Pulmonologist Visit and a roller coaster weekend.

I went to the pulmonologist last Thursday and it was the kind of depressing visit. Due to my MS, my diaphragm and other muscles that expand and contract for breathing are getting weaker. He really didn't have anything to help me except to get me tested for lung capacity and end up getting a justification for a BPAP machine. I think it is similar to a CPAP but little bit different. He thought I should wear it at night and help my breathing muscles to rest in the hopes that I would have more breathing energy during the day. I don't think I'm in danger it's just that some days I am almost unable to speak, other days I can do pretty good as long as there is no background noise.
So since that visit I have been a real roller coaster with emotions. One problem is that I do not go to sleep when my wife does and if I wear this I won't be able to do anything. I can't use my smile mouse program or even the voice software. I watch a lot of Amazon prime video shows. The problem with these is not that my wife can't start them and so if she goes to sleep I wouldn't be able to stop them and just go from one episode to the next. I have found one recently that's quite fascinating it is called Orphan Black. I might post later what it is about. To involved to explain it today.
Since that doctors visit my moods have been all over the place. It was a holiday weekend and it started out pretty rainy weather. The weekends are always hard for me because that is when I feel when I lost the most. I want to do things and activities with my wife but am unable to. I end up feeling like a boat anchor. One day I got to go out of the porch and I listened to music.
I also started praying which usually is a good thing but on that day I ended up being angry and sad. Anyone who has a chronic disease knows these feelings I think. I often pray that God would just let me come home. But that doesn't seem to be in the cards.
Then my niece stopped over with her new dog and he got to play with Atlas in the backyard. We have a fence now, chain-link. We mainly got it because the neighbors' dog would run over here whenever Atlas was out. For some reason they made a big stink about the property line which we had surveyed and then re-marked 2 weeks before. For some reason they waited until all the fence people were here working and started a fuss. They seem to think the surveyor and the pins that were in the ground since before I was born were wrong but they waited until that day to cause a stink. I'm thinking they're pretty weird now. We used to get along with them okay, but no more.
Then Memorial Day came and it was my youngest son's birthday. We had a bunch of people over and our sons Tom and Matt invited some friends. There were dogs and kids. It was nonstop movement in the really raised my mood up. It was a nice distraction and I really appreciate it. It got me outside of my own pity party and that is always a good thing.

Follow up to an earlier post – Hermit

The other day I posted about MS making me into a hermit. I don't want people to think that that's really sad and feel sorry for me. I can safely say that I have only felt alone for a few months since I turned 25. A number of things happened when I was 25. One of which was that we had our 1st child. For about the next 30 years there was always someone around whether it be one of my 3 sons or my wife..
When our sons got into high school and older there was one time where they were all going to be gone and my wife had something to do on a Friday evening. I talked all week about how it was the 1st time I'd gotten to do whatever I wanted in years. Then when that Friday came and I came home by myself I ended up sitting on the couch trying to remember what it was I did when I was by myself. I ended up never figuring out what it was I was missing out on and ended up watching TV.
A few years before this time frame, my best friend Mark left to go to graduate school in Michigan. At MSU to be exact. He'd gone to Coe College here in town and so we often did things together until he moved away. We fished for trout together which involved a lot of driving up to Northeast Iowa. We rode our motorcycles together. And to be honest we drink together quite a bit. I've never had a better friend and to be honest it was a little difficult for me when he left. It was a great move for him and no one can fault him. I realize we all have to grow up sometime!
Another thing that happened near that time frame was that I was laid off from my job. There was literally no work openings anywhere in Cedar Rapids. I spent a lot of my day taking care of our new baby. My wife's grandmother Helen would come over and babysit our son Dan when I needed to go look for work. One day she left behind, on accident, a book she was reading about the book of Hebrews. I have been reading the Bible for months by then and trying to make myself acceptable to God. The better I got on the outside the worse I felt on the inside. I soon became an unbelievable burden to me. Then I read the book grandma Helen had left behind and I came to the verses in Hebrews that said "without shedding of blood there is no remission for sin".
When I read this verse it was like all the dominoes started falling into place of all that I'd read before in the Bible. I realize then that I didn't need to make myself perfect that God had already done the work for me. I accepted Jesus as my Lord and Savior and from that day onward I have always felt like he was with me. Recently on Facebook my wife's aunt posted the word to him about walking in the garden. It is about the women who ran to Jesus is tomb that first morning after he arose and he appeared to them. The words from them are quite beautiful. "And he walked with me and he talked with me and he told me he loves me so. And the joy we shared as we tarried there none other has ever known". You see knowing Jesus is a personal thing in a very real way to those know him and of accepted him.

