9/30 Moving Along

Happy Friday.  Its freezing here today.

I had to get up early to move my car for street cleaning so buck and I just drove down to see Richard with a REAL egg mcmuffin this time.

I found him on the 6th floor working with his physical therapist just at the end of their session.  They were practicing getting up from a seated position and sitting down slowly instead of flopping.  He needs that thigh strength back, and he was taking a rest.  You can see his left foot betraying him here, which isn't always but still an issue.
      

 

Buck is so sweet to everyone here that I actually visited the SPCA site today to look at certification classes.  I had to potty on the way out and the big guy was sitting there he said HIIIII Buck, asked him if he wanted to hold him while I went to the restroom and Buck sat there with him like a champ.  During this video he laid down on his belly and waited for us, and with Richard he most often doesn't take his eyes off him - like locked on his eyes.

I took him a vase of some fresh clippings from the jasmine vine on his deck that smells great.  

Worked on a website the entire afternoon, and Im starving so Im outta here to fix that and hopefully get to bed early.

His cough has subsided, said he saw the doctor this morning who found it humorous that he got a flu shot?  I think that might have been a mis-communication with the Dr thinking he was having a crazy moment. He got a flu shot at the VA not there...perhaps the Dr didnt know that and I wouldnt be suprised

VA transport set up for Monday.  He'll be there with a pretty big group a bit early, so i will try to be as well.

9/27 9/28, 9/29 Catch up

Okay

I can tell who my daily readers are because some of you go into shock when I dont post, so here's my three day update of whats been happening.

On the 27th Shari went to visit in the late morning on her way to the airport to pick up Arlene.  She called with a good report that he was lucid and looking better than before.  I have afternoon duty but there was a major fire a block away at his Walgreens on Haight and Fillmore.  Turned into 4 alarms, and they had the area shut down which meant my Fillmore bus as well.  I kept waiting for it to settle down, but they kept calling more alarms, and the news helicopters...it was a mess around here..

 So everyone that was ON the Fillmore bus was forced off at our corner making a massive wave of people, and everyone that WANTED to get on the inbound bus (me!) was delayed infinitely.  I eventually gave up and walked down there to see and here's what I found.



Reports today are that 30 people were displaced and estimates of damage are over 2 million dollars.  Businesses near and below were open today but Im unsure of Walgreens.  There is still a large debris pile that you can smell walking down the hill.

So admitting defeat on my 22, I had to get creative on my bus route and walk a few blocks away to hop on something else and got to him after dinner as the sun was setting...this is largely due to the fact that the last bus i got on randomly stopped many blocks away announcing okay this is my last stop...WTF?  So I walked.....and I had to go to the grocery store above him on the way, so I got him a fruit tart....which he was told was bad for him so it remained uneaten the next day.

When I get there he is siting up saying I was just getting up.  This was happening because his bed was soiled.  His bed is soiled because he pushes the call button and no one comes in time, and he is a fall risk who is not supposed to get up on his own so he uses his urinal.  He often spills it.  He is completely aware of this.  It is not a crazy moment it is that he is using it laying down and cant maneuver it.  I told him about the fire and we went to the rec room to try to find some news while they changed his bed, but the news was over so we watched some random TV together and talked.  Hes wheeling himself around on his own just fine.  I gave him a good shave, and said goodnight, and trudged home with my bag of groceries and made a salad at home.

the 28th
He wants an egg mcmuffin, so I drove in the late morning with Buck and stopped and got a couple for him.  note to the not so frequent McDonalds visitor...a sausage McMuffin has no egg!  I was a minor failure but he still liked it well enough. 

When I get there he greets me with this loud and clear Barry White voice.  What the hell is that coming out of your mouth I like it!  I havent been able to hear him so well the entire time Ive been here, but the fact is that hes been up all night coughing with chest congestion and a cold.  He doesnt feel well.  The upside of that is that the coughing has stressed his vocal chords as well as kept the phlegm moving and his voice is deep and clear.  Buck snuggled with him in his bed until he called mercy from his weight and size.  I had only about a 40 minute visit with him and he was moving into therapy, so I went back to my car with maybe 10 minutes left on the meter.

We went from there to PetCo because I was completely out of poop bags, and had to use grocery sacks for our morning walk.  From there we were already close to the coast so we drove down to Ocean Beach where I had seen dogs romping on a drive by before.  Buck had fun.  If there is brain freeze for your feet that is how this water felt.  COLD!

Arlene and I were to meet the next day, so we went home, got mail sorted and together for her and worked on my own personal paperwork, did a load of laundry etc....  and worked on one of my websites.  Way back in New Mexico I thought I lost a rubber bumper for my laptop desk, and on my ride back from there it is sitting in my front seat.  Ive been looking for this for a month.  Thank you!

the 29th
Even though Im up early, Buck is doing the snuggle thing and I cant get out of bed. Arlene calls to let me know she was leaving soon as we were in the park walking.  I had to hightail it home to try to gain control of my hair.  She comes to get me near 11am and she is working on the Special needs trust stuff on a phone call when I get to the car.  She has a lot of paperwork to get through, and she is still jet lagged.  Has a list of todos working.  We went straight to Richard.  He was up in physical therapy so we walked up the stairs and of course when we get there hes wheeling to the elevator to go back down.  Therapist says he would be better served with some good sneakers because hes having issues with his left foot flexing up.  They would give him better walking stability.  They are in my purse now. 

Arlene is shocked at how swiftly he rises out of his wheelchair to get back into bed.  He is getting much better at this.  Physically he is really getting much better, and everyone's reports are that his color is back to normal.  He has that olive skin back.  And while he is physically definitely making huge strides he is still far from being able to return to home.

We did get good news, however, that his initial 20 days paid for by medicare, has been extended to 100 days - which puts him a couple weeks before Christmas.  He can stay up until that time as long as he is making progress.  If progress halts he gets booted.

She called into his cell phone company and got his voice mail password.  We haven't been able to listen to his mobile messages since she has been gone.  That took for forever, so they were talking about her trip as she was waiting, and when it was recovered she wrote him instructions on how to retrieve his voicemail.  He listened to a couple but I don't think he made it through all 5.

She also emailed me later in the afternoon with his proper email password, so I will start printing off his emails and bringing them up there slowly.  That will be a good daily thing for him to exercise his eyes.

She had an informal meeting with Bella, and we set up a more formal meeting for next week...Tues I think?  All therapists together for a state of the union address, and to try to get a better plan together to push him harder.  He would LIKE to do more, but he cannot because he can not get up on his own, so he ends up sitting and waiting for someone to come get him.

He still has a chest congestion, and Arlene says something to the nurse - who is the infamous AWFUL NURSE - who completely denies that he even has a cough.  chest clear, no cough no problems.  Arlene is like i just sat with him for 30 minutes and he hasn't stopped coughing and hes coughing up a greenish gray stuff.  Are you denying he has a cough?  Yes she says.  Bella is right there and she says Ive heard him cough all day....FFS!  I'm gong to have the I hate this nurse speech next week.

Monday 9am is VA Neurology.

9/26 Still well

Not much to report.

VA Neurology dept. has accepted the moved up date of October 3rd, and changed it into a general appointment.  Dr. said they may not be able to give him the botox, but they would do everything they could to assist him with any issues, and to just go ahead and come in.

His voice is strong today, he is working hard with his therapists across the board.  tomorrow is weigh in day, and I'm anxious to see if there is a difference since he has been eating institutional food for the most part.  His vision is coming around to more better days than bad.  Left motor is still off target.  He is pain free.  He still has his sense of humor, and he is always full of helpful, and thoughtful advise regarding my city stay adventures.

