Nothing happened today put me made plans. Dogs are going to school while the house is being refurbished, and a van is being rented to take me to the wedding and my appointments. I fed the dogs biscuit halves and I ate more birthday ice cream cake. I discovered I have a frozen right shoulder and that's why I have shoulder pain. The pain will last 9 months then stop. I doubt I have 9 months. I'm feeling pretty lousy, especially with this shoulder.
Tuesday Sept 2
This morning was the first day of school and Amanda took my picture with the last two still in school and put it on Facebook.. I gave the dogs biscuits and now they come in my room for them. I had a hard time on the toilet but Jaq went to CVS and bought Fleet which Amanda administered and now I'm fixed. I watched Netflix the rest of the time and tomorrow I am going to get an ALS sitter while the dogs go get shots and that sitter is Jaq's mother. Jaq's spine is really painful and he doesn't want mine. Sam and Ed, please send me an email. I have a new computer and the old one died suddenly.
Wednesday Sept 3
My sitter Jan only came in my room to say hello and goodbye my ALS sitter Jan arrived and the dogs and Abby the female dog came home with a diet and Prozac. I felt lousy all day between my head and throat and drooling and I asked Amanda to call Hospice. She said to hang until the 12th and see if things improved. I have a few episodes to go then on to Criminal Minds. I had no naps and I'm very tired.
Thursday Sept 4
It rained most of the afternoon but cleared for Jaq's picture shoot of the wedding. I stayed inside all day mostly watching Netflix. I did pick the color green for my own wheelchair when they called. I have no muscle in my lower leg but have some in my upper leg. Jaq has a bad back and Amanda will if she keeps hauling me around. I believe it's time to call Hospice. I feel so totally useless and don't want to ruin any body's health. All I can do is watch Netflix, get fed, have Amanda help me potty, pet the fat dog, do gas prices, write this blog, any choose colors. I can't even sleep comfortably. My main goal is to get my fingers straight so maybe I can get a manicure. I felt pretty good today but felt poorly after Amanda fed me and gave me my evening's medicine. I watched Zodiac and a movie about Russia's prisons and started on Criminal Minds. My new ramped van comes home tomorrow so I can go to appointments and of coarse the wedding.
Friday, Sept 5
Today Jaq and his mother went to get the used van. On the way home, however it broke down on the way home. . Jaq drove it back to dealer who said it looked like a broken water pump (which tells me the dealer didn't test drive it) Jaq explained he had to drive a lift van and suggested they give him one free. The dealer replied half price was the best he could do so Jaq paid half price and drove that van home. So, we will have a nice van for the wedding tomorrow. I posted about my sudden toes problem, and like my throat problem many PALS read it but none answered. So apparently I have two problems that are unrelated to ALS. All the toes on my right foot except the big toe decided to make me walk with toenails down on the floor. Only MS patients have toes that curl under so do I have MS on top of ALS? Unfortunately I'll have to wait until the 11th to find out. Monday is Botox and G-tube. Tuesday the men are coming to refurbish the house. I spent today trying to fix my email, and trying to make Yahoo not my start page and picking out shoes to go with my new dress through emailed pictures. I did get down a half glass of Pepsi, other than that all my meals were provided through my tube, usually by Jaq.
Saturday, Sept 6
I got a shower bright and early and Amanda plucked my eyebrows. I watched Criminal Minds until it was time to get ready for the wedding. Amanda got my long dress and shoes on, and Sunny did my hair and makeup. We made it to the wedding late and ended up sitting on a bench with the river behind us. My youngest brother broke of out of line to give me kiss. During the wedding I couldn't stop from crying to think this marriage was the only extension of the Chamberlin line. We left there to attend the reception and found a parking garage where we parked on the highest level in order to get room to extend my wheelchair ramp. Jaq had to call to find the building, and we preceded to find it. It consisted of a bunch of unfamiliar noisy adults and children until my brother came by and I got a picture of him and me. Amanda found a handicap bathroom and tube fed me there. My brother's barefooted wife came by and tried to fit her high on me and introduced her brother to us. Finally it was time for dinner and we found table 15 right by the stage and I sat between Amanda and Jaq and opposite my brother's wife brother. I ate ice cubes and salad dressing. We listened to people talk and I got a picture of the groom's sister Britain and me. She is on her way to Boston to get her graduate degree. We left there and got back in the van and drove home. I was so tired I went straight to bed. Jaq went to River Falls. I wore a diaper to bed so I could let others sleep. I wet it three times during the early morning hours.
