Kim picked me up today at 11:30 to take me to my noon appointment with Dr. Carder, who was my dentist 20 years ago when we lived in State College. I was very nervous because I have been grinding my teeth uncontrollably 24/7 for at least the last 6 months, and my allergies have been Terrible the past 2 weeks. My last dentist appointment was only 6 months ago, but my condition has radically changed since then.
When they took my blood pressure it was 150/102, very high!.
Because I have had a bad overbite all of my life, and ALS muscle deterioration has caused my lower jaw to recede, and I suffer from muscle spasms in my jaws, I grind my teeth uncontrollably 24/7. I have a place on each side of my upper jaw where my lower teeth have worn away upper teeth and the lower ones now make contact with my gums. I was very concerned that I would learn that I immediately needed to have some teeth pulled. I am very happy to say that I do not!
Dr. Carder gave me a very thorough exam of teeth and muscles and determined that although worn, my teeth are still sound and he believes that I would benefit from physical therapy and massage. Kim said that I looked 10 years younger and I left all smiles! We have a referral to a practice in town to start therapy and I look forward to receiving some relief from my chronic jaw and teeth pain! Hopefully I will soon be able to open my mouth wider, then go back for a cleaning and other mouth care.
Tuesday, May 26, 2015
Monday, May 25, 2015
Holiday Weekend
Beautiful weather this weekend, makes me thankful for the end of the cold weather this week! Hopefully we will similar weather for the walk in 2 weeks.
Having good days and bad days with allergies. Yesterday went well but today I had a rough start.
Kim and I did laps around the parking lot yesterday and today. Yesterday she helped me organize and file photos. We enjoyed a nap together this afternoon!
I go to the dentist tomorrow for a check up and to see if I have teeth that need to be pulled. It seems like I always go when I have my worst allergies! I am nervous because I expect bad news, gagging is at an all time high, and I can't spit.
A week from today I go back to the ALS clinic. It's amazing how much my body has degraded during that period of time! My right hand was weak, but functional, I walked with just a cane, I was able to eat well, I showered myself daily, I could do steps with no problem, and I could use a computer mouse with my right hand.
Kim's brother Pat and wife Nancy came down for the weekend and it was great to see them.
Kim was busy in the kitchen for several days preparing awesome food for the weekend.
We put in an offer on a condo up the street from Jean's condo (6 houses away) this weekend after seeing it on Friday and it was accepted today. It was in amazing condition and won't need as much work as the one we walked away from this week. We're not sure when the lady will be moving out but will start scheduling inspections and restart mortgage paperwork. We will paint, renew flooring, change out the kitchen countertop and do some work in the master bath.
Having good days and bad days with allergies. Yesterday went well but today I had a rough start.
Kim and I did laps around the parking lot yesterday and today. Yesterday she helped me organize and file photos. We enjoyed a nap together this afternoon!
I go to the dentist tomorrow for a check up and to see if I have teeth that need to be pulled. It seems like I always go when I have my worst allergies! I am nervous because I expect bad news, gagging is at an all time high, and I can't spit.
A week from today I go back to the ALS clinic. It's amazing how much my body has degraded during that period of time! My right hand was weak, but functional, I walked with just a cane, I was able to eat well, I showered myself daily, I could do steps with no problem, and I could use a computer mouse with my right hand.
Wednesday, May 20, 2015
This Week's Update
I had another anniversary week before last - my one year diagnosis on May 8. It passed without realization by me until Kim mentioned it.
On Friday last week when we were originally scheduled to close on the house across the street we learned that the bank appraisal came back as "uninhabitable". We haven't seen the appraisal, but believe it is due to the mold in the basement that the seller refused to remedy. We had plans to remediate this and some other issues that the inspection identified.
First the mold. From the appraisal we learned that it was in the floodplain. The bad appraisal was the final straw - somebody is telling us not to do it! So on Monday we terminated our agreement of sale since the lender wouldn't give a mortgage based on the appraisal. We should get our earnest money back eventually but it may be as long as a year since it was after the inspection period. Our house search has begun anew.