Arlene and Lee return from France tomorrow afternoon, and Shari is going to stop by and see him on the way to the airport to pick them up.

Last Friday marked 7 weeks since the initial stroke, so with a perspective 3mo recovery window he is about 2/3rd the way in, and I think his current condition reflects that.

Biggest issues remain, speech, phlem, strength.

Last night I was googling him and ran across something called Fiddlah, Please!  Has anyone heard of this?

http://www.google.com/search?q=Fiddlah%2C+Please!

9/25 Doing good

Carolyn was out of here at a early 7am on her way to the airport.  I used my morning to give Buck an extra long walk and get caught up on some work I postponed while she was here.  Buck met Marmaduke at the park - if Buck is the most beautiful and perfect lab, Marmaduke was the most perfect and beautiful Great Dane I have ever seen with a gorgeous face.  He, however, was also not fixed and a hefty 165 lbs...I had to leash him again because he was having a moment of love fascination.  Buck is very attracted to dogs bigger than him.  Last week we had an episode with a burly golden.  Harmless in the scope, but not the best manners in the world.  We also met the cutest retriever who was prancing down the hill off leash and buck went to greet him and bumped right into him.  He was blind.  When he realized it was a dog he started hopping back in forth in a playful manner trying to figure out where Buck was.  Buck of course is peeing, and the blind dog prances on down the hill.  Very cute happy little spirit.

Bernie the landlord called me from the VA looking for Richard.  I had to redirect him over to Tunnell, and Richard later said he didnt even recognize him.  He said do I know you?  Bernie started laughing then it struck him...Bernie!

I got caught up in trying to finish some work and looked up with only 30minutes until I am supposed to be meeting the masseur.  This of course means I have to abandon the holy grail parking space on a day where I KNOW tons of people are going to be coming through for the faire and Haight.

His area is packed as well, so I had to use the cramped garage for parking.  Michael the masseur is waiting for me in the lobby.  We go up and Richard is not in his bed.  A quick glance around and his CNA says hes in the rec room watching TV...really?!

They probably made him, but good for them.  That gave me a little ray of sunshine that they are working with him and encouraging (forcing) him to get his ass out of bed so he can transition.

We walked together to the rec room, Michael is saying he can do it while he is sitting in his chair, but Richard would rather do it laying down...probably because he was kidnapped to that room in the first place.  Hes watching Animal Planet with the aforementioned super old guy, still on his IV so hes attached to the rolling IV thing.

I walk Michael and Watson back to the room, and go get Richard who holds the rolling IV thing while I wheel him.  The space is SO tight and cramped its hard for all of us, the table, the chair, the walkers...just crap everywhere so it took a while to get situated. 

He is reporting no pain.  Occasionally pain in the rear left shoulder.  While Michael was working with certain parts of his legs, his feet are twitching and I couldn't tell if that was Parkinson's spasms or Richard wiggling his feet.  Asked him after he said it was him doing it.

While he was getting that done, I went to find the CNA and nurse.  They both report he is up and doing well.  He's completely cleaning his plate at his meals.  His blood pressure is still slightly high at 144/68 ish.

He was laying close to flat, but in the middle needed me to help him raise up to clear his throat.  He asked me to find out about the speech therapist to see if they could suck the stuff out.  This is still a concern of mine in the independence scale, but the awful nurse was on duty and I asked her to request it after shift change near meal time.


Helped Michael find his way out and we parted at the stairs.  I don't even get how he gets around..the guy is fascinating to me.  We had a great conversation in the elevator on the way down and he was telling me before the HMFIC switched recently they were doing a lot more art therapy, music, light therapy, spa, massage stuff.  New guy cut the budgets across the board and they lost the majority of their programs.  Still there was a guy playing the guitar and singing to a crowd in the cafeteria...

Back to Richard and we did all of his vocal stuff and sang a song together.  His speech is still his main complaint.  Hes still having difficulty holding his tongue between his teeth and swallowing, but he got through three of them.  We talked about other ways to work that rear tongue muscle.

Reminded  him of Arlene's return in a couple of days as well as my teleconference with the Neurology department and asked if there was anything he wanted me to specifically address with them.  Only the phlegm he says, and also that sometimes at night when he is trying to go to sleep, it feels as if someone is dropping a medium weight necklace on his left collar bone.  He gets that sensation.  I encouraged him that this might be a sign of healing and the nerves repairing and firing there as this was the side he was most affected on, and that the shoulder pain on the same side could be a result of the same but that I would address it for him in case it had significance.  when asked about the hallucinations he said they have been totally gone.  I'm leery of this response because of his admitted manipulation of the nurses in information giving, but he does seem mentally on and lucid.  Bernie reported the same in his conversation with him....I'm not sure if he would withhold information from me or not.

Get back to the garage and someone has double parked behind me and is now not responding to the calls to move their car.  I had to track him down myself and found him in the cafeteria with his mother listening to music.  Thank god for the garage logs.

Parking faerie came through even though the streets are bumper to bumper around here today, and I parked just on the corner of his block.

Perfume tester for the day is Hermes Voyage, which Richard caught a whiff of as I was helping him clear his throat, and said yum.  I quite like it too, but its missing one earthy element for me.

Carolyn the Jasmine is alive and opening its blossoms.  I can smell it as I'm typing.  I'm going to bring it to Richard tomorrow.

9/24 avoid the morning

Last night we stayed in.  The fog came rolling in early and it was WET, cold, and very overcast...moreso than it has been since Ive been here.  We walked down to the Fillmore whole food and got makings for a salad, and got creative.

This morning the weather remained the same.  Overcast, wet and cold, and it remained that way the entire day.  The sun tried to peek out late in the afternoon, but the fog was already on its way back in so it won in the end.

Richards personality on the morning visit matched the weather.  He was surly ...wanting to sleep, feigning sleep, and we didn't feel like forcing him to get up and visit so we told him we'd be back later, but still left feeling defeated...and trying not to take it personally.  On his end I understand - tired, constantly bombarded without privacy, but on our end...the only reason we are in this city is for him...and Carolyn is only here for a few days.  On our way back to the car we saw and heard a family of falcons exercising in the air above us.

The night before we got on a cleaning spree, and we continued that with a visit to Bed Bath & Beyond for a collage picture frame to put some of his new picture pile up for him, and some other cleaning supplies, but before that......

We left the center and went to Market to try to find a department store.  Carolyn's birthday gift to me was to help me find a signature scent for my perfume, so we headed to Nordstroms for a smell-a-thon.  We had lunch at the cafe there on the top floor which was wonderful.... We shared a dungeoness crab brioche that came with really yummy fries and a kalamata olive aioli, a side of asparagus which were HUGE, and for dessert we had a trio of coconut macadamia gelato, blackberry cabernet sorbet and mango sorbet.  The views were incredible up there, and we got there in perfect timing with people waiting for a table just a few minutes after we arrived.  She brought me a book called PERFUMES, An A-Z Guide which gives a detailed overview of fragrance molecules, and then delves into thousands of different fragrances describing each.  Falling back on my absolute scientific methodology applied to all things in my life which require an actual decision, I quickly got overwhelmed not even knowing where to start.  I decided to just smell each one, get samples of the ones I liked then look them up to find the common bonds to help narrow my search.

When we get back down to the cosmetics floor Carolyn spots a rear wall that is dedicated to fragrance, and let me tell you this was like visiting a gourmet perfumery with wait staff with white clothes draped over their arms ready to serve you champagne.  At each display they have a big bowl of small empty atmomizers that you can fill to take a sample, and little shot glasses of coffee beans to smell to reset your nose in between.....REALLY?!!  Trust me when I say I smelled 90% of what was there.  I ended up going home with 8-9 samples, and had 4 on my body, one on each wrist and one on each crook of my arm, plus whatever was on my fingers from making my own samples...most of my samples were made for me by the staff.  I was a walking french whore.