Sunday Sept 7
Amanda did laundry and then stayed in my room most of the day. Since it has become so difficult to get into the bathroom I am on diapers full time. I watched Criminal Minds most of the day and since it's one of Amanda's favorite series she watched with me. I posted to the ALS group about feeling sick all the time and got many replies that they did not often feel sick. They advised me to talk to my ALS doctor about it. In response to their comments and because I am having a procedure to modify my feeding tube I decided not to have evening meds, only food and water. Tonight Amanda got mad at me
Monday Sept 8
Today we packed for an 8 hour say at a clinic. The appointment was assigned before Jack starting classes on Monday', so dropped us off, attended class and came back for us at 5. We had a long waited prior the 30 min surgery and a longer one after and everything went wrong the minute we left that surgery room. My wheelchair would only go in circles, so Amanda drove it from the rear controls into a conference room where she fed me by my new tube. Then the wheelchair wouldn't work at all. Not even the horn would work. So we debated if we should leave that room, since Amanda had called the wheelchair people where we were and that the controls for the chair were not working. She then hand pushed that chair into the lobby and we waited for the repair man to come to fix the controls. We watched television. Finally Amanda decided to hand push the chair the many students down to the road that was filled with Police. Amanda learned later that there had been a gas leak. We returned the way we came, her still pushing the chair. We came in and I asked Amanda to dump some water down my tube. Then we parked by the aquarium. Suddenly, about 4 pm, the darn controls worked perfectly. We decided to go back out, and saw the Police were still there, then we found Charlie Brown and Lucy and Amanda took my picture with them. We were standing outside when Jaq picked us up and drove home flawlessly while talking about school, how he can do that amazes me. I discovered it was not the medicine that was making me sick, it's the the food. So tonight Amanda is giving me half a can through my new tube.
Tuesday Sept 9
Today the general contractor had two contractors come to the house and give bids on the cost to refurbish it. We all agreed we liked the second contractor especially since he gave an demonstration at an ALS meeting we had attended. Secondly, because they appear to be nice people. I decided to go back on medication since it's obviously the food that is my head foggy and my stomach upset. Apparently I have a cold and when Amanda called the ALS they said to reschedule if I had cold. At the ALS forum they said not to wait, because it could easily turn into pneumonia. Amanda and I both agreed that we've never done this before, so everything is an unknown. I took nighttime cold medication because I couldn't nap because of the coughing and I couldn't risk that happening all night.
Thursday Sept 10
Today I felt so much like death was taking command I asked Amanda to bring in Hospice. They are starting Saturday. My cold is getting better with medication. I weighed in at 134 pounds but it was a harrowing experience since I had a slippery moisture catcher on my landing spot. It appears my cold is good enough not to be rescheduled by the ALS clinic, and we have a 9 am appointment there tomorrow. Jaq doesn't have school and Amanda is taking the day off from work again. My wheelchair wouldn't respond again for four hours so I laid in bed where I could adjust the controls. I slept from about 9 to noon. Tomorrow they are meeting us at the hospital with a replacement wheelchair. I don't know why they didn't do that the last we were in Minneapolis and the wheelchair broke down. I am on season 2 of Criminal Minds. I don't how much longer I can keep typing since am losing strength in my left hand and my right hand is pretty much useless.
Thursday Sept 11
Today was probably my last every 3rd month ALS clinic appointment. We arrived in our nice new van in plenty of time. My breathing test came first, and though we didn't get a number, they say it was lower. My cold is better, in fact, I didn't cough uncontrollably once. I signed a paper for accepting genetic testing to see if I carried a gene for ALS. If I have the gene then my children have a 50% chance of developing ALS themselves. So if I have the gene, Amanda also wants the test. MDA will cover the cost of my test, but not Amanda's test. Amanda pushed for a survivor ballpark estimate, but the doctor could only say six months to a year. He also said that if I had visitors, they should come in 2014. .Next came my botox injections, and then my blood test. The man came to switch wheelchairs, but has to use the old controller arm from my old wheelchair because the new wheelchair only came with a right handed controller arm. When one person came and offered a hoyer lift we all jumped in agreement. They brought one in and lifted Amanda. I am also on the list for a speaking machine a board that assists movement and an an in room commode so I can be lifted up and onto it. Does the commode come with liners? Tonight Jaq had to carry me to my chair and he also stretched my fingers and range of motion exercises on my frozen shoulder. I have an appointment for the frozen shoulder tomorrow, after the bank.
Friday Sept 12
Today went with Jaq to the bank in St Paul to get papers notarized and then stayed in the car and Amanda took me to her nurse practitioner who referred me to an ortho specialist to see if he could do something therapy alone could not do about my frozen shoulder. I came home, much easier than when I left, had lunch and almost fell asleep. I got answers and posted comments on my ALS forum and then Jaq performed range of motion on my arm and fingers. When I started coughing and could not get the bad stuff out, I asked Amanda to bring my aspirator out of storage and she did. I am going to bed early tonight to watch Netflix because Amanda and Jaq are going out tonight and nobody else knows the routine of getting me to bed.