Allergies are horrible this week. I forgot how much worse they were here since we lived away from State College for 20 years. The first thing I do when I get up each morning after a visit to the bathroom is grab some Kleenex and take my allergy pill.
My right hand weakness has progressed to the point I no longer attempt to read the newspaper. I can read most of the things I am interested in online. I am having trouble with books also but they are more compact and a it easier to deal with.
This has affected my eating also and I have started using my left hand in addition to my right hand to hold a spoon. We are also having difficulty finding things I can eat with my degraded teeth and finding the right consistency of food that doesn't stick to my tongue or the roof of my mouth. I have a tooth that is starting to hurt and will probably have to be pulled so we are looking for a dentist.
I am doing a little better this week getting to my feet from a seated position. I am using the vibration plate exercise machine every day so maybe that is helping. I did 4 laps around the parking lot Monday morning with Stacie, my home health care aide. This is week 3 of the 12 week long term care elimination period, so after 9 more weeks my insurance policy will kick in with a daily limit of a little less than $300 and my insurance premium will also be waived.
NMFN disability pays for a service to help file for Social Security Disability Insurance, and we had a call at lunchtime today to fill out the application. Once SSDI is approved, Medicare is also approved. The SSDI payment will reduce my NMFN monthly payment.
On Friday last week when we were originally scheduled to close on the house across the street we learned that the bank appraisal came back as "uninhabitable". We haven't seen the appraisal, but believe it is due to the mold in the basement that the seller refused to remedy. We had plans to remediate this and some other issues that the inspection identified.
First the mold. From the appraisal we learned that it was in the floodplain. The bad appraisal was the final straw - somebody is telling us not to do it! So on Monday we terminated our agreement of sale since the lender wouldn't give a mortgage based on the appraisal. We should get our earnest money back eventually but it may be as long as a year since it was after the inspection period. Our house search has begun anew.
Allergies are horrible this week. I forgot how much worse they were here since we lived away from State College for 20 years. The first thing I do when I get up each morning after a visit to the bathroom is grab some Kleenex and take my allergy pill.
My right hand weakness has progressed to the point I no longer attempt to read the newspaper. I can read most of the things I am interested in online. I am having trouble with books also but they are more compact and a it easier to deal with.
This has affected my eating also and I have started using my left hand in addition to my right hand to hold a spoon. We are also having difficulty finding things I can eat with my degraded teeth and finding the right consistency of food that doesn't stick to my tongue or the roof of my mouth. I have a tooth that is starting to hurt and will probably have to be pulled so we are looking for a dentist.
I am doing a little better this week getting to my feet from a seated position. I am using the vibration plate exercise machine every day so maybe that is helping. I did 4 laps around the parking lot Monday morning with Stacie, my home health care aide. This is week 3 of the 12 week long term care elimination period, so after 9 more weeks my insurance policy will kick in with a daily limit of a little less than $300 and my insurance premium will also be waived.
NMFN disability pays for a service to help file for Social Security Disability Insurance, and we had a call at lunchtime today to fill out the application. Once SSDI is approved, Medicare is also approved. The SSDI payment will reduce my NMFN monthly payment.
2015 Hershey ALS Walk, Saturday June 6
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| 2014 Hershey ALS Walk for the Cure Team JFK |
The ALS Walk is 2.5 weeks away!
We have raised about 28% of our goal of $5000 and have about 20 walkers out of our goal of 40. Both of my brothers will be there, as well as my sister in law, niece, nephews, mom, aunt, 2 cousins, several friends, and 5 people from work (so far). Several of us will be in wheelchairs, including me, my mom, and possibly my aunt.
Thank you to everyone who has signed up to walk and has donated to date! If you haven't yet but would like to, please visit the Team Knudson website.
Friday, May 15, 2015
I Love to Read Books with Flawed Main Characters!
I mentioned previously that I am rereading many of my all time favorite series of fiction books. They all have one thing in common - a flawed main character who rises to the occasion and surpasses their own limitations and expectations. What does that say about my character? I was hooked by the first book in each series!