Im pretty sure one of them turned into Cynthia - Chanel Chance Eau de Fraiche....correct, Cynthia?  I also found an exact replica of a perfume I wore for a few years purchased on one of my trips to London which is like a vanilla cigar this one was called Butterfly.  What Im REALLY looking for is a rendition of the Yankee Candle Sage and Citrus, and I smelled it once on a Japanese woman in Houston but I cannot for the life of me remember the name of it - only that it was Parisian, and possibly not available in department stores.  It was ethereal.  My nose can make me VERY happy...but its also very sensitive...having all the samples is a fun way to try something for a while before committing - STRAIGHT up my alley.

By 2pm Carolyn was waiving the white flag, so we headed to Bed Bath & Beyond and made it quick then home.  We washed, wiped, fixed shades, dusted, organized, arranged, piled, trashed.  Its not that his place is filthy, it just needed some deep cleaning of things that hadn't been done in a while. While we are winding down with that, Carolyn is feeling my pain trying to pick a dinner spot, preferably near Richard.  She settles on a Thai place which has a lychee martini.  If it was possible for me to drink this as my only sustenance I think I just might.

He is sleeping when we arrive..what else is new.  He is surly again, but I give it back to him and he immediately wakes up.  he is alive and well.  Mentally with it, and sharing humor and smiles.  His dinner came and he ate every single thing on the plate, and drank most of what what given..sans for the mighty shake.  Now that I have my glasses I can read the label - Skim milk, maltodextrin, corn oil, soy protein first 4 ingredients.  We left it.  He talked about playing a game with the nurses not giving too much information so that they didn't write down negative things on his chart like non responsive when he doesn't want to take a shower.  I tried to encourage him to flip that to his advantage and communicate honestly so that they could model their care better to his needs since he is paying for it and all.  We stayed for a little over an hour, then walked down to our dinner reservations.  red pumpkin curry was incredible, as was the drink...and an affordable meal.  I might return there as well.

He dropped his norelco / phillips electric razor and lost a piece that holds the head down, so while we had purchased a new blade assembly for it, we could not get it to latch closed, so we had to swap out for his Braun which he cannot charge on his own there.

We left him with that and his hand held mirror so he could get his shaving done.

SNL season opener is with my heart throb Alex Baldwin, and Carolyn has an early 9am flight out.  We made it through the first skits.  Folsom street faire is this weekend and there are RAGING parties all around.  Roaringly loud so we both slept with the TV on to drown out the noise.  While waiting for SNL to start I cruised the photo album of the Faire to get a taste of what was going on down there.... that thing is WILD!


Sunday (today)  brings the blind masseur back at 2pm.  I will make that my only visit.  He is reporting less back pain, and good physical therapy sessions.  While cleaning we found a leg weight which we brought up to him so he could hold it and do arm exercises to help his strength and muscle mass.

He is still on the IV.

9/23 ugh

Im either hungover from a bottle of wine, and a glass of prosecco and port or I slept weird or Im coming down with something.

I just don't feel well.  All I could find in my bag was low dose aspirin so I took 4 before we left.  We were supposed to meet Bill for breakfast but that didn't work out, so we left after a cup of caffeine, dropped buck off, and went out to Richard.

He was bad.  Completely unable to swallow normal or thickened liquid.  Couldn't clear his throat, complaining hes feeling awful and the phlem in his throat is bothering him.  Didn't have the strength to rearrange himself in his bed...

Met with Igor the social worker and went over the Oct 3rd VA appointment and transportation, met with his nurse to talk about his fluid intake, and requested him back on an IV because of his inability to drink....which was a hassle.  Requested they consider aspirating him or giving him something to dry up the mucous....also a hassle....everything felt like a hassle and I was frustrated he seemed to be back sliding.  Requiring a machine to remove the phlem doesn't jive with becoming independent to me.

Did his vocal exercises with him and left feeling quite defeated and worried...and still personally awful.  Im sweating in a sleeveless shirt, and my head is pounding. 

Carolyn and I went to a dim sum place he suggested and had another great meal.  I'll go back there again before I leave for sure.  Left and dropped her off in Golden Gate Park at the Japanese Tea Garden and she enjoyed a visit there an the the DeYoung museum.  I came home, took two advil, and a sudafed and took a nap, and on my way back Im thinking that maybe since he has just had so many good days hes just having a bad day and needs to rest.

I felt better after a rest, and then the VA Neurology department calls saying that whoever called and moved up the appointment side stepped and that they only do botox every three months.  His last was July 14th, just two weeks before his bleed.  I explained that it was supposed to be a lot more than just the botox, he was supposed to get a swallowing exam, his meds reviewed and the botox...that hes lost a lot of weight, he is having difficulty swallowing, and that the phlem was becoming an issue.  She starts reviewing notes, looks like maybe the swallowing exam was revoked possibly, and in the end she is only an appointment review person that works in the clinic.  She would get together with the team on Monday and have the Doctors contact me in the afternoon....ugh.

In my mind this is all a snowball effect.  If he cant drink he cant get hydrated, if he cant eat he cant keep his strength up, if he cant do these two things he can't utilize his time in rehab.  Parkinson's is an evil evil machine...and I am a worry wart.

Called the blind man massage and got him set up for another 30 minute session on sunday at 2pm.

So we head back over with Buck and utilized their parking garage for free parking.  When we arrive to his room he is sitting up eating his institutional dinner.  Thank god he is pretty much back to normal and low and behold he has an IV in.  Nurse says hes approved for 4 bags and they started it around lunch time which is about when we left last time.  He had just had his meds.  He said he did his physical therapy well today.

This is such a roller coaster ride, but if I put it in perspective the good days have outnumbered the bad days, and the bad days are not every other day like they used to be.

I really really really need to get him into VA for the Parkinson's review stuff, so I am looking forward to Monday already.

9/22 Its my birthday!

My oldest sister Carolyn came in for the weekend and tasked me with 'pick a place to eat...any place'.

Let me just admit flat out I am OCD in making decisions.  I CANNOT make a choice until I know every single option with intimate details of each, then weigh them all THEN decide.  So this is a task of epic proportion....in a foodie town with Michelin star restaurants.  So taking the easy way out by selecting a chefs tasting menu somewhere just seems the cheap way out...because of course...it doesn't involve compulsively obsessing over every detail and weighing options.

I hope that gives you a glimmer of my day today, because I spent the large portion of it - outside of a trip to the dog park with Buck, digging into the depths of San Fransisco looking for MY perfect place if I could pick anywhere.

What I ended up choosing was Seven Hills - this place is close to where Richard is, and is a farm to table Italian place in Nob Hill / Russian Hill...and damn it I couldn't get my mind off Ravioli Uovo no matter how much more I searched...and trust me when I say I searched.  Fate guided my way as well as every other place I had on my short list had reservation times disappearing off availability so I pulled the trigger and committed...EEEK!

Carolyn made great time here.  Took BART from the airport and then a taxi from city center.  She was here before I was even done with my hair and dressed.

