN TRIBE \\ IT MUST DO YOU GOOD IVE BEEN RUNNING AROUND IN A GRASS SKIRT AND A BIG HAIR DO FOR WEEKS NOW ONLY JOKING MATE WELL ITS NEARLY TIME FOR MY BED ITS 11--30 PM SO I WILL SAY GOODNIGHT TO YOU TAKE CARE OF YOURSELF STAY POSITIVE ITS HARD I KNOW BUT YOU CAN DO IT \\ I CHANGED OVER TO CAPITOL LETTERS
BECAUSE I CAN SEE BETTER AND I CAN READ QUITE well it just takes a pair of glasses SAY HI TO YOUR TWO YOUNG LADIES AND TELL THEM TO KEEP AN EYE ON YOU TAKE CARE EXCUSE MY IGNORANCE BUT WHAT DOES THE D. D STAND FOR I KNOW THE OMG see you peter jones queensland australia psp sufferer
I'LL GO CAPITAL TOO IF IT MAKES READING EASIER FOR YOU.
UH...BANABAN TRIBE, GRASS SKIRTS, AND BIG HAIR??? I THINK I MUST GET OUT A LOT MORE...!
YOU MUST GET THE TRIBAL 'VERSION' OF THE COCONUT OIL...THERE WAS NO TRACE OF LIQUID IN IT. IF YOU COULD'VE SEEN MY FACE THAT 1ST TIME...AND YOU WERE QUITE THERE IN SPIRIT BECAUSE IT WAS YOUR NAME I KEPT REPEATING IN MY HEAD AS I WAS TRYING TO MAKE IT GO DOWN - HAHA!
NEXT TIME I'M OUT, I'LL LOOK TO SEE IF THEY HAVE IT IN A DIFFERENT, MORE USER-FRIENDLY VERSION.
OH-YOU'RE NOT IGNORANT-CAN'T TELL YOU HOW MANY TIMES I'VE HAD TO ASK OTHERS MUCH OLDER THAN ME WHAT SOMETHING MEANS; BETTER THAN ASKING MY 2 LOVELY COMPUTER WIZZES WITH THE TOO FAMILIAR SMIRKS ON THEIR FACES...
OKAY - SOME PEOPLE, TO MAKE A HAPPY EXPRESSION USE A COLON, :, FOLLOWED BY THE PARAGRAPH SYMBOL, ). SO IT LOOKS LIKE 2 EYES WITH A SMILE.
SO FOR THE CAPITAL D'S...THOSE ARE EXTRA BIG SMILES; A COLON : AND A CAPITAL D. LOOKS LIKE THIS... 2 EYES AND AN XTRA BIG SMILE.
if at first you dont succeed pack up ive just wrtten an em and its lost somewhere not being computer literate im at a loss but i will try again\\ well mate you seemed to opened a can of worms with your driving ii have a confession to make im still driving and towing a caravan i have to go to report to my doctor every 12 months on my birthday to get a clearance form from him to say that i am ok to drive which i have to carry around with me just in case i get pulled over by police for anything i have just recieved my letter from the doctor
i have to go on my birthday every year in february unless he tells me its to time to finish up or cut it down to every 6 months i have problems here with getting out there are really big hills which we could never walk up in a fit to go shopping \and not only that i live in the sub tropics and it gets fairly warm here at times but the winters are magnificent but still quite warm \\ and snow is alright on a postcard\\ and the shopping centre is a fair old walk especially to get up those hills we go out nearly every day so a cab would be out of the question \\ anyway mate thats it on driving i feel i would know in myself when i could not handle it \\ now back to the coconut oil have you looked on the internet for the banaban tribe just have a look at \ Banaban extra virgin coconut oil there is still a tribe of them around but not as many now\\ and they are split up i believe \\thanks for the answers to DD i thought it was short for drunk and disordely or something anyway i will say goodnight to you take care of yourself peter jones queensland australia psp sufferer
Yea, the issue of driving is very very difficult. On so many levels. I see more negatives to driving than positives, because my skills are not that great. But, as I said, I don't go out everyday, and when I do, try to keep it close to home (Yes, I know the worst accidents happen close to home.) But, I have this drive, pun intended, in me that tells me to pull out the stops and give me a few months to try all of the outside therpies he's referred me too, etc. At the end of that window of time, I'm hoping I feel physically stronger, more energetic, co-webs in my mind swept-away and more attentive and less trouble with memory.