Ocrevus Update

We got some news about the new drug Ocrevus on Monday afternoon. Like everything so far with MS it's good news and bad news. I will start with the bad news; it is shorter. This drug for my MS was rejected by our insurance because it is not listed in their system yet. This is pretty annoying because when I was working there was a drug that help me stay awake and when we switched insurance companies the new company denied the drug for me. They said it was not approved by the FDA for my particular disease. They would not cover off label uses for drugs. Now I find it really annoying that an FDA drug approved for me in particular is denied. It's not even the same insurance company when I think they all just use any excuse to deny claims. I guess they need to pay for their gorgeous glass skyscraper office buildings more than they need to be honest. I have come to hate insurance companies with a passion.
The good news is that Genentech the manufacturer is going to provide the drug to me at no cost initially. Not sure what this means for the future but at least I can get started on. The neurologist office is now making an appointment for us to go to the doctors that would administer the drug. We'll find out soon when that appointment is. I have no idea when it will happen but it seems like things are going well and the neurologist nurse was very upbeat. She told my wife that I am the 5th person with MS that is approved from their office. I know Genentech wants to see how it works with somebody who is non-ambulatory because most of the people who will get this can still get around some.
I have tried lots of different things like nutritional supplements and such over the years and nothing as slow this disease down. It has advanced faster and further than anyone I have met in my support group with the same type. So my attitude is probably not the best because I've been disappointed so many times in the past. I was told to keep an optimistic attitude and that will benefit you but that has not happened. The optimistic attitude I had since my 2009 diagnosis was ground up and tossed aside by the speed with which my disease progressed. So I'm approved now and hopefully within a month I will get the new drug. I don't expect it to improve my condition, just slow the advance, especially with my breathing problems. Oh well here I go again trying to be hopeful!

Hermit – Has MS made me one?

Today on Facebook I saw one MS organization had an article and a question that asked "has MS made you a hermit?" I have primary progressive MS and I would have to say it has progressed, so that is true now. I have become a hermit more or less.
I've been in a wheelchair for a number of years but used to be able to transfer to the driver's chair in my van. I was still working at the time and really came to enjoy being around people. About 3 years ago I could no longer run my computer because of the loss of my hand use and about the same time I could no longer drive. Lifting my legs up from gas to brake pedal became too difficult.
I can still zip around in my power chair and would go out side. My wife would take me to quite a number of places on the weekends and I enjoyed getting out among people. And became very heat sensitive about the time I could no longer work and so the weather made a big impact on my getting out.
Now my disease is progressed and a few years ago I get a different power chair so that the seat and back of the seat can be tilted or inclined. I also have straps to all the into the chair so I don't tip forward because I can't lift myself up anymore at the waist. So got out as often as I could with my wife's help. It was pretty easy because there no handicap spots for my van to park in she could just pull up open the van with the ramp night could drive out. Then she could go park anywhere.
Last December though I was having problems with my right hand. Many times my one hand would get stuck on my chair joystick and I would drive out of control. To avoid this I had the wheelchair people move the joystick control more out of my reach so this didn't happen. Partly because of this and partly because my hand is getting very bad I have been no longer able to drive my chair myself. I had the wheelchair people add a "caregiver control" on the back.
This is required for me to move now that someone drive me around using the back control. Unfortunately it is much much harder to drive my chair from that position then it is from my position sitting in the chair. As a consequence is much much harder for me to go anywhere. We require a handicapped parking place with van access on the side. This by itself limits where we can go because the spots are often filled and for any large events they're almost impossible to find. It takes about 10 minutes for my wife to park and get me out. So it's no longer very simple to just drop me off go park where she can. Because of this problem I would say I've become a hermit. It is sure a lot of trouble now to go anywhere and we have to think about parking. I have found I am fine with it sitting at my computer reading, scrolling Facebook were watching TV. It's become so complicated to go anywhere that I have become a hermit. It become my greatest impediment so far to not be able to drive my wheelchair. I appreciate my wife and sons and their willingness to take me places but I do not enjoy the effort they have to go to. It is easier to think I will just stay home.