I went to a bakery that Richard loves in new Chinatown yesterday and picked up a couple of mousse / tarts and a box of candles, and we made it to him at rush hour traffic.  He was so happy to see her.  Big smile, some big laughs, and I pulled out my tarts and lit a candle and made him sing me happy birthday :)  He of course has the 411 on everything and knew exactly where they were from.  We visited for a while and left at about 6.  He was way down low close to the ground, and I said why are you so low?  He said I don't know - I found the button recently...and I reached around his head and said its this one, and raised him up a bit more normal.  Said goodbye again...then have another thought when i see a new face nurse and think oh I wonder if the nurse I hate got fired- I didn't look at his board to see the name of current staff, so back to his room and he is now about 5 feet off the ground way the hell up there... What the hell is going on ion here come back down!  That was a good laugh.

So dinner.....ooooooooo dinner.  Parking faerie has a spot directly across the street from the front door.  We are probably 20 minutes early and have a glass of prosecco, and are the only people in the restaurant besides staff.  Then music comes on and it is my favorite song of all time, and it is the most obscure redition of an oasis song that I dont even really think many people even know exists...but there it is playing for me in the most profound way. 

The ravioli was rich and I need to use brown butter more often in cooking and lather something up in egg yolk more often...heart don't fail me now. Bottle of Sicilian wine, sweet bread tortellini, a beef special with mushrooms that were pan seared so they were sort of crunchy on the outside but still mushroomy on the inside and bone marrow...home made ricotta cheese drizzled in honey with orange slices for dessert and a glass of port.  Seriously good food and we got out of there for under $200.

Thank you to everyone who sent well wishes, gifts, texts, emails, and generally good energy my way today.

Tomorrow morning we are having breakfast with Bill, and then heading back over to Richard for the afternoon.

9/21 9/22 VA switcheroo

Going to make this quick as its my birthday today, and I have cake to eat and places to go!

Yesterday was a big old wash of a day.  When the VA neurology appointment was made and I was notified by phone, I mistakenly thought that the appointment was for september when in actuality it was made for October 24th. 

This is waaaaaay too long.  Hes lost a lot of weight and needs those meds reviewed, and the whole swallowing thing has become a HUGE issue.

Ambushed yesterday by multiple phone calls from Tunnell wanting to have a 'meeting' with me regarding me giving him liquid to drink.   His dietician...whos seen him three times in a month, his speech therapist who just started regularly working with him, his social worker Igor started the whole thing in the morning.

I said Im not too sure Im interested in a 'meeting'.  They need to understand that he was becoming severely dehydrated and no one in that facility was doing anything about it, so I was.  I think the bottom line is they are worried about legal liability should he have an issue without anyone there....but more importantly why has it been nearly a month and they are bringing this up now?

Dietician Im explaining the value of real whole food nutrients and not chemical laden crap.  She says all the food is FDA approved....the same FDA that is approving multiple medications that are killing people, deforming babies, and permanently damaging organs, right?

Anyway...Richard and I talked on the phone several times during the day about what was going on.  I encouraged him to not wait for his therapists to show up any longer and to do his own vocal exercises everytime he was awake.  And to do arm lift and things of that sort to take better control of his own desinty which he agreed was good advice.

I intentionally took the morning for myself to take Buck out for a nature walk, but he was being an asshole, then on the way back I got the first call from Tunnell.  I was emotionally charged so put off my visit for a bit to try to tackle the VA situation.

I was home bound for the most part waiting to hear back from my VA contact to try to get him in faster.  I finally got him moved up to October 3rd about 15 minutes ago.

9/20 Blind man massage

I forgot to mention last night that while out of the sandwich shop and on my way to the bus my phone rang with his cell phone caller ID, but its not him its the recreational therapist at the facility.  Richard has asked her to call me because he just got a free 10minute massage but wants a longer session.  I set him up for today at 1p to have a 30min session for $25.  The masseur is blind so the rec therapist is kind of his advocate in the facility....blind? really?  This could be interesting.  She set up the appointment liaisoning between us both and asked me to bring cash because again, he's blind.

So this morning I know that I have to stop by the bank to get some cash, and hopefully be there before he is.  I made a 4 cupper with 8 cups of grinds :D   I left the house, and literally caught the bus by running.  I'm in a sleevless shirt with a jacket and its hot as HELL outside...the bus smells like urine, Im starting to sweat, and now I'm getting a you just had too much caffeine nausea...that with the smell and the heat I think I really am going to barf.

Realize at my normal stop that I left Carolyn's lemon drops at home so ran (again) across the street to take the approaching bus going back.  I sludge back to the house grab the candy and a bottle of water then back to the bus again...I have no food to eat...water is helping but still feeling gross.  My entire bus ride there, however, is like a perfectly timed symphony.  Off one and step onto the next that is waiting for me.

Walked to the bank, got cash and need to break a 20 on something and im voting food, so I walk past Tunnell to Walgreen's and buy a couple bananas to try to settle my stomach and some wasabi peas for us to snack on later.

At Tunnell there is a firetruck outside, an ambulance, and a couple non emergency transport vehicles.  Firetruck?

Sign in get to the elevator where several people are waiting and a management person comes and sticks a key in the panel saying I have another crew coming in now - ie he needs the elevator for the emergency that the firetruck is there for.  I say tell me you are not going to 508 to which he replies I'm not at liberty to discuss that ma'am.  A 'NO' would have been nice?!  I'm now running up the concrete stairs because I damn well am going to beat them there if they are...sweet baby Jesus by the time I got to the flight between 4 and 5 I thought I was gong to die or my thighs were going to spontaneously combust.  Come bursting out of the stairwell and there is Richard sitting on the edge of his bed having his first normal meal of a pork chop with his speech therapist. They are both like what the hell is wrong with you?

Don't mind me - I think I'll go eat my banana now.

So they finished up.  He survived a real meal, and we are visiting.  I brought honey dew water.  The wasabi peas I bought was like a big bag of little bags if that makes sense.  He wasn't interested in either.  We talked about the city and hes already dismissing me,but Im waiting for the masseur.

They are maybe 5 minutes late we all get introduced.  I pay the lady who then gives the money to Michael, the masseur, and as she hands them to him she says this is the $20, and this is the $5 and he puts it into certain places in his pockets so he knows what is where.  Richard loved his massage from him yesterday and we had talked about our secret theory that maybe he is gifted in feeling energy zones since he is blind the gift was exercised more.

Michael's working dog is Watson.  Not the perfect specimen of a German Shepard but still a little puppy love in him and very loyal to his dad.  He said this is his second dog.  Hes about 3.   The first died of cancer around 10.  This is very much a strange connection to Uncle James at this point...I'm digging the serendipity feel to it all.

The guy is amazing.  Not only is he blind but also hearing impaired, and wears those over the ear hearing aides like grandpa had.  He doesn't speak like hes hearing impaired though...but the two of them together trying to talk was little bit funny.  Richard is soft in his voice and michael sort of is as well - and Richard cant hear perfectly... kind of a comedy waiting to happen but never really did.  Hes certified in this and has been doing it for about 15 years - about 7 at Tunnell, and is also certified in some long asian word which had to do with massage also but like massage and reiki put together...and also as a physical rehab person focusing on preventing atrophe.


Richard is bare bottomed again, I explain his major complaint is his lower back from sitting for so long does he want him on his stomach and if so should we get some shorts to put on.  Hes like no no and no some more, let him tell me, and he can lay just like this - however he is comfortable.  Richard is practically comatose through the whole thing.  This is not like a normal massage.  He is doing something with his fingertips and butt of his hand.  Richard said it felt amazing.  He worked on his knees, his back, his left arm, his neck, the whole kit n kaboodle.  He has a little black thing in his pocket that he holds to his ear every once in a while which I think tells him time.  He raises it one last time and says times up.  His friend has gone to lunch and she is not back so he asks me if I would escort him down to her office which I do.  He holds my elbow and we are talking talking talking.  Really amazing guy on so many levels.

