Today was a rainy day so I didn't anywhere but the swing on the front porch swing until it started raining again. I took frequent naps to stop the saliva and at 9 pm the sun is still is still out so I watched television in the living room with Amanda until 9 and then came to update this blog. Amanda used her lunch break to file my insurance papers and by her professional option we can expect results in 4-6 weeks. The only problem we have is the doctor wrote on his report that my symptoms began at the end of Jan. Amanda helps me dress every morning and brushes my hair and prepares all my food. I have an appointment at the ALS clinic July 3. Tomorrow is Amanda's last day of work before her holiday begins
Wednesday July 2
Amanda called and set up appointments for Widow's benefits and SSI but both are set for the end of the month. She prepared me for both the ALS clinic and the pool party by giving me a manicure, pedicure, and shaved both my legs and arm pits. I watched House MD on the big tv in the living room almost all the time Amanda was working. Melissa called to say they received a tobacco check but I have to sign it and send it back because apparently had one $900 unpaid medical bill. I understood all bills were paid within a week after she died so I wanted to see to whom the check was going and the date the bill was not sent, because I paid all that came.
Thursday July 3
I bent over the tub so Amanda could wash my hair then I got in the shower and washed the rest of me. Then Amanda dressed me in what use to be my church clothes and then she put my hair into two braids and then she fed me breakfast. We got in the car around 8 and arrived at Fairfield hospital in Minneapolis at 9. After the breathing test we sat in one room for 6.5 hours where a parade of people took turns coming it to talk to us. The Greek doctor came in second and prescribed two medications 1. for excessive laughter 2. to slow down the ALS symptoms He called them in to Target and told me I had to have an EEG and a blood test before I could take them. Target had neither of the two and we won't be able to get them until Monday. We left at 4:30 and got home at 5:30 and Jaq never even used a gps to get from one point to another. Apparently I am now on record for accepting a feeding tube but rejecting a bipack or a ventilator. After all, I need some quality of life.
Friday July 4
I fell going down the stairs on the way t to the party and I fell getting out of the pool and I fell on the stairs getting back into the house. The party was a chance to meet new people as I knew only one well, but me and my disabilities were never mentioned or discussed. The food was upstairs so Amanda chose and prepared all my food and I ate it all, with three helpings of watermelon. After we got home I watched House and went to bed hearing bang bang bang boom what seemed all night. It looks like it's time for a walker or wheelchair and ramp, and preferably a lake where I can walk out instead of climbing out
Saturday July 5
I only watched House today and took a morning nap and an afternoon nap while Amanda hand washed and dried my broken wist brace. I had cottage cheese for breakfast, cheese for lunch and fish and hash browns for dinner. After dinner I had pudding and milk. I got locked out of my St. Paul bank account and received nothing in the mail. I did get more saliva medication. Tomorrow expects to be the same ands all action starts Monday.
Sunday July 6
Today I didn't even go outside primarily because of the rain. I didn't do my gas priced until 1 pm. I ate a lot though and took vitamins twice. I watched a lot of House on Netflix. I am looking for non-ceruloplasmin bound copper because people with ALS have slowed down their ALS when taking it. I only fell once today when slid off my bed when I attempted to do my gas prices. My legs are always weaker at night so I will get my shower tomorrow morning. We have a long list of things to do tomorrow and I may end up going to St. Paul.
Monday July 7
Today Jonny came and hooked up television and added a play station and hooked up my wand turner after he bought a toggle bolt from Home Depot. While he did that I went out the swing and watched the mowers, blowers and border police with grass whips. When they moved the basement I laid in my bed with a wedge and 6 pillows and watched House until I lost that and tried a movie. But I never got to see end of the movie because Amanda and Jaq went to buy a red 4 wheeled walker Amanda found on Craig's list and switched me back to House. During that time Sunny chopped up some cheese for me to eat. Tomorrow we go to Fairview in Minneapolis one again, but this time for a care meeting of ALS people and their caretakers.
Tuesday July 8
Amanda got me up and I waited watching House while Jaq went to his cardio and Amanda worked and then we left for Minneapolis. We were one of the last people to arrive at the care meeting and I carefully looked around to if there was anybody like me. Nobody was, even after we split up with the caretakers taking a different room and the ALS group gathering at one end of the same room. Apparently Amanda and Jack had a better experience in their group as they got 3 offers for help building a ramp. I had to write my comments on a board so I didn't have that much spontaneity. All my people started before I started and those in wheelchairs could talk and those that couldn't could walk. Some people didn't like they had ALS at all. On the way home we stopped to pick up two medications from Target and my $800 perception had a copay of $1. I had sweet potatoes for dinner and I watched House and I am going to bed early because I didn't have a nap. Nothing is planned for the next two days.