Not confusing my goals with perfection, but I'd be happy with good to significant improvement.
hi judy how/s it going ok i hope well just a quick one tonight you made a remark about spring was around the corner and you would be able to get in the garden thought i would just send this short poem to you
SPRING IS SPRUNG THE GRASS IS RIZ
HOW SWEET THE SOUND OF THE BIRDEES IS
NOW SUM' SAY THE BIRD IS ON THE WING
BUT THAT'S ABSURD THE WING IS ON THE BIRD \\\\\\ \\ THATS IT
MATE BUT YOU PROBABLY NEED AN ACCENT LIKE YOURS TO SAY IT GOODNIGHT PETER JONES QUEENSLAND AUSTRALIA '' YOU CAN DO IT MATE\\ TAKE CARE ======PSP SUFFERER DOES ANYONE KNOW WHO WROTE IT OR HAVE HEARD OF IT BEFORE \\\ DOES ANYBODY CARE WHO WROTE IT\\ OR WOULD NEVER WANT TO HEAR IT AGAIN I HAVE MY HANDS UP BOTH TIMES
Judy, Hate to say it but I don't think you should be driving. Why wait until you have an accident due to bad or slow judgement or a temporary short in your brain? Trust me it isn't worth your life or your family or members in another vehicle. I'm sure you have friends who would be willing to take you anywhere you need to go. Perhaps there is a senior bus/tram service in your area. I've not heard of halucinations being related to PSP as a symptom. I'd be more inclined to blame medications taken or combinations of medications. Think about Googling all your meds to see which have halucinations as side effects. If others with PSP have serious halucinations I'd be interesting to hear about them.
First to the halucinations. Over these several months, I've also been researching various sites to learn more about PSP. I do remember references to halucinations as being a symptom of PSP, but it was made to seem like a symptom of less frequency; all sites spoke a lot about vision changes, falling, swallowing etc.
When I brought it up to my Doc on Wednesday, he didn't hesitate at all. He said halucinations certainly can be a symptom of PSP, but happen less frequently. He differentiated between the kind I described meaning I know what I was seeing wasn't real and wouldn't hurt me. The other kind is more serious, meaning those who see what's not there, claim to hear voices, and are generally terrified. He did not say at all that halucinations are a psychiatric problem with PSP; they are a symptom of PSP.
Because I brought it up, he did say there was a medication he could prescribe to help with that but it's very sedative. I declined. Said it hasn't happened that often and I'm not afraid when it happens. But it's good to know there is something to help should it cross-over into the more serious ones.
Any references I make on this site as to what doctors I've visited have said about this or that, and especially my Neuro, isn't intended on my part to be all inclusive, or I believe he's the only Neuro out there that has the answers. Not at all. And sometimes he doesn't have answers; just gives me a "hmmmm".
If I hadn't previously read that a halucination/s can be a symptom of PSP, I doubt I would have brought it up to him, at least yet. But he's also so approachable and stands by "there is no stupid question", makes it a lot easier to be open with him.
I have no doubt in my mind whatsoever you are sincere in all you say; I've read your posts long enough to understand this about you.
In a perfect world, which it's not, I would not be driving at all. This issued has weighed heavily on me for months as I'm finding out my reaction times aren't the best anymore, etc. I would never forgive myself if I hurt my daughter because of an accident I cause, or injured someone else, or worse.
You stated you were sure there are friends who'd be willing to take me where I needed to go. While I do have a circle of close friends, my friend Connie, who I refer to often lives out of state. As to other friends, they have jobs & full lives, scuttling their kids from here-to-there, or in some cases, my friends are taking care of their grandchildren during the day to allow parents to work and are exhausted.