He even teaches doggy massage!  ha!  So we talk about maybe doing it again, and I head back up to Richard who is full of life now on the edge of his bed, drinking Aloe water and trying to get into the wasabi peas.  The peas turn out to be kind of on the small size in diameter and it was really a no go for Richard.  Although good exercise to pick them up and get them to his mouth, the eating part was an issue so we ditched them.

His weight this morning was 148.2.  I think that is probably about the same as the VA last week - he was weighed later in the day there...maybe another slight gain.

They don't have his upcoming VA appointment paperwork there so I have to track that down tomorrow somehow

9/19 Real Food

He called me at 7am and said Im up.  You're up?  Yes, Im up in my chair...bye.  and hung up.  o.O

okay?

40 minutes later he calls me again.  Buck is sitting in the sun and wont come to me.  WHAT?  Richard you are having a hallucination, where are you.  Have you eaten this morning?  No.  Im in my chair.  Richard you just took your ropinerole you need to get some food in your stomach do you have food to eat?  Yes.  I'll go eat.  You think Im having a hallucination?  Yes you are, Buck is here with me.  Interesting, he says. Later when Im talking to him about this he says that his CNA comes in and he tells his CNA, you know I'm having a hallucination so you are not really here...to which his CNA replies...oh really?  hehe.  We laughed about that for a while.  Here's the thing.  This hallucination had ME standing at the end of his bed...but he called me.  And also him saying buck is sitting in the sun...I showed him that picture of buck in the sun at Alamo Square yesterday.  Its almost as if his memory is cross wiring.  We discussed this.  He said that visually everything is completely real and there.  These seems less than before, but he was also doing this prior to the stroke and I have no barometer there.  This will be discussed at the VA neurology appointment.

My glasses were finally ready today.  This place is in the financial district, and in my mind I have no idea where that is in the city in comparison to Where Richard is, but after fumbling my way with the bus from there to him I think its East. 

I walked by a nice looking lunch spot called Urban something on the way that had those yummy Vietnamese sandwiches, so when i was done I doubled back there and grabbed a couple then headed to him.  Stopped at the corner Jeruselum store to find a drink and got a couple bottles of that fermented tea stuff that all the rage - Kombucha. One was a green power pack of vitamins probiotics and vitamins the other was a guava something.  I tasted both before I shared and the green one tasted like a cat turd so I gave him the guava.


When I got there the speech therapist was working with him.  They had a small glass of water and he was practicing taking sips, swallowing properly (chin tucked) checking his voice for rattle, clearing his throat, swallowing again...  Raise you hand if you remember the annoying rattle grandpa always had in his voice.   Richard is not allowed to have that although he does often.  He has to continually clear his throat.  I swear I read somewhere this was not the appropriate action with Parkinson's.  They are worried that will go down the wrong way...how that would happen I still have not figured out.  But the good news is that after that whole thing today she says they are going to move him to a regular diet tomorrow.  So I promised no outside food to give him a chance to try to survive on it.  Lets be honest...hes pretty much been on a normal diet since I got here much to their grumblings about it.

So I say to him...do you remember grandpa used to always have that...he said yeah...I though it was a Sicilian thing you inherited at a certain age....  HAHA!

He did all of his therapies today.  Physical they worked on strength.  He did arm bar , and a rubber band stretch exercise.  Speech was swallowing and throat clearing, and occupational I'm not sure, but his left is definitely getting better.  Less tremors, still difficulty steadying perfectly but it is not as bad as it was.  His targeting with it is improved as well.

In the middle of our sandwich he got up to use the restroom and walked there on his own, but was not completely steady on his feet.  He also walked himself back to the bed and did not flop, but rather sat down proper.

He had a full day today, but I gave him the Arlene is coming back in a week speech and told him he better work extra hard this week if he wants to break out of there ;)

9/18 No Flu

This picture cant really do justice to the sky today but it was blue early and stayed that way all day.  Perfect temperature - no wind.  Buck and I had fun this morning and I felt guilty leaving him so I gave a nod to the parking faries and we both drove to Little Italy to visit an italian pastry shop I read about.  They have a patent on a cake....BUT I was really going for a ricotta with orange zest stuffed thing...sounded yummy.  Why didnt I get a slice of the patent cake?  Hes becoming quite the city dog walking closer in more populated places. 

The parking faerie demands patience but always appeases.  Went straight from there to Richard.

Buck is panting his way up the elevator and into Richards room.  It takes about 5 seconds of it and he opens his eyes and says BUCK!  Are you hungry?  No I had breakfast.  Its about half an hour to noon.  I have a couple pieces of pizza by the slice and the pastries.  I asked if he wanted to get up and do some exercise, and he wants to go to the roof. 


Is is for the most part tremor free today.   He didnt like or want the pizza- fed it to buck.  Didn't want a pastry but I think hes addicted to Orange Crush.  We sat there for quite a while.  I was sort of getting ambushed by people with Buck and this super old guy leaning half way out his chair and drooling out that side of his mouth asks about him then slowly maneuvers his electric wheelchair around all the obstacles on the roof and ends up by my right side.  Im being polite engaging with him as he speaks and try to get Buck to say hello.  Hes from Fort Worth originally.   Talked about hurricanes blah blah.  Then he asks me if I'm married...and color me stupid for saying no cause this man spent the next 10 minutes rattling off every inappropriate dirty joke he had learned in his 90 years and giving me the creeps. o.O

I escape to the indoors with Richard and we try keyboarding but the computer is sort of messed up and the mouse doesnt work well....messed with some instruments and headed back to 5th floor rec room.  Hes wheeling himself but Im assisting with verbal cues on holding one wheel and turning the other one way or the other to turn.  He gets it and does it both ways and is getting around pretty well.  So we're sort of mixing him wheeling me pushing depending on what he has in his hands.  His coordination and knowledge retention regarding maneuvering the chair has increased for sure...as well as his ability to get his left on the wheel and use it.

We go to the rec room and get a set of bike pedals and he peddled on them for a couple of minutes. Some how the creepy 90 yr old finds us in the middle. 

He gets tired easy and we didnt want to do too much without being monitored so back to the hobbit hole.  He was glad to have the rest of the day to himself.

9/17 the awful nurse is back

I could have slept until noon if Buck didn't exist.  Slept so well didn't want to stop.   We did a quick walk and I unloaded the dishwasher from my short rib soiree and ran out of here.

Stopped at the Japanese place on my way to him and got him a California roll, some grilled meat and a few pieces of fresh salmon sushi and chatted with Carolyn while I waited.  then stopped at another place and got 2 thai teas for us to drink.  He loved it all.  They packaged the sushi with thin lemon wedges between which gave it a really fresh mouth.  He ate everything but a piece of salmon and a few pieces of the beef.  

His table looked like he had been sleeping since yesterday as his aloe that you see him in the video from yesterday is still there about half drunk - ie not touched since I left....and his Orange crush from Shari is still there.  I retired it to the trash.

Bella came in with a very long email from his Servas friend, Mary Jane and I read that to him.  He says thats nice...will you share that with everyone?   Typical.  I say no...that was her private communication to you not to everyone ;)  I'll blog about it if you want me to, he says but thats an article she wrote.  Essentially Mary Jane is explaining an article written for Servas where they highlighted him and all the wonderful things hes done for Servas, and Servas international and highlighted it with a picture I provided to her - his current Facebook profile pic that he took when he was with Joe earlier in the year....but its not the actual article itself.  Mary Jane, if you are reading this blog, could you forward me a copy of the newsletter to bring to him? 