Wednesday July 9
I watched House all day and we filed for my MN disability at lunch hour and I sat in the swing and talked to Amanda. Tomorrow dentist bright and early. I found a new way to position myself in bed – I crawl to my spot and then tip over. My medicine made me dizzy so I went straight to bed and am updating at 548 am
Thursday July 10
Today was another day watching House. I fell holding a glassful of Bolthouse at the end of my bed onto carpet. I had a short nap. Because I wrote last nights blog this morning I said I had a dentist appointment tomorrow when its really tomorrow morning at 8 am. So I am going to bed early so I can get a shower and breakfast before we leave. Jaq is taking me so Amanda can work. My marriage certificate arrived by Fed X so I can apply for Social Security Widow benefits. We had chicken grilled outside for dinner which I matched with cottage cheese and sweet potato.
Friday July 11
This morning I got up in the 3 am time slot and did my gas prices, had my shower, ate my breakfast and went back to bed. Jaq woke up and helped me brush my teeth then off we went to the dentist. The dental hygienist cleaned my teeth then the dentist came to see the ALS woman and tell me he could alter my bridge to prevent me from biting my cheek, but it wouldn't do any good because my cheek would navigate to fill the hole so it wouldn't do me any good. He did prescribed a mouthwash twice a day and I put in my mouth twice today, It was raining when we came back so I came in through the garage and up 6 steps backwards with Jaq at the bottom and Amanda at the top. I watched House when I wasn't eating or sleeping. My shower slide and bed rail are coming Tuesday and I get my wrist looked at Wednesday.
Saturday July 12
This morning I got up and I did my gas prices then went back to bed until Amanda ended her work. She then got me up and I had 1 doughnut and coffee for breakfast then off we went to Fantastic Sams to have my hair washed. Sine I the curbs without falling she suggested we go a store that resembles Goodwill. She bought me there a summer pajama set and a summer robe. We came home and I napped then watched a few episodes of House. It rained today – hard- about 5 minute s after we got back to the house.
Sunday July 13 (one month anniversary of breaking my wrist)
I had my early morning shower and almost fell but Amanda caught me. I watched House an intervals thorough the day. I sat in swing first with Amanda then Angie and finally Jaq. I had eggs for breakfast, tomato soup lunch and a pot pie for dinner with tapioca pudding for desert. Amanda and Angie went shopping and brought back lots of good things. Amanda keeps applying lotion so my skin stays moist
Monday July 14
Amanda gets me up and dresses me every morning, lotions my dry spots and feeds me breakfast before starting her job. On her lunch hour she handles my paperwork and makes my calls and has me sign papers with my left hand. I have something to do this month except Friday. Tomorrow my medical equipment arrives, Wednesday I am getting my arm checked and Thursday we see the local VA man named Kyle. Today I finished House and started Breaking Bad.
Tuesday July 15
I was sitting the living room watching the news when my medical supplies arrived. The man in shorts brought a bed rail, hospital table, 2 grab bars and a shower stool the lets me sit and swing my legs into the tub instead of trying to step into the bathtub. Jaq barbecued chicken outside and brought it inside to eat it. I am on Season two of Breaking Bad. Tomorrow at 3 pm I am getting my wrist checked so I used my shower chair and grab bar tonight. Closing at 66 degrees
Wednesday July 16 (Aaron's 32nd birthday)
I didn't have an Internet connection so I messed around with while Jaq went to pick up Jon and one of things I did was system restore so when Jon came and rebooted the connection there was one. While Jaq drove Jon back to St. Paul I took a nap. Soon it was time to take far away to the only ortho who had an opening. I spoke at first with a Resident and then the surgeon who said she was afraid I would die if she did surgery on a patient with 45% lung capacity. But she did sent me to therapy where a very nice therapist made me a new lighter and less bulky brace and taught me exercises. We made le long trip back home and I barely was able get into the house. Tomorrow is my day off with Hospice coming Saturday.
Thursday July 17
For a day with nothing to do we sure did a lot. At 1 we left for Stillwater for a visit with the VA man who said all submitted paperwork was okayed and ready for payout which I should expect by the end of the year, but our change of address never got posted so he did a second one. Then I came and took a short nap and then 10 people went to the buffet where I loaded up a plate with meatloaf, carrots, broccoli salad and beets and added a bowl of cottage cheese loaded with cut up peaches. We came home and conversed as a family and I left to update this blog and watch more of Breaking Bad.
Friday and Saturday, July 18 and 19
I laid in bed all day Friday watching Breaking Bad and even ate meals in my room. Once I went out in the awing with Jaq until I got the bright idea to express myself in a letter. The Hospice person is coming at 9 am to see me and if the house qualifies as is. My feeding tube is scheduled for the 28th
My mouse broke so I didn't update last night so after the Hospice nurse and social worker came Amanda went to Best Buy and bought me a new mouse. I had one question for the Hospice people – How do they Comfort Care people who have breathing problems. Answer: Morphine. The person who will assist me with death is named Amanda. Two Amanda's. I was on the swing when the Hospice people arrived and we came in and sat on the couches. Amanda had the off so didn't set her alarm and by the time I got to the edge of the bed, sat up, got my feet and walked to my walker and opened the door my bladder emptied right in the hall way. I was so ashamed. Now I have a bell to ring when I need help.