It just isn't that easy to 'get a ride'. I experienced this before PSP, when I went thru several orthapaedic surgeries. One period I'll point out is during late '06, I had back-to-back major reconstructive surgeries on one of my feet. I was off my feet for 92 days and was told to stay laying down with it elevated, or if up, absolutely no weight bearing on the surgical foot. To get to the main level, I had to slide my crutches down the steps and butt-scoot down; same getting back up.
What I thought would happen didn't materialize. At first, I was assured by several people, including from church (not including my immediate family; we were estranged; too much alcoholism; I couldn't handle it & needed distance; my choice) that rides would be provided as needed, because my girls were younger, people volunteered to help with making some meals, etc. I went into it feeling assured.
But people scattered like bugs almost immediately. Those that said they'd call, didn't. I decided not to sit & stew & become angry, which I was a little, because it was affecting the girls, too. So, I picked-up the phone and started calling those who volunteered. Time & again I heard "I can't take time off from work that day." Or, "I can't because that's our date night." Or "I can't because I bowl that night."
I took it personally & became quite angry for awhile. Kept asking myself, 'is this really happening?' There was no public transportation where we lived, meaning a bus line. Living on a very, very tight single-parent budget, I ended up taking cabs to docs, the store, even to either of my girls schools if they needed to come home early. And, yes, I had a short list of people I had weaned down to 'my best chances'.
This was also during a period of time in which my van didn't work for 2 years, so when I got better, it didn't eliminate the problem of 'getting a ride'.
Here's the lighter part. When I was forced to be a side-liner instead of a participant, I had a lot of time to ponder my own issues while continuing to take care of my own issues. When I finally got out of a cam-walker & could walk to the grocery store, I discovered things I never noticed before in spite of living in the area for years. Certain bushes and gardens various neighbors had I never noticed before because I was so busy 'doing'. And just chatting with people a long the way. Taking a second to compliment someone because they were cheerful, or find a kind word for someone who looked like they needed it. That's living in the present and where I need to get back to.
It took me while of pondering to figure something quite important out. I wasn't the 'problem', nor was their ill-will from those good intentioned people who quickly offered to help during a difficult time. Now, this is a truth that may only make sense to me because I lived it, but our culture, or the decline of it, is the biggest problem.
What I learned from my peers is they fill their lives with so much 'busy', they avoid living. And mostly avoid feeling anything but exhausted. And many are raising their kids to be the same way; over schedule them with activities, high expectations on grades, and add in volunteering in the community because that is now important on a college application. We lived in an affluent community and it was blatantly obvious at times I was perceived as 'different' which wasn't a good thing. Walking home with groceries, sometimes in rainstorms, neighbors who were kind to me before I started 'the big fall from grace', just drove by me. What happened to myself and my daughters, our debt, living conditions, and no transportation, just wasn't supposed to happen to an upper-middle class, caucasion woman, unless there was something I was seriously doing 'wrong'; drinking, drugs, gambling or whatever. I was invisible.
And there are a lot of 'me's' of all colors all around me. It is a truth that some people and sometimes their families fall thru the cracks. Yes, I did reach out for county assistance but the county I lived in counted child support as income, so it knocked me out of most services and by a breath. Thankfully, we did qualify for food assistance.
Back to driving. I learned of a program thru that experience called Metro Mobility. A doctor has to fill out a lengthy questionairre about why you medically need the transportation due to one or more disabilities, and I had to fill one out as well. The process took 4-6 weeks which is the norm. However, when I called them several times those first weeks after I was approved, it was a complicated and logistical nightmare. Rides had to be scheduled several days in advance, and were only guaranteed if they met their required head-count of sign-ups to go to a certain area the day you wanted. And coordinating it for a round-trip was almost never possible. To sign up to go to a regular drop-off/pick-up a few or more times a week was available only by a lottery system they hold 4 times a year. Tedious and frustrating and usually didn't get a ride; also operated on limited hours.