I am currently halfway through book 7 of the 10 book Chronicles of Thomas Covenant fantasy series by Stephen R. Donaldson. Thomas Covenant is a leper. The first book was published in 1977 and the last one in 2013. Before that I read Mordant's Need, a 2-volume series by Donaldson with Geraden as the main character. Geraden can't do anything right. Donaldson also has a 5-book series (The Gap) based in Outer Space. The Gap is very dark and I don't recommend for teenagers.
Other series and authors that I love and am planning to reread:
Opus, Berkeley Breathed - okay, Opus is a cartoon character who can't fly but you gotta love the humor! Dilbert is another favorite!
Odd Thomas, Dean Koontz - Odd sees dead people and the first book was made into a movie
Fortress Series, C. J. Cherryh - Tristen becomes a sorcerer eventually
Stephanie Plum, Janet Evanovich - if I was drinking something while reading about the misadventures of Stephanie and Lula I would have snorted it out my nose! I laugh out loud!
Bernie and Chet Series, Spencer Quinn - detective mysteries told from the viewpoint of canine crime solver Chet the Jet
A Game Of Thrones, George R.R. Martin - Also very dark and not for teenagers! I was a fan after the first book, which was released long before this series became popular on Showtime! With 2 books left to finish the series and George's health issues I'm not certain that either of us will be around to finish the last book. All of the characters are flawed but my favorite characters are Bran and Arya Stark, Jon Snow, and Tyrion Lannister.
Already read in addition to those listed above:
Christopher Snow series, Dean Koontz - Chris has XP and can only come out of his house at night
I have many other authors I have enjoyed collecting and reading which I will talk about in a future post.
This past weekend was the AAUW used book sale at PSU and this was the first year I didn't go in many years. I usually take my alphabetized missing books list for each author and try to fill in the gaps. Paperbacks range from $0.50-$2 and hardbacks from $2-$4, and the sale is always Mother's Day Weekend. If you live within 100 miles and are a book lover like me, this sale is not to be missed!
I am currently halfway through book 7 of the 10 book Chronicles of Thomas Covenant fantasy series by Stephen R. Donaldson. Thomas Covenant is a leper. The first book was published in 1977 and the last one in 2013. Before that I read Mordant's Need, a 2-volume series by Donaldson with Geraden as the main character. Geraden can't do anything right. Donaldson also has a 5-book series (The Gap) based in Outer Space. The Gap is very dark and I don't recommend for teenagers.
Other series and authors that I love and am planning to reread:
Opus, Berkeley Breathed - okay, Opus is a cartoon character who can't fly but you gotta love the humor! Dilbert is another favorite!
Odd Thomas, Dean Koontz - Odd sees dead people and the first book was made into a movie
Fortress Series, C. J. Cherryh - Tristen becomes a sorcerer eventually
Stephanie Plum, Janet Evanovich - if I was drinking something while reading about the misadventures of Stephanie and Lula I would have snorted it out my nose! I laugh out loud!
Bernie and Chet Series, Spencer Quinn - detective mysteries told from the viewpoint of canine crime solver Chet the Jet
A Game Of Thrones, George R.R. Martin - Also very dark and not for teenagers! I was a fan after the first book, which was released long before this series became popular on Showtime! With 2 books left to finish the series and George's health issues I'm not certain that either of us will be around to finish the last book. All of the characters are flawed but my favorite characters are Bran and Arya Stark, Jon Snow, and Tyrion Lannister.
Already read in addition to those listed above:
Christopher Snow series, Dean Koontz - Chris has XP and can only come out of his house at night
I have many other authors I have enjoyed collecting and reading which I will talk about in a future post.
This past weekend was the AAUW used book sale at PSU and this was the first year I didn't go in many years. I usually take my alphabetized missing books list for each author and try to fill in the gaps. Paperbacks range from $0.50-$2 and hardbacks from $2-$4, and the sale is always Mother's Day Weekend. If you live within 100 miles and are a book lover like me, this sale is not to be missed!