Sunday July 20
I am a few episodes short of completing Breaking Bad. I did my gas prices and got a shower. I accepted all meals in my room even the gummy bears and ice cream. Amanda massaged my broken hand and hoisted up to a sitting position after I slid down.. Tomorrow late I have a GP appointment to fix my blood pressure and constipation. My grandson came home dresses like a hippie and dirty after a day out with his friends. Amanda sat with me most of the day and evening.
Monday July 21
I finished Breaking Bad and started on Dexter but I didn't like that very well. I went for my GP appointment at 4:40 and a slender Chinese woman with a slit in her dress that let me view her underpants ordered two x-rays; one of my hand and one of my shoulder and prescribed new blood pressure medication and colace for constipation and then we came hone and ate meatloaf, green beans and stuffing which I got except for the stuffing. Tomorrow a lady is coming at 9 am to talk to us about a ramp.
Tuesday July 22
The lady came preciously at 9 and suggested I sit at the kitchen table with them. She asked a lot of questions about how I got things done from tooth brushing to finances and discovered she went to day care with Jaq. We are apparently qualified to remodel the whole house and build either a ramp or an elevator with a $40,000 grant. She left about noon so I had lunch at the table then came and watched American Horror Story. Amanda fixed me a pot pie for dinner and sat with me while I ate it then stayed to watch Netflix with me. Tomorrow at 1 get my botox injection and then I get examined for my new glasses.
Wednesday, July 23
Today we drove to Fairwiew Hospital in downtown Minneapolis for my botox injections. There we so many people who wanted to see the procedure we had to change rooms. Besides Amanda Jaq, the doctor and the resident, there were two more men and one woman. I didn't dare flinch as the resident injected botox into my face between my ear and jaw three times each side. We left there and came home and at four Amanda drove me to my eye appointment. I had a very nice, very young female doctor and as I read the eye chart Amanda translated my finger signals into words. Her examination was complete and the last test the doctor put some drops in my eyes and suggested we go look at glasses for 20 minutes. Three people decided on a pair with purple stems are wire front. The drops the doctor put in made me have yellow eyes so I was kinda scary. I had to wear sunglasses on the home because my pupils were dilated. The doctor said I had healthy eyes. We came home and had dinner and I watched the end of the American Horror story I cut short earlier. I will get my new glasses in about a week. Out at 79 degrees.
Thursday, July 24
I slept late and we left at 8 for the Social Security office in St. Paul where we mingled with approximately 75 other people, mostly foreigners, but we had a 9 am appointment. So were among the the first bunch in. We sat on metal benches until we were called to a window where I was unable to produce a picture id but that wasn't in the list they gave us to bring. Very soon afterward we hear our name called so we quickly abandoned that man and got an efficient woman. She talked out of SSI and explained that SSDI was the widow benefit and was retroactive to the date Jim died. She said if we didn't find $5,000 deposited in my bank we should call her. We went the scenic route and came back on the high traffic route and at home I finished American Horror Story. We had Subway for dinner and had meatball in a bowl and now I'm going to brush my teeth and get to bed because I didn't get much of a nap.
Friday July 24
I watched The Walking Dead all day except for the half hour the bipac man was delivering the bipac which I wanted on hand before we called Hospice in because when Hospice is called in all help items are not allowed. Two things changed my mind about the feeding tube. First Amanda wants to bring the bipac when the feeding tube is installed and second I got SSDI instead of the VA recommended SSI which all but eliminates the VA payment of $9,000 which I hoped to share with my children . I think I can survive long enough without a feeding tube or bipac to save up $9,000 to share with my children. After all, all I do is go to medical appointments and watch Netflix and eat and what kind of life is that?
Saturday July 25
I got up at 5, got dressed , had oatmeal for breakfast, watched a few episodes of Walking Dead and went right back to sleep. Men were working on the roof and Amanda was going to Target with Sunny, so I went along. We walked all over that store me pushing my red walker in front of me. After we had done most of our shopping I suggested looking in sports for balls to use to increase my broken hand strength. We bought a set of three balls specifically designed to increase hand strength. On the way out I picked up a weight and held it above my head and that's when Amanda took my picture and put it on casebook. She also took a picture of me getting botox injections and also posted that on facebook. In my defense I can I'm probably the only person who smiles when getting needles stuck in my face. When we got home I watched a few more episodes of Walking Dead until Jaq brought me his parents birth and death dates and now I'm working on his genealogy. It is only 7:20 but I'm physically and mentally exhausted. Out at 84 degrees
Sunday July 27
I didn't watch Netflix at all today. I worked on Jaq's genealogy and took a short nap then it was time to go to Ikea near the Mall of America. Firts we ate Ikea food and then we went shopping. They bought a bed and Sunny got a mirror and I got a new lamp, artificial plant, bowls and wall stickers. Then I got my hair washed at Fantastic Sam's and then we went to JC Penny where I got 2 sets of summer pajamas and Amanda got a waterproof mattress pad for their new bed. I probably won't be writing for a few days because I will be in Fairview Hospital for two days getting a feeding tube installed. I'm a bit worried about lying on my back that long because my throat closes off, and I don't know if I can tell anybody in the room that all they have to do is turn my head.