We sat and talked for a while.  No therapy today.  He says his hallucinations are much better after getting the dose of ropinerole reduced.  He seems more mentally with it to me as well.  He says he coughed all night - he has a tickle in his throat then he sneezes.  Oh god....hes getting a cold.  Im in super action mode run to the nurses station Bella is there I say hes coming down with a cold.  She says okay you need to give a report to his nurse so I stand and wait.  Bella says she'll be few minutes - I ask her just to send her in to the room then please.

So we sit and talk some more.  This floor is not that big what is taking so long.  Richard hit your nurse button.  I see it lit and I can HEAR the thing pinging at the nurses station, and am sitting on the edge of his bed facing the door watching scrub clad person after person walk by without even a glance in our direction.  Twice Richard says loudly to a random scrub clad person HELLO! as they are walking by...nothing.  TWENTY FREAKING MINUTES LATER a younger person - not the nurse, says did you need something?  I stood up and said yeah...someone to respond faster than 20 minutes when he uses his nurse call button.  Had their been an emergency and he was in here choking or fallen he'd be dead.  Im floored, and especially pissed because that whole falling episode he had in week one he said the same thing - I press it and no one comes so I have to get up on my own.  They say that's not acceptable, use your button blah blah...HONESTLY! 

So now Im heading downstairs to go find the management.  Tell him Ill be back in a bit.  I ask the front desk person for the person in charge today - someone in upper echelon management.  She scans papers in front of her and says its Bella.  I say Bella Angert?  Yes shes head of the nurses....okay?  She calls and Bella is on her way..appears with a heavy book in her arms asking whats wrong I asked for some closed doors so I can scream.

Honestly if this is the way it is every single person in that facility is in danger.  I understand people are busy, but there are dozens of people and ignoring and not responding is not an option for an entire team of floor staff.  This is stop drop and roll when you hear a buzzer isnt it?  Should be.  Anyway - she gets it.  Apologizes which is not really what Im looking for.  She gets a call from the same floor, and we head up together.

the awful nurse is heading towards me saying she checked his vitals and listened to his lungs and they are clear.  I explain so are everyone elses when they are coming down with a cold.  He coughed all night, and hes sneezing.  Hes coming down with a cold.  All I wanted was for them to give him an antihistamine.  She says did he drink that?  and pointed to the aloe water.  I said maybe he had some that is from yesterday.  Hes on a thickened liquid diet she says.  Like deviating from that and eating sushi is the cause of coughing and sneezing....these people are food nazis.  She says I gave him this - picks up a mini milk carton that is like a nutrition shake - which I didn't give him on purpose earlier because its number 2 ingredient is maltodexterin, and number three is soy.  Fine poison ingested, but back to the point, hes feeling congested, and sneezing.  Again she says lungs all clear....  Okay so we have to wait until hes full blown to do anything...I see.  I hate this woman.  Who does that?  Everyone I know who feels something coming on is ramming vitamin c down their throat, drinking tea, swallowing garlic, or whatever their normal fight it off routine is.... goodbye evil nurse.

Richard Ill be back close to dinner and Ill get you some lozenges or something.

Buck is a solid rock of muscle right now, and LOVES to crawl the streets so I'm taking him down the road with me lately when I go shopping or whatever and tie him up outside the store.  Then let him take me where he wants to go....sometimes its to duboce sometimes its to Alamo Square...sometimes he just literally wants to crawl over to pierce and pee he way back to Oak.  Easy way for me to walk - I just follow him where he turns..HAHA!  So we walk to Walgreens and I decide on Zinc lozenges, and Airborne for the vitamins because there is no threat of drug interactions and as Im standing there it hits me that he just had that stupid Flu shot!  That's what it is!  hes just got the normal after effects of that.... /sigh

So I head back after 4.  Got off the bus early and winded my way there on foot looking for food on the way and stop at a place called sliders and got him a grilled Ham and cheese with tomato and a mint milkshake.  He wakes up easliy for me and sits upright.   Mentions hes supposed to do that for at least 15 minutes a day.  Eats his sandwich well...the fries are kind of soggy so they are Buck food.  Loved the shake and drank most of that.  We did some of his vocal stuff.

Brought him a letter from another Servas friend, Edith, which he loved reading.  She was talking about her travel adventures across Europe she just returned from...Mary Jane was with her for part of it.  It was a good read and written like you were with her.  He enjoyed it.  She included a self addressed stamped return envelope with a sticky note saying things I want/need so he could write anything down and mail it to her like a wishlist.  the only thing he wants is travel reports - which I think is the newsletter.  When Im done here Im going to go find her email on his PC and let her know.

He got up and went to the bathroom.  When he came back out his CNA - Ben - helped him get back in bed.  Richard is all janked up with his robe around his neck and sitting crazy in bed because he flopped.   Ben says grab the headboard and pull yourself up and Richard did it like he was HeMan.  He wanted Ben to be sure to put his bathroom venture in his charts so he could get the points for pooping LOL!

We are not taking the day off tomorrow like last Sunday.  I told him since he got such good rest today we'd try to do some exercise tomorrow so I'll spend the afternoon with him but give him the rest of the day and evening to sleep.

i left him his lozenges, but not the airborne as he couldn't drink it he was so full.  Everyone say a silent prayer to the universe that the flu doesn't set in so he can make good use of his time remaining with more therapy, and less sleeping/sneezing/groaning.

9/15 9/16

I didnt post yesterday because I didn't see Richard yesterday.  Shari came in from Berkley and brought him a couple of California rolls and they had a nice visit.  Since I had the morning off i made an appointment at an Aveda salon down the road for a cut and color.  My hair is completely out of control in this weather.  Its humid, its windy, and even if I DO get my hair under control I end up sweating when the weather changes and up in goes in curls again.  Its making me crazy.


Even though I got their master stylist, Im not super happy with the results....I am however glad to have some Aveda product so I can sniff myself all day.

VA calls me on the way to let me know an appointment has been scheduled and to call her / the travel department towards the end of next week to arrange free travel.

Tunnell calls me towards the end with a bizzarre report that his weight was 141 when we weighed in at VA at 149 yesterday

And Shari called me in the middle and gave a generally positive report.  She sees improvement as well.  On her way out he tells her to call me to tell me not to come.  Normally Id ignore that, but as I walked home I figured he probably had an extended visit. I counted the calories he just had which were near 600 before the soda, knew he wouldn't eat for me in a couple hours so I came back for buck took a walk then started a food search for the citys best short ribs.  Eventually gave up and went down to Safeway and spent the rest of the afternoon/eve making my own.

So this afternoon thats what I went over with...short ribs in a red sauce over gnocchi.  He loved it.

I ran up to the therapy room to see what his day was like and talked with his physical therapist.  They did stairs today already.  Inquired about speech and he came down to 5 with me to find her.   She had about 20minutes before she could get to me, so I cursed myself and sat in his wheelchair and watched him sleep while I waited for her.

We walked through all his vocal stuff.  Talked a lot about his clearing his throat often which is what you'll see below. Hes eating some toffee and chocolate cookies. He READ his exercises off the paper.  So I would presume his vision is coming around.  Last week no way...but then again wait until tomorrow he probably wont be able to.

Shes giving me the guilt about bringing in food and drink while in the same breathe talking about stepping up his diet to normal.  He has an upcoming VA appointment for a swallowing scope as well as his botox injections and a Parkinson's med review / adjustments.  I pursed my lips and shook my head.  He was the exact same way prior to the stroke, Ive confirmed that- his long time speech therapist told this speech therapist that as well....really I don't feel guilty but more frustration and side stepping thought reinforcement regarding his food.   I just want him to get calories and nutrients in his body for fuel.