Thursday, May 14, 2015
Food!
With my weak jaws, degrading teeth due to constant clenching and grinding, and impaired swallowing capabilities, I am on a fairly limited diet and have been for months.
I have a lot of cravings that I can't indulge in. Pizza, cheese and crackers, potato chips, a chocolate bar, a sizzling steak, toast with butter and jelly, a stuffed omelet, a Philly cheesesteak, the list goes on and on.
Kim comes home for lunch every day to check in on us and to have a quick bite and to give me a Nutren 2.0 supplement. Most days she has a hot ham and cheese sandwich and some chips. I often sit there looking at what she is eating and wish I could take a big bite! The smell of the open bag of chips makes my mouth water.
For many months I made two eggs over easy before I went to work. They were easier to eat than the cereal, oatmeal or breakfast bars I ate every morning at work for many years. I ate a lot of soup or subway sandwiches for lunch. I ate sushi as often as I had a chance. I loved spicy food - Mexican, Chinese, Thai, the hotter the better. These days the only seasonings I use are butter, salt, sour cream, and every once in a while a little ketchup.
I was a pretty good cook. Mom taught all of us to bake and cook before we left home. I fixed food in a Mexican restaurant in Sunnyside called the Foxfire for over a year with my friend Tom Leachman and many talented cooks while I was in college. Sunday mornings at the Foxfire I was the sous chef for John Kiska for brunch. I learned how to cook and season food without making it too spicy hot so that Kim and my in laws would eat it. I must have made fresh salsa ala Foxfire more than 200 times over the last 28 years that Kim and I have been together, along with hundreds of pounds of chicken and beef burritos/tacos, refried beans (special ingredient cinnamon), hundreds of chicken parmigiana, and countless other favorites. Today I can't even hold a knife!
These days, everything I eat is either soft to begin with, mashed, or pureed in a food processor. I can't tolerate spicy food, don't use pepper (my favorite seasoning), can't drink coffee or hot tea, and don't drink tap water. I drink mostly Perrier or Other fizzy water (swallow easier for some reason).
For breakfast, I typically eat two eggs over easy, yogurt with pureed fruit, cream of wheats, or a smoothie. For lunch, tuna fish salad, chicken salad, soup, or cottage cheese with some fruit and flax oil. For dinner, I usually have some combination of pureed meat in gravy, steamed spinach, mashed potatoes, sweet potatoes, spaghetti squash and pasta sauce, apple sauce, etc. Every so often I treat myself to some Wegmans sushi, which isn't too bad pureed. I was doing almost weekly when they had their wild salmon sushi, now not as often. I don't eat a large volume since my jaws, arms, and hands are weak and the muscles get tired quickly. I would like to get more veggies into my diet but it is difficult to do.
Jean makes me a milkshake everyday to add calories. Thank you! Kim and Jean worry that I am not getting enough to eat. I rarely have much of an appetite and don't get much pleasure from eating.
I have a lot of cravings that I can't indulge in. Pizza, cheese and crackers, potato chips, a chocolate bar, a sizzling steak, toast with butter and jelly, a stuffed omelet, a Philly cheesesteak, the list goes on and on.
Kim comes home for lunch every day to check in on us and to have a quick bite and to give me a Nutren 2.0 supplement. Most days she has a hot ham and cheese sandwich and some chips. I often sit there looking at what she is eating and wish I could take a big bite! The smell of the open bag of chips makes my mouth water.
For many months I made two eggs over easy before I went to work. They were easier to eat than the cereal, oatmeal or breakfast bars I ate every morning at work for many years. I ate a lot of soup or subway sandwiches for lunch. I ate sushi as often as I had a chance. I loved spicy food - Mexican, Chinese, Thai, the hotter the better. These days the only seasonings I use are butter, salt, sour cream, and every once in a while a little ketchup.