Metro Mobility is what I'd have to sign-up for here as well but I understand thru local media they've not made it any more 'user-friendly'. But it's an option, just not a good one. Tho I've since reconciled with my Mother/Sister, Sis is always too busy; in recovery which is wonderful, but one of those who fill their life up with busy to avoid living; next to impossible to nail her down. My Mom's 75 and has been having heart problems for months. I didn't move that far away, but I did move across the river, which would mean driving the freeway to get here; she just doesn't do freeway driving anymore. And, I don't hold it against her.
My oldest daughter who has special needs chose some time ago not to drive for safety reasons. She's right. She doesn't mind it, but the less driving I do, means the more isolated she becomes; trying to get her in a work program now via this new County, but it's a slow & frustrating process of Governmental dung.
I believe sometime back you posted on my blog, suggesting I don't drive and try to get my daughter in college who lives on campus to come home and help out. If I misunderstood you, I apologize in advance. Short answer is no, absolutely not. Neither of the girls had anything resembling a normal childhood; born with a rare genetic disorder called OTC (google if interested). Both were profoundly ill from birth til I finally got them properly diagnosed at ages 5 and 6. Took a lot of time, patience, blood, sweat and tears to have them this age and doing as well as they are. But it stole their early childhood, for sure.
Missy always ended up not getting the attention and nuturing from me she should have because of my older daughter's disabilities. Her irritabilities, meltdowns, etc. would suck the oxygen out of the room. Sounds like a terrible thing to say, but all true. Katy developed several disabilities arising from the undiagnosed, uncontrolled OTC, damaging her brain, so once medically stabalized, then came all of the testing/treatments/therapies for these other disorders.
In the meantime, where was I for Missy? An exhausted, crumpled up caretaker (their father wanted nothing to do with any of these issues; dumped it all on my shoulders; I'd give some back and back it came again, so they both grew up with parents that were enmeshed in dysfunctional nonsense).
Missy also has the genetic disorder I have in which she was born with malaligned knees and hips; started hurting her as a tween. She's had 5 hip arthroscopies to clean-up the joints, 2 of those surgeries leaving her on crutches for a month afterwards.
Our divorce in '02 devastated her. During 9-2002, both she and her sister were sexually assaulted by a guy down the street. She was never the same after that; too much information. I did make sure he was prosecuted; confessed to 2nd degree sexual assault and I made sure he became a registered sex offender. The emotional and psychological damage to her, and for years to follow, (she was only 8) cannot be described. She was in therapy for at least a few years after that.
To add to her burdens, she did help me out a lot following surgeries by running errands, taking Katy to/from where she needed to be etc. When the PSP symptoms started 2010, demands on her only increased. Know tho, that I spent the last handful of years acknowledging the situation/s she was in and how hard it had to be for her. during her 12th grade year, we spent a whole year in group therapy once a week, and therapy together, as well as she taking individual therapy.
So, there was just no way I couldn't get behind and fully support her going to college. She's sounded like an old soul since a young child, and has given much. She's only 20; it's certainly her turn and her right to grab what she wants by the tail and go for it.
She already sounds like my Melissa I remember from years and years ago. Her great giggle is back. Making lots of new friends. Adores her roommate; grades are excellent. She really needed to go her own direction.
So...this is my plan for the short-term. I have the right meds on board including 3 supplements. He's given me a referral for PT, OT, and Speech Therapy. All 3 can be accomplished out of one facility 6 miles down the road. I am going to turn my way too long habit of poor eating completely around and just do it because it's good for me.
And delve into trying as hard as I can to live in the moment and let stress roll off me.
I just want a couple of months to throw myself as hard as I can at this; I can't help but think after a few months I will be feeling more alert, physically stronger, get control of my aspirating and chronic thrust, and be more of a participant in life.