Mixed signals

I'm not sure how to take this but last night Macy came up on the bed and curled up by my head. She groomed my hair and my sideburns and then licked my arm for a while. Then she curled up and went to sleep on my shoulder. A little while later she got up and slept between my knees. Always enjoyed having her sleep on top of me.
The part that makes me confused is that when we woke up my wife told me that she threw up a hairball between my legs. Not sure whether to feel appreciative that she gave me some attention or that she used me for a throw up spot. I guess I'm going to err on the side of thinking she likes me.

Weird weather

Not much to post today. Wild swings in the weather this week. Earlier in the week it hit 90°. Had to turn the AC on. Probably would've just toughed it out except for the MS. Sleeping would've been awful. Now today it's a high of 50°. Bizarre. Now I have to have the heat on. I remember a time before MS or would just toughed out these 2 highs and lows. Oh well, at least I found out there's no problems with the AC for this summer.

Cutest Cards and Tuesday mood

Today I'm posting the cutest card I received. It was a difficult choice and these 2 ended up tying. The one with the dog nose and stick reminded me of Atlas. The one with the cupcakes reminded me of my 1st dog, Chester, who could do a biscuit on the nose trick. I would put a biscuit on his nose and he would not try to get it until I said "get the biscuit pup". You would usually flip it up over his head and would end up way behind him. He would sit there with a biscuit for the longest time until I told him to get it. I have to say I've missed that dog terribly. In a lot of ways Atlas reminds me of him except Atlas is a lot calmer. Chester was an Irish setter and they tend to have very short memories and are overcome by things they smell. I was always amazed how long he would hold the biscuit.
Now Atlas can do that trick. He never lets a biscuit hit the ground though. You can also put a ball in the hollow between his eyes and his nose and he will wait and do you tell him he can get it. As with the biscuit it never hits the ground.
Well yesterday was my 1st day back in my routine since my big birthday weekend. I have to admit I was pretty glum in the evening. I think seeing all those people that I used to see regularly sunk in how little I see of them now. I'm usually fine by myself and of always been something of a loner but I found I miss some of the contact I used to have. Especially with my friends from work. I still see some of them from time to time but I miss that daily interaction and the laughs we had. I was always trying to get Jolene to snort while she laughed. Julie was harder to trick and my goal was to have her shoot her drink out of her nose because I said something funny and surprised her.
That's all I have to say for today. Tom will be leaving tomorrow and so I will really be back to reality later in the week. Take care friends!

60th birthday – Coolest Card

I hope you can read the inside of this card. I have voted it the coolest card I got. After reading the outside I thought it would be a bunch of praises about me. When I opened it I found it pointed to my Savior Jesus and I thought that was awesome. My 60th birthday was yesterday. Tomorrow it will post the cutest card that I received.

Ocrevus– Approval

Recently I have been made aware of a new drug called Ocrevus and has been approved for Primary Progressive MS which is the type I have. This is the 1st medication that has been approved by the FDA for my type. To be honest I never thought I would see anything approved during my lifetime and this was a surprise to me. So last week my wife and one of our sons took me to see the neurologist. We were afraid that he was going to tell me that I am too far gone for to have much effect. I took my muscle with me to intimidate him. I'm not sure if that worked when he said he had no problem prescribing it for me.

My wife talked to the drug rep at a MS walk and they thought that my neurologist might balk at prescribing it so that is why took my son with me. We gave him credit for intimidating the neurologist. I agree that I am pretty far gone but there were 4 areas that I felt that if this drug can slow the disease progression it was worth it. I can still move my right hand a small amount and use it on the back incline of my power chair. This gives me the ability to lay back and rest which I do during the day. I can still use my neck to lift and turn my head and I don't want to lose that. The most significant was that this MS has affected my diaphragm which affects my speech and also my ability to cough up the phlegm which plagues me due to sinus issues. There is also my fear that I would have my eyesight affected and if this drug prevents or postpones it then  it would be worth it.

My wife got the impression from the drug rep that very few people who were nonambulatory had tried this medication and they were looking forward to seeing if it helped me.

The neurology nurse told us of how the process would work. They would do all the paperwork and then submit it to my insurance company. We expect the insurance company will accept it. At the same time the drug manufacturer Genentech as well as the marketing company both have programs in place to aid with the cost of the drug depending on the insurance coverage.

Friday evening my wife got a call from the nurse and she said everything was progressing well and she was very encouraging as to how it was going to proceed. So right now we are waiting to see what the next step all these different companies come up with. Not sure when I'll actually see the drug.