I was a pretty good cook. Mom taught all of us to bake and cook before we left home. I fixed food in a Mexican restaurant in Sunnyside called the Foxfire for over a year with my friend Tom Leachman and many talented cooks while I was in college. Sunday mornings at the Foxfire I was the sous chef for John Kiska for brunch. I learned how to cook and season food without making it too spicy hot so that Kim and my in laws would eat it. I must have made fresh salsa ala Foxfire more than 200 times over the last 28 years that Kim and I have been together, along with hundreds of pounds of chicken and beef burritos/tacos, refried beans (special ingredient cinnamon), hundreds of chicken parmigiana, and countless other favorites. Today I can't even hold a knife!
These days, everything I eat is either soft to begin with, mashed, or pureed in a food processor. I can't tolerate spicy food, don't use pepper (my favorite seasoning), can't drink coffee or hot tea, and don't drink tap water. I drink mostly Perrier or Other fizzy water (swallow easier for some reason).
For breakfast, I typically eat two eggs over easy, yogurt with pureed fruit, cream of wheats, or a smoothie. For lunch, tuna fish salad, chicken salad, soup, or cottage cheese with some fruit and flax oil. For dinner, I usually have some combination of pureed meat in gravy, steamed spinach, mashed potatoes, sweet potatoes, spaghetti squash and pasta sauce, apple sauce, etc. Every so often I treat myself to some Wegmans sushi, which isn't too bad pureed. I was doing almost weekly when they had their wild salmon sushi, now not as often. I don't eat a large volume since my jaws, arms, and hands are weak and the muscles get tired quickly. I would like to get more veggies into my diet but it is difficult to do.
Jean makes me a milkshake everyday to add calories. Thank you! Kim and Jean worry that I am not getting enough to eat. I rarely have much of an appetite and don't get much pleasure from eating.
Wednesday, May 13, 2015
Update
It's been over a week since my last post, and I have no excuse!
Last week we started home health care 2 days a week, Monday and Thursday mornings from 8:30-12:30. My aide's name is Stacie, she is 23 and lives in Spring Mills, about 30 minutes away. She helps me shower and dress, does laundry, runs the vacuum and dusts, cleans my bathroom, and helps with food preparation.
We were supposed to close on our condo on Friday, but the mortgage is still in underwriting, so probably will move to early next week. We walked through with our realtor Kris Hanahan and a contractor last week to discuss renovations but haven't received his estimates yet. I estimated it myself and came up with $86K to redo the kitchen, master bath, replace sliding glass door to the patio with a French door, paint everywhere, replace all flooring, add a fireplace, and window treatments.
I had another fall last Thursday night in the bathroom around 11:30 as I was getting ready for bed. I did something stupid! I was standing in the middle of the bathroom not holding onto anything or leaning against anything trying to put a fresh piece of tape on my stomach to hold the feeding tube. I had pulled up my shirt, grabbed a piece of tape and was looking down at my stomach trying to tape it on when I lost my balance. Fortunately I fell sideways into the shower instead of the sink and granite countertop! I fell into the shower curtain before falling to the floor of the low entry shower, bruising my hip and wrenching my left shoulder. Fortunately Kim heard me and came charging upstairs to my rescue!
Ellen came for weekly visit on Friday and KC and Paul came for a visit Saturday afternoon. It was beautiful out both days so we spent some time both days on the patio catching some rays!
After 2 attempts to have a king mattress delivered ASAP to replace the waterbed, Kim has a new bed to sleep on! We were able to reuse the bed frame and got box springs and a new king pillow top mattress delivered and the waterbed removed for less than $800 from Tubbies Waterbed within 24 hours of ordering after the first company failed to deliver on Tuesday as promised.
My dad and I were debating a trip to Boston this weekend but decided to postpone until June when Kim can go with us and cousin Hilary will be home visiting from Ireland. We will celebrate my birthday and Fathers Day while we are there and Hilary's birthday is June 24th so we will celebrate her as well!