I do not, and haven't since last summer, driven at night. I often only go out a few times a week, and I keep it local. And for the last several winters, won't drive from Nov thru a part of April if the roadways are greasy from a mix of precipitation, or if we have snow.
I know I'm tasking a big risk by driving right now, but I'm very low on options. And on a fixed income, taxi fare to/from the rehab facility would not be doable. I have this 2 month window of time stuck in my head now. I NEED to try all of this in tandem. I know PSP will do what it wants to do sometimes, regardless of if you're doing all the right things. If it doesn't work, it doesn't work, and I'll let driving go. I maybe more safe in doing so, as well as the safety of others, but mentally/emotionally, it will be very hard on me. Like saying good-bye to a large component in my life; the ability to get around and the freedom it brings.
But then, it might truly stabilize me and minimize my symptoms; that's the side I'm rooting for.
Once again, I apologize for the length of this reply. If you don't read them thru, don't blame you. I can't quite explain it, but for the past few months I feel this sense of urgency to get this all out while I can. Life turns on a dime; who knows what will happen when? I promise you Jimbo, if by 3-19-14, I'm still cognitive enough to write like this, I'll shorten it up There's something to look forward to!
As always, thanks. But sometimes there really are no simple or simplier answers, and a person's circumstances are what they are. But I consider myself the most blessed of the burdened people I know, as well as one of the richest of the poor people I know. Everything is purposeful.
Judy, I now have a better understanding of your circumstances. You are in a very difficult position. You have to do what you need to do to survive. Sorry for being critical about driving.
Jimbo
Just thought I would mention my mum was on no medications at all when she had her hallucinations- I was more inclined to think she had an infection brewing or it was PSP.
I just responded to Jimbo about this; give it a read. I've done a lot of researching over these months are various medical sites, and have seen halucination/s referred to as a symptom of PSP quite a few times, tho I didn't give it much attention til it started happening to me after the 1st of the year. My doc also said his other patients often report animals are in their halucinations.
I also think what might be contributing to my halucinations is my eye-tracking difficulty. Getting more rigid with the straight ahead gaze and often hold my head up and back for hours at a time. Looking to the R or L is getting more difficult, and especially down is a problem. So I'm starting to see more 'dark matter' or certain shapes in my peripheral vision.
If halucinations are going to increase, but hopefully not, and become a part of my 'new normal', I feel blessed that they're not the scary ones, but rather the ones I can say outloud, "well, that's different...:)"
hi daughter hows it going ok i hope i just have a question for you did you get the cards that psp were going to send to us i think it was Debbie that was going to fix it all up\
i did ask if she could send something out on the computer and i could run them off myself but i never heard back from her\\ perhaps she is very busy \\ so if you still have the address she gave us do you think you could pop it out to me via this spot i would be much obliged thanking you in advance \\it must be great to be free of all medications like your mum was i only take 3 tablets myself 1 for BP one for my stomach \\ and one for sleeping a bit better anyway i hope all is going well for you thanks again peter jones queensland australia psp sufferer
Hi Judy, Just read through your reply's, very interesting, must have taken ages, you must have been a typist? Just thinking about all the 'friends' i had before i went too sick to go out, it is surprising how many of them i do not hear from any more. they all said any time i needed help they would be here for me. Now when i see them they don't really know what to say, i try not to talk about my illness unless they ask, but don't go into detail, they seem to be embarrassed? The only ones i really keep in touch with are my ex work colleagues on face book, but only occasionally. When i talked to one of them about this she did say it works both ways, i should contact them and try to maintain our friendship and explain that just because i have this problem i aaaaam still the same person!! i have taken this on board but i need to get up the courage, the days are going so fast i never seem to get around to it, but i will try soon.