I'm pretty sure this is an instructional institution as his occupational therapist has moved on.  He gets a new one tomorrow.  He wants to work on his keyboarding.  So tomorrow for the weekend we'll do a little bit of that on a the floor PC and his vocal exercises.

9/14 trip to the VA PCP

Okay it took me 20 minutes to find a parking spot at the VA.  This campus is HUGE but I'm circling and going up and down the parking garage for FOREVER before I find a couple walking to their car.

Now I'm in a panic because its 10 minutes to his appointment.  I'm sure hes here already but I don't know where.  I stop in the first building I find and they direct me to a different building.  BINGO!  Go to the next floor up.  I burst out of the elevator and ask the closest person - wrong way turn about and walk the other way and I hear HEY!  Turn and there he is on his way to the potty.  Whew.  He could care less...lol.

We sat in the waiting area and exchanged stories.  I cut his finger nails.  They called him in maybe 5 minutes late.  First you go to a nurse to take vitals.  Took his weight and he got up like a normal person with purpose - hes gained 5 lbs :D  Took his blood pressure after he sat back down and of course its low because - well he just stood up.  I explain, they ask if he wants a flu shot I requested we wait until after we speak to the doctor.  On to Dr Avins...

Love this man.  This is the first Dr we have seen that knows him, and he obviously cares for him.  He had reviewed meds and confirmed everything is okay.  Interstingly Richard had a pack of papers from Tunnel which I rifled through and it is essentially his intake orders from VA to Tunnell, but lists all his meds.  I look for the Ropinerole, which he was concerned he was not getting and find it.  It says 2 tabs twice a day but if hallucinations get worse drop to 1 twice a day.  So hes getting it but I think needs to be dropped.  I took care of that later in the afternoon at Tunnell with Dr Avins' blessings.

His most recent (I think as I have not verified) was that he was out of bed at night and fell, and some gorgeous black man from the Ivory Coast named 'Electricity' who was a volunteer helped him.  He has a bed alarm that sounds if he gets up, and well the name is hilarious.  I start laughing about the name and he says I know I kept wondering - did they get the bills mixed up?  the day he told me I asked his social worker and he said no he didn't know anything about that,but I keep forgetting to ask a nurse who actually has his records to look.  I think this is more confusion of dream and reality, but he definitely thought he saw an aloe leaf...again Im giving him alow water which he loves so its connected to reality but twisted.

Anyway.......  Dr Avins says he is much better than he expected.  Asked what his personal concerns were and Richard reported his speech - forming the words and finding the words, and lethargy - no matter  how much he sleeps he wants to sleep some more.  That's also a big portion of why wants no visitors because they always wake him up...  Dr Avins was expecting to see more cognitive issues and was glad to not see that.  He noted the mechanical function issues were a direct result of the bleed.  Richard has to steady his left hand to get to the target.

He asks about how many steps he could take before tiring and Richard says 50 or so.  Dr says that is more than prior to the bleed?  Richard confirms.  This is news to me and an unexpected triumph.

Dr reinforced the importance of nutrition and fluids.  When I returned to him later in the afternoon he said he was downing his thickened water in one fell swoop, and there was an empty cup on his table to prove it.  He asked for an aloe water on the way out of the hospital and that empty bottle was there as well.

Really overall a great appointment.  We're set up for endoscopy on his swallowing and pushing up the neurology dept appointment to check his meds and get his botox shot.  We got a flu shot on the way out.

Of interesting note he is directed to not take ANY aspirin or other blood thinners, and he referred to me as his Texas Tiger in conversation LOL!

Dr Avins also referred us to the head nurse who will arrange free transportation for us next time.

So he left, an I left, and my GPS had me routing THROUGH Golden Gate Park on the way home.  Buck was howling in the back of the truck at the smells so I pulled over and we walked a couple fields so he could get his dog on.

I wanted to bring Richard a good fresh burger, but didn't want to get there an have him say he'd save it for later so I scouted a nearby place and went straight to him.  Hes.....sleeping.  Hes exhausted from his travels.  He wants to stay sleeping, so I let him.  I told him Shari is going to come see him tomorrow.  This was like a 2.5 hr venture on the bus there and back for naught, but I thought he was really on today and Im sure that level of activity is the most hes had in a while.

On my bus ride back a man that looks just like Jerry Garcia gets on and his entire rear is covered in crap - and I mean this literally.  Wet, fresh and stinky crap and to my horror he moseys along and sits on a bench.  All I can think (besides someone spray some perfume) is OMG I ride this bus every day please dont let me ever sit in someone's slosh they have left behind.

The bus driver evacuated the bus AT MY STOP...and everyone got on the next one which was less than a minute behind.

On a happy note I got 5 steps towards the house to realize the holy grail parking space is open and ran to get my truck on the corner and move it to the holy land.  I passed Jerry Garcia and his stinky trousers walking the sidewalk along the way....

9/13 no IV

He is off the IV for now...I wonder if also the appetite stimulant because he didn't eat much with me today.  Got there near 11am with Buck and a croissant egg sausage cheese and tomato sandwich, an old fashioned donut, and a cup of coffee.  He wasn't interested in anything but had a few sips of coffee...said leave it Ill have it for lunch, but when I returned later it was still there - but so was a lot of other stuff...a half eaten piece of chocolate cake, a bag of baked goods from Mary Jane, maybe he ate his real lunch and was snacking on other stuff.  I said hey you didn't eat this he said I know I'm saving it for the middle of the night.

Today is street cleaning day aka move your car day...we drove in the morning, expecting to leave him and head to Ft Funstun for a walk.  We mostly talked.  Buck laid in bed with him. and I sandwiched Buck in on the side of the bed.  The doctor came in.  Felt like he was completely out of touch saying that he wasn't eating.  Richard was complaining to him that the nurses are still giving him his time released meds in a liquid solution - like applesauce or whatever, and he wants to take it just like a normal medication, not in anything liquid so it doesn't start its time release properties prematurely.  The Dr seemed to not be concerned.  I tried to rephrase it for Richard so the Dr understood clearly the issue or potential issue.  Richard is also concerned he is not getting another medication that is a companion drug to this time release.  The Doctor says hes getting it - it might look different.  Im still not sure but.....

We have an apt with his PCP at VA tomorrow at 11am.  When I got back after seeing him this morning I tried to email the PCP to get Richards charts from Tunnell so I could get him to advocate for Richard on his meds.  It bounced at the address Richard had in his computer.  So I googled him and left a message at his Kaiser work number and email.  Unsure if it made it to him or not, but proactive or reactive I'll be there tomorrow and I can say it again.

He has to pay $75 for round trip transportation to that appointment...

Funstun got ditched for work.   I packed a watermelon aloe water, picked up some food and a fruit tart and headed back up after 3p.  He was awake.  His space was crammed with stuff so I started picking up for him.  I noticed a brown paper bag that looked like it was from the outside and he said that Mary Jane had dropped it off with some nice flowers that made his table cheery.  Almost as soon as I sat down a handsome young physical therapist named Matt came in to work with him.  Gina, his occupational therapist came at the same time to check on him and let him know shed be back in 30min.  Richard sat up Matt took BP.  Its high 155/something.  He asks him to stand and it plummets almost in half.  Has him just stand there and march in place and takes it again its back to close to normal.  Richard reported even though it was low, he was not feeling any dizziness.  They walked to the end of the hall and back using a walker to steady himself.  He did not put a waist band on him to grab him, and richard was walking quite well.  Not shuffling his feet as much and only once did I see him visually lean over to the right on the walker like he was off balance. 