The 2015 Hershey ALS Walk for the Cure is 3.5 weeks away on June 6. I sent a goodbye and thank you email to my Baker colleagues yesterday and several people have signed up as a result. My family is coming in town from Denver, Charlotte, Grand Junction, and Kansas City. With my mom, brothers Forest and Chuck, Chuck's wife Leigh, sons Elijah and Benjamin, daughter Amelia, Aunt Geneva, and cousins Frank and Loraine, there will be a boatload of the Knudsons/Cooleys as well as the Harrises there to support us.
My physical condition is worse this week. I am having trouble standing up from a sitting position, and my legs, arms, and hands are weaker. I grieve for my lost capabilities that people take for granted. Jeans window in the family room overlooks Westerly Parkway and there are always people walking dogs, running and bicycling along the sidewalks. What I wouldn't give to be able to join them! It is time to think about a hospital bed, wheelchair, and lift chair and the additional help I I'll need as I continue to get weaker.
My friend Ellen talked to her pastor and I will email her to set up a time to come for a visit next week.
Mentally and emotionally I am doing okay. The Skypes with family, visits from friends, and emails do a lot to cheer me up and raise my spirits. Kim and I try hard to be happy for each other but it is difficult some days. It is difficult to be happy when all you can do is sit and read, go online, or watch Tv.w
Last week we started home health care 2 days a week, Monday and Thursday mornings from 8:30-12:30. My aide's name is Stacie, she is 23 and lives in Spring Mills, about 30 minutes away. She helps me shower and dress, does laundry, runs the vacuum and dusts, cleans my bathroom, and helps with food preparation.
We were supposed to close on our condo on Friday, but the mortgage is still in underwriting, so probably will move to early next week. We walked through with our realtor Kris Hanahan and a contractor last week to discuss renovations but haven't received his estimates yet. I estimated it myself and came up with $86K to redo the kitchen, master bath, replace sliding glass door to the patio with a French door, paint everywhere, replace all flooring, add a fireplace, and window treatments.
I had another fall last Thursday night in the bathroom around 11:30 as I was getting ready for bed. I did something stupid! I was standing in the middle of the bathroom not holding onto anything or leaning against anything trying to put a fresh piece of tape on my stomach to hold the feeding tube. I had pulled up my shirt, grabbed a piece of tape and was looking down at my stomach trying to tape it on when I lost my balance. Fortunately I fell sideways into the shower instead of the sink and granite countertop! I fell into the shower curtain before falling to the floor of the low entry shower, bruising my hip and wrenching my left shoulder. Fortunately Kim heard me and came charging upstairs to my rescue!
Ellen came for weekly visit on Friday and KC and Paul came for a visit Saturday afternoon. It was beautiful out both days so we spent some time both days on the patio catching some rays!
After 2 attempts to have a king mattress delivered ASAP to replace the waterbed, Kim has a new bed to sleep on! We were able to reuse the bed frame and got box springs and a new king pillow top mattress delivered and the waterbed removed for less than $800 from Tubbies Waterbed within 24 hours of ordering after the first company failed to deliver on Tuesday as promised.
My dad and I were debating a trip to Boston this weekend but decided to postpone until June when Kim can go with us and cousin Hilary will be home visiting from Ireland. We will celebrate my birthday and Fathers Day while we are there and Hilary's birthday is June 24th so we will celebrate her as well!
The 2015 Hershey ALS Walk for the Cure is 3.5 weeks away on June 6. I sent a goodbye and thank you email to my Baker colleagues yesterday and several people have signed up as a result. My family is coming in town from Denver, Charlotte, Grand Junction, and Kansas City. With my mom, brothers Forest and Chuck, Chuck's wife Leigh, sons Elijah and Benjamin, daughter Amelia, Aunt Geneva, and cousins Frank and Loraine, there will be a boatload of the Knudsons/Cooleys as well as the Harrises there to support us.
My physical condition is worse this week. I am having trouble standing up from a sitting position, and my legs, arms, and hands are weaker. I grieve for my lost capabilities that people take for granted. Jeans window in the family room overlooks Westerly Parkway and there are always people walking dogs, running and bicycling along the sidewalks. What I wouldn't give to be able to join them! It is time to think about a hospital bed, wheelchair, and lift chair and the additional help I I'll need as I continue to get weaker.