Just had to get this off my chest, this is a great place to do it, but there is a lot of reading plus keeps my hands and fingers moving which is good x Be Careful
I can so relate to this. Can only go by my experience, but when it counted the most, people scattered like bugs. I do think in general, this or any other major illness, or disability, often goes outside people's comfort zones, and they can't get away from the 'source' quick enough. Just a guess, but I also think it makes them wonder about their own mortality and they just don't want to deal with it. Took a while & much pondering, but realized it was a reflection on them, not me. Hurful at first, but helped me purged those from people I could truly count on. And, you're right; we are still the same people which is the most important thing and our disease doesn't define us. Keep those fingers and hands moving, as well as trying to read, tho I know all of this is hard.
Yes I noticed mum had 2 loyal friends as when it came to older people they were scared it was dementia and didn't know how to talk to her because of mum's slow reactions. It was hard work sometimes as it was very one sided conversation but mum loved to listen to outside life!
Her sister visited a few times but found it too distressing to see her like it. Peter I have
scanned up a card front and back if that will be any good to you! send me an email address I can forward it to,
Oh, I'd appreciate that a lot; I'll message you my email address.
It's so unfortunate that people react adversely to others who have illnesses and or disabilities that sometimes are seen, or sometimes not easily visible. The reflection is on the 'well' person. Growth and enlightenment can come from experiencing the unwell; lost opportunity. Worst of all, the 'unwell' person can often perceive the negative reaction.
My oldest daughter with special needs has a few disabilities that stand-out and make her physical appearance different from others. Too much info for this post, just want to make the point that from an early age, if we were out in public or at a store, quite often a young child would stare at my daughter and ask the parent "What's wrong with that girl?" The answer I'd hear the most - sadly - was the parent telling their young child, "Leave her alone, she's a retard.". Or words to that affect. Right in front of us.
There's no amount of space, time, or words, that can describe how deeply that hurt my daughter. She would tell me she'd rather have the parent allow to just ask her "what is wrong with you?", so she could quietly explain.
There's also no amount of space, time, or words, that can describe my heartbreak for her in those situations, as well as enraged, and a lot of disappointment. There was no doubt in my mind where and why children come up with these hateful or biased beliefs. They learn it from us. Adults. I usually was able to keep my composure, but do admit to flipping out a few times.
There is no need for this, and usually based on ignorance, in this so-called enlightened society; from my experiences and observations, we have a long way to go before that were to be true.
Just my point of view.
Judy
I understand, I used to take out a friend who was thalidomide so I experienced her treatment through that. I also wear hearing aids and keep them covered as people don't stop to think that the aids remedy my hearing loss and talk to me like an imbicile when they see them! Love to tell people when they have know me for a while and they say -it doesn't show!
Oh, I do like that! Feels good now and then doesn't it? I am smoker who feels enough shame and guilt on a daily basis, I don't need it reinforced. If I had someone prissy in line behind me who felt it was their business to verbally disapprove of my purchase & smoking, I'd lower my head and say "I know, I know...".
However, since my PSP diagnosis, I developed a little more attitude when it's called for. On 2 different occassions, I had the high-and-mighty in line behind me who were quite verbal with their disapproval; once to the friend she was with; the other directly to me.
With my mouth about 10 seconds ahead of my brain, I turned, stared right at them and said "I'm dying of a non-smoking related illness and am doing the best I can today. Are you?"
The blank stares I received as well as no words was priceless. A little bit of 'shame on me' but not much. Kept a smile on my face for hours afterward.
i' keeping my eye on you my eye on you \\i should have said eyes makes me feel like a one legged one eyed pirate re ==== smoking im glad your mouth was 10 seconds ahead of your brain mate because it still shows that you are still thinking straight psp or no psp you are doing ok matey just keep that in mind and daughtemo 1 GO JUDY ! take care matey peter jones queensland australia psp sufferrer in the context of keeping an eye on you\\ your blogs and questions etc just in case i created the wrong impression to some bloggers on this site
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Can you honestly say, hand on heart, that you would trust your reaction times and be able to stop suddenly, if you needed to? Maybe your neurologist could advise you. 
Considering Nursing home for husband with PSP.
Update on how well my mum is doing since leaving hospital 7 weeks ago 😁
My Week!
Is this normal? Am I expecting too much?