Satuday Sept 13
The hospice nurse came at one and stayed until 3:30 and literally took over my life. No physical or occupational therapy, no ALS symptom reliever pill but I do get a person to massage me and I do get a volunteer to take on walks. Medication she ordered arrived soon after she left. Amanda and celebrated with a glass of wine for her and a syringe of wine for my tube. Jaq went to Wendy's later to pick up dinner and brought me back a child's cup of Frosty. I could eat it as long as I leaned back in my wheelchair to get it in my throat instead of leaking out my lips. Going to bed has become a dirty word since once I get parked in bed it's impossible to change positions. Last night I worked my way onto my stomach, with both arms on the same side and could not ring my bell so I made as much noise as I could and a rescuer saved me. Regardless of Hospice Jaq continues working on my frozen shoulder and on stretching out out my curved fingers.
Sunday Sept 14
Today is Sunday so Jaq went to Dave's house to watch football after losing his homework and pen in the lake. I used Lorazapam to get to sleep last night after taking morphine which caused itching so I Benydryl to stop the itching. Somehow Lorazapam got in my morning's medicine so I was in and out of sleep all day. Jaq worked on my arm and hand and Amanda slept in my bed nearly all day. My new aspirator arrived around 4:30 but hasn't been employed yet. Johny came but forgot the sata cable that will make my old drive Drive E. He will here again on the 21st.
Monday Sept 15
The Hospice nurse Amanda came today, young, slight apparently Chinese and took my oxygen usage, took my blood pressure, listened to my heart and breathing, She then called Leslie, my ALS doctor's nurse and requested my bipac setting numbers. I napped from one pm to almost 4 pm and then started watching Criminal Minds. Morphine is keeping my frozen shoulder pain free. I ordered a clock on Amazon and paid that bill. I found two $50 Service Master certificates and presented to Amanda. Now that I am taking two blood pressure pills my blood pressure was 130 over 88. At 8 pm the outside temp is 57
Tuesday Sept 16
Amanda fed me all three meals today. I found my glasses made a good head scratcher and I can't stay of diapers long. I had Amanda take my clothes off and I was completely naked for about half an hour. Slowly I began dressing; first a diaper and then a thin robe. I plan to sleep tonight in only a diaper. I watched some Criminal Minds but slept most the day. I looked up PCA duties, but neither diapers or feeding tubes were never mentioned. I believe my botox injections are working because I had to bend over in order to get saliva flowing. My food arrived today along some new syringes. When being I feel like the Pillsbury dough boy when my g-tube button is pushed back in. Amanda is a wonderful caretaker, and I wonder if any PCA can even meet her half way. For a PCA to meet my expectations he should finger talk, be an older man, be experienced, patient and strong. My blood pressure was 130/75
Wednesday Sept 17
My hoyer lift arrived today or should I say Amanda's hoyer lift, since it was save her back. I started out in a sweatshirt and went naked from the waist up until 5 pm. My new clock arrived from Amazon and Amanda it up uner and left of the monitor. Manda has her children coming tonight so since ending work has been working her tail off getting ready. I almost got a hair wash but there is too much on the back of my wheelchair to get me close enough to water. We tried the kitchen sink, the bathroom sink and the bathtub. Next is a hose in the backyard. I slept and watched Criminal Minds on and and itched. It's hard to itch the right side with only my left arm. My Hospice nurse is expected tomorrow and is bringing a Hospice Social Worker. Dave the contractor emailed Amanda and said it two weeks before the plans and 3 months before work starts. That puts us smack dab in the middle of Aaron and Melissa's and the kid's Christmas visit.
Thursday Sept 18
Amanda got me into shower, washed me, washed my hair let me brush my teeth then got me back in my wheelchair dressed me and then I did my gas prices. The Hospice nurse arrived before I completed gas prices and while she was here I felt a sudden urge to get to bed. Amanda lifted onto my bed, swooped me into position and I stayed until 5 pm. The lady delivery brought my cough assist machine but I just stayed in bed. I slept for most the day. Around 5:30 I sat, coughed, and so used cough assist machine for the first time, along with my sucking machine that sucked th mucus out my throat and into the machine. I am still getting morphine along with my breakfast, for breathing help and frozen shoulder relief and this helps me sleep better. Amanda had a happy time with children last night, it's too bad I screwed up with my non verbal voice, use of only my left arm, my coughing, diapers, and my tube feedings. Amanda did squirt some wine into my mouth
Friday Sept 19
I got up and did gas prices, Amanda got me dressed and Jaq fed me breakfast. All the rest of morning I slept in my wheelchair. About 2 pm Jaq took me for walk (the hard part is getting me and the wheelchair out the door separately) down a new path and back home (getting back in is equally as bad as getting out) and I slept again in my chair. I decided I needed Plax mouthwash because I remember sleeping with a stuffed up nose, and Plax left me with a fresh mouth every morning. Amanda and Jaq went shopping and Plax was on their shopping list. No Plax where they went. Jaq will go to Walgreen and buy some in the morning. Amanda wrote 9am for Sept 30 on my calendar and I was worried I would have to wait that long for a Personal Assistant, but she said the Sept 30 date was just to get more hours. I want a PAC that can carry me. Last count I was 134. Last blood pressure was 118/72. I should get a speaking machine soon. It took me half an hour to write this. Three months down in the middle of December getting in and won't be nearly as hard.