My friend Ellen talked to her pastor and I will email her to set up a time to come for a visit next week.
Mentally and emotionally I am doing okay. The Skypes with family, visits from friends, and emails do a lot to cheer me up and raise my spirits. Kim and I try hard to be happy for each other but it is difficult some days. It is difficult to be happy when all you can do is sit and read, go online, or watch Tv.w
Sunday, May 3, 2015
Waterbed Leaks
Kim got up yesterday morning and when she came upstairs she had a distraught look on her face. When she pulled the sheets off the bed to wash them they were wet. Turns out the waterbed mattress on her side has been leaking. We bought it in 1996 so it is almost 20 years old and has been in our bedroom in the basement for at least 10 years.
We briefly debated trying to patch it but decided it would be too difficult.
Jean has a king size bed so we will buy her a new mattress and move her old one downstairs for Kim to sleep on. We drained the leaking mattress and cleaned out the water in the liner using a wet vac. Kim will sleep on my side of the waterbed until a new mattress is delivered. We will go shopping today.
I went downstairs to supervise, first time I did the basement stairs in 2 months. It didn't go very well. I am much weaker now than 2 months ago and I won't be doing that again any time soon.
One benefit was Kim didn't sleep well last night and early this morning crawled into the double bed with me. We held hands and slept until 7:30. That was the first time we slept in the same bed in 2 months.
Home health starts tomorrow. We'll start with 4 hours Monday and Thursday mornings and add hours as needed. A long term care nurse will visit Wednesday to do an assessment and after a 12-week elimination period the insurance company will start to pay up to $283/day. I need to make a list of activities today for the home health aide to help with in addition to bathing and dressing.
I'll Skype with my family later today. We need to discuss plans for the Hershey ALS Walk in 5 weeks and dad and I are planning for him to visit in 2 weeks and will attempt a trip to Boston to visit my uncle and his family.
We briefly debated trying to patch it but decided it would be too difficult.
Jean has a king size bed so we will buy her a new mattress and move her old one downstairs for Kim to sleep on. We drained the leaking mattress and cleaned out the water in the liner using a wet vac. Kim will sleep on my side of the waterbed until a new mattress is delivered. We will go shopping today.
I went downstairs to supervise, first time I did the basement stairs in 2 months. It didn't go very well. I am much weaker now than 2 months ago and I won't be doing that again any time soon.
One benefit was Kim didn't sleep well last night and early this morning crawled into the double bed with me. We held hands and slept until 7:30. That was the first time we slept in the same bed in 2 months.
Home health starts tomorrow. We'll start with 4 hours Monday and Thursday mornings and add hours as needed. A long term care nurse will visit Wednesday to do an assessment and after a 12-week elimination period the insurance company will start to pay up to $283/day. I need to make a list of activities today for the home health aide to help with in addition to bathing and dressing.
I'll Skype with my family later today. We need to discuss plans for the Hershey ALS Walk in 5 weeks and dad and I are planning for him to visit in 2 weeks and will attempt a trip to Boston to visit my uncle and his family.
Saturday, May 2, 2015
I've Fallen and I Can't Get Up
Thursday night I went to the bathroom to get ready for bed after Jean was already in bed and Kim went downstairs to get ready for bed. I went into the recliner room to read and somehow lost my balance after I let go of my rollator walker. It was a slow motion fall. As my legs gave way I ended up partway in the desk chair and thought I might catch myself, but then fell off the seat and onto the floor, rolling backward. My head hit the carpet gently and missed the desk, fortunately.
Unfortunately, I couldn't get off the floor. I tried pounding on the floor with my heels as my fists don't generate much force these days. I tried yelling, but Jean's door was closed with the TV on and Kim was in the bathroom running water. I sent Kim an email expecting she would check her account on her iPad downstairs before turning off the lights and going to sleep.