Of course I left my stupid phone in the car and was cursing myself for not having it for video, but I also had a couple of email messages I had received that I needed to relay to him, so Buck and I ran back down to get that and his pastry I had also left ...

When I come back hes all tucked into bed!  I was expecting a little more than that o.O.  Since he had so much food already I did not leave what I had for him.  I did leave the aloe water which he had started and liked.

The occupational therapist was going to do computer work with him today.  He didn't want me to stay for it.  I had already been there a little over an hour.  i bided my time by reading the email message from Bill and showing him some pictures and video on my phone.  no luck, so we headed out.  Streets are packed so I had to take a loading zone spot and be sure to move my car early in the morning.  I have to go to VA anyway, so we'll just get up early and go do something on the way.

He was complaining of his vision today.  very blurry.

9/12 in the sun

Nice day today.  Carried my jacket but didn't need it.  Richard called me in the morning but we were on our walk and I did not bring my phone.  He is still concerned about Buck.  For the record, Buck is fine and galloping along.   He left me information about an emergency vet that was close by in case I needed to use it.

Ordered a small pizza from California street and headed out for the bus.  I'm acquainted well enough to wing it but Im still attached to my #22 and #3/#2 buses.  I got off at Van Ness and walked up to california and over to the pizza place.  He had pizza once already but told me he wished it was a warm and crunchy crust.  That was the purpose of picking up on the way.

When I stepped out of the elevator I could see he was just getting up and sitting on the edge of his bed.  He said I was JUST thinking about you.  He looked at the box and said that's California Street pizza.  How the hell do you know that?  He said I recognize the box.  This is a completely non descript box - white with a red thing on top.  Anyway... He had a piece said mmmmmm, I said lets go to the roof and sit in the sun and I'll read to you while you eat.  His wheelchair is missing, but his phone charger has miraculously reappeared and his phone is plugged in.  He handed me an email to read to him from Dona (Somerville) while they looked for a chair for him to use.


We eventually got to the roof, pizza in lap.  This chair did not have foot rests so he used his own feet to scuttle along with me re-directing him as needed.  As we come out of his room all the CNAs and nurses are saying oooo Mr Piro is up!  Look he has pizza!  And hes is crossing his arms over the box  to others lol!!   On a completely unrelated note, he asks every single person/nurse/cna/therapist we meet where they are from so he can know something about them..  We sat in the middle of the roof in straight sun.   I brought his NPR hat and sunglasses which he donned.  Pizza is a thin crust but quite tasty chicken alfredo albeit a little cheese oily.  He asked for a soda from the machine.

He ate and I read him the print outs on Astaxanthin, and CoQ10.  He loved hearing about both and asked me to please get that information to James and Susan (they are both good for neurodegenerative disease) and to Arlene as well.  I cant really reach Arlene communication wise except for text, and Im surely not texting her information about that while shes vacationing in France.  I also don't have Uncle James' email on my laptop.  For all the setting up I did on this thing I completely forgot to transfer my email stuff...And my damn ecig stuff.   If anyone blood related to me can please pass that along or point them to this blog I would appreciate it. I dont know if they visit this.

You can use my gmail to access:  andrealpiro@gmail.com

Good explanation of CoQ10

Exhaustive article on Astaxanthin


Also got a get well card from some Canadian friends at the house here that I brought up and read.

While he really appreciates hearing from everyone he is still adamantly against visitors of any sort.  I told him that dad called him back yesterday and he didn't answer....probably because he was on the line with me.  He said I hope they all know I don't answer the phone.  So email is still probably the best way to reach him.  You can find the email on the right side of this blog.

And speaking of email....when we got back downstairs the case worker handed us an email from Dad.  He did not have Mary's cell in his phone, which was what Dad was emailing about, so I put it in and walked him through the buttons on his phone again and how to get to the phonebook and select a person to call.  He wanted to sleep.  But he needed to pee and its dark.  His institutional lunch was on the table I pulled the yogurt off for him while he was jokingly calling for Buck to come clean the plate for him.  Points points points. He always gets a special request half of an egg salad sandwich we he saves for later and so I pulled that off as well and realized there was strawberry icecream.   He had that in his hand when I left.

His blood pressure was very high this morning, but when they took it on our way to the roof it was 134/89 - not bad.

He has already done a lot of his chanting saying he serenaded the entire floor.  She had left him a chore list to work on in her absence. Which was on his table in a waterproof sleeve.

He is much better in person in his volume, annunciation and air movement in his lungs when he speaks than on the phone.  I asked about his strength level and he said he feels stronger.  He said the PTs were going to kick his ass today with core crunches. They make him lay on his back then lift his torso just so he can see his toes then slowly go back down.  That core strength will help with his balance I think?  He thinks its close to torture but knows he has to do it...for points of course.


He report his vision is mostly blurry, but sometimes double and less often..he is certainly able to discern someones name on a small little clamshell phone...and he had a wonderful full on shower this morning and it felt great to be under running water.  Hes going to need a hair cut here pretty soon.

Awesome picture of the day :)

9/11 Was an inside job ;)

Today is a free day. He knew he had the day off from everything today.  I called at noon while cleaning up his computer to ask if he was still okay with no visitors today and he said 'oh yes, I'm having the best long sleep'.  Said he ate his entire breakfast, and told the nurses station to please not let anyone pass.  I shared with him my morning, which consisted of an attempted walk to the park in the am and suddenly Buck started to limp on his front right paw.  When he would put it down he was knuckling meaning he was trying to walk with his toes curled under an on top of his knuckles.  This is immediate freak out for me and I sit in the middle of the San Francisco sidewalk for 10 minutes less than a block from the park, rubbing, pinching, pressing, flexing stretching his feet.

The most crazy looking miniature husky passed us while we were sitting there.  I didn't even know such a thing existed, I said OMG is that a miniature wolf?  It was so WEIRD looking - piercing ice blue eyes popping out like a chihuahua in this tiny body with a fox shaped head, and a fluffy curling husky tail.  So odd, but in love with Buck like everyone else in the world.

Opted for no park to avoid him from running and hes walking normal on and off back towards the house.  We walked an extra couple of blocks to give him some time to get his business done...  Settled on aspirin and an antibacterial wash for his foot, with a fresh whole foods lunch and hydrogen peroxide honey water.   He ate.  He drank. He slept.

All the while I'm cleaning Richards computer up which actually has decent hardware, but takes about 5 minutes to respond to anything and it was towards the end of that that I called him.  I sort of miss going by to visit today.  He sounded good, but slushy mouthed.  He was connected.

Took Buck out again near 3:30p for a walk down to Haight to get more Aloe water.  He was walking fine...maybe just a sprain?  Richard called again while I was in the store.  Said he tried to call Dad at home and no one answered.  Asked about Buck and if he was feeling better so hes still connected.  We talked again about visitors and I asked him to call a few people who were expressing interest in visiting to discuss and he said okay I'll do that now.  He was obviously rested and willing to talk to people a bit.


I thought since its day off from him Id share my favorite things in his apartment.

The ivy from Wagner's grave

He was close to my age

Best Picture ever!

There are sirens outside and I keep hearing a lady on a loud speaker saying THIS IS NOT AN EMERGENCY.  THE ROADWAY WILL REOPEN TO VEHICULAR TRAFFIC SHORTLY.  I have no idea what thats about.  Maybe they are doing a 911 thing.

Last night I caught up my episodes of Weeds, and tonight I'm watching Water for Elephants...only because Richard keeps saying he dreaming about going to a big elephant meeting, and mentioned this movie in reference to the statement while we were talking about it.  Hes read the book but not seen the movie.  I'll see the movie and not have read the book ;)