I was eventually able to wriggle around so that my back was against the recliner, and tried to use the chair get my knees under me so I could use the chair to stand up, but my arms and legs were too weak. I continued yelling and pounding on the floor with my heels.
After what seemed like 30 minutes, but was probably only 15, I was starting to think I would spend the night on the floor. Eventually Kim heard me pounding on the floor and came to my rescue. We were able to get me on my knees after several attempts and then get me up and into the recliner after which I had an emotional breakdown. Eventually I calmed down and Kim made me take a lorazepam to help. After we cried and commiserated for a while I sent her back down to bed and told her I loved her and would be okay.
That night I placed an Amazon order for a waist belt to make it easier to lift me and a panic button I can wear around my neck that will notify someone in the house that I need assistance.
Unfortunately, I couldn't get off the floor. I tried pounding on the floor with my heels as my fists don't generate much force these days. I tried yelling, but Jean's door was closed with the TV on and Kim was in the bathroom running water. I sent Kim an email expecting she would check her account on her iPad downstairs before turning off the lights and going to sleep.
I was eventually able to wriggle around so that my back was against the recliner, and tried to use the chair get my knees under me so I could use the chair to stand up, but my arms and legs were too weak. I continued yelling and pounding on the floor with my heels.
After what seemed like 30 minutes, but was probably only 15, I was starting to think I would spend the night on the floor. Eventually Kim heard me pounding on the floor and came to my rescue. We were able to get me on my knees after several attempts and then get me up and into the recliner after which I had an emotional breakdown. Eventually I calmed down and Kim made me take a lorazepam to help. After we cried and commiserated for a while I sent her back down to bed and told her I loved her and would be okay.
That night I placed an Amazon order for a waist belt to make it easier to lift me and a panic button I can wear around my neck that will notify someone in the house that I need assistance.
Friday, May 1, 2015
Old and New Friends Visit
Last Saturday the Spokanes and the Hanahans came to visit. Dave Spokane, Kris Palmieri Hanahan, Tracy Hanahan, Kim and I all worked for HRB Singer here in State College in the mid-late 1980's. I worked on the B-2 Bomber simulator, then was assigned to the PSU Applied Research Lab. Both projects involved manipulating and displaying geographic information, which was the stepping stone to my career in the geospatial industry.
Dave and Julie Spokane and my pen pal daughter Olivia drove down from Nashua, NH to visit son Matt who attends Penn College in Williamsport. Kris and Tracy joined us for lunch - pizzas from Hiway Pizza, including a red stuffed pizza, my favorite.
Olivia and I started emailing after she donated money to the ALS Association last year in my honor, and is a beautiful, sweet, smart, and very energetic young lady! Matt is a very nice young man and he had us laughing often.
Kris and I worked together after HRB at Keystone Management Systems, a transportation GIS company/startup in downtown State College, and Kris is our realtor in State College. Kris and Dave both graduated at the same time in Computer Engineering at the Rochester Institute of Technology.
We had a wonderful visit and Olivia entertained us with her gymnastics outside when she grew bored sitting and listening to the conversation. We laughed a lot until everyone's cheeks hurt. It was wonderful time and the hours passed by quickly. It is a blessing to Kim and I to have reconnected with our old friends and made some new ones!
Thank you!
Dave and Julie Spokane and my pen pal daughter Olivia drove down from Nashua, NH to visit son Matt who attends Penn College in Williamsport. Kris and Tracy joined us for lunch - pizzas from Hiway Pizza, including a red stuffed pizza, my favorite.
Kris and I worked together after HRB at Keystone Management Systems, a transportation GIS company/startup in downtown State College, and Kris is our realtor in State College. Kris and Dave both graduated at the same time in Computer Engineering at the Rochester Institute of Technology.
We had a wonderful visit and Olivia entertained us with her gymnastics outside when she grew bored sitting and listening to the conversation. We laughed a lot until everyone's cheeks hurt. It was wonderful time and the hours passed by quickly. It is a blessing to Kim and I to have reconnected with our old friends and made some new ones!
Thank you!
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