It would start with a 300 mg infusion intravenously 2 weeks later another 300 mg. 6 months after that would go up to a 600 mg and they continue with 600 mg every 6 months. Before we went to the neurologist I had looked at a list of some of the side effects. The list was a little troubling especially the one that said it may cause problems breathing for a while. Course we won't know until we actually try it but I decided full steam ahead! If the side effects are too bad they are too bad and we will deal with it then.

I will try to keep you posted of the progress when there is any via my blog.

My 60th Birthday Party

Monday will be my 60th birthday. I wife had a party for me at a nearby bar and grill called the Starlite. They are known for what they call their Super Burger. Their fame goes back as far as I can remember. For the occasion my wife made cupcakes that resemble their burgers as well as sugar cookies that looked like their fries. These were making it with the attendees as well as the staff.
There are at least a dozen people that I wish we could've invited besides the ones we did but I had to consider the indoor venue size. I kept making the list bigger and bigger and realized I couldn't add any more. It was pretty crowded in there and I hope everyone had a good time. Since I have trouble talking very loud I'm afraid I didn't get to chat with everyone like I wished I could have.
We thought about having it outdoors but you just never know what the weather is going to be like in May. None of the pavilions around here are enclosed at all so we were worried about wind and rain.
My sister and her husband drove all the way from Des Moines to spend just a few hours with us. That was so nice of them.
I got lots of cards and I will probably try to post the coolest one and the cutest one later on. I will need someone to take photos of them. Right now it's pretty hard to choose but the one with a Labrador with 2 cupcakes on his nose looks pretty cute to me.
While we were there my wife received a call from our neurologist's nurse is will we consider good news about the drug is approved for my MS. I will post on that later.
Once again thank you for all your thoughts and prayers and for reading my blog.

MS walk – the team Phil's steps

I posted something about this on Facebook but not on my blog. Our city had an MS walk a few weeks ago and my wife's sister's and nieces made up a team. They called it Phil's Steps. They raised the third-highest total of dollars for our walk. I feel so honored and surrounded by love of these people. There are so many that would do almost anything for me. I wish there was more for people to do but I try to be low maintenance. Ha Ha! And maybe someday I will be brave enough to share the story of how I got to bed the night of my wife's birthday party.

Miscellaneous update – Wednesday

I haven't posted anything this week so I feel like I should post something. Today is a very rainy day with a storm moving in later. I felt sorry for the mailman as he was walking around and it was raining pretty hard. It has been pretty busy week. Tom and Atlas are here so Tom gets me up in the morning. He lets me sleep later than I normally do so that shortens my day a little bit. It's nice having them here and Atlas is my sleeping buddy. When I go to bed he comes in and sleeps with me for at least an hour. In the mornings after Janette goes to work he gets up on the bed and sleeps with me some more. Used to make Macy jealous but now she just doesn't seem to care. Cats are like that you know.
Monday I had a appointment with the urologist, my yearly sit down with him to go over the results of my ultrasound of my bladder and kidneys. No problems. Last year he found a bladder stone but this year I got a clean bill of health.
Yesterday my neurologist had a cancellation so we got to see him about the new drug that is approved for my type of MS. Is the 1st medication approved by the FDA for me. I'm not sure what to expect but it is supposed to help slow the disease progression which in my case is been extremely fast. To be honest I needed this 5 years ago but at least they're working on it. From the talk my wife had with the representative at the recent MS walk I may be the 1st non-ambulatory person to try it. There's a lot of red tape involved as far as approval for paying for it. If insurance won't cover it there are programs with the marketing company as well as the manufacturer to have it paid for. Of course all of this takes a lot of time and paperwork. I got the impression from the doctor that no one has actually received their infusion yet. Hopefully we'll hear something sooner rather than later. The marketing company and manufacturer both have a program to help even with the deductible if it is too high so that is good.
now that I have my 90 pound sleeping buddy I look forward to bedtime even more. My wife also makes him say night night to Papa. She makes him come up and he puts his paws on my chest and lays his head on my chest also. He is so sweet when he does this. Sometimes he'll give me a kiss on my chin. In the mornings When I get up Atlas likes to have my covers thrown over him and we referred to him as Taco dog. Some days he stays in there even after we leave the room and we have to call him. He sure seems to like getting covered up.
Well I don't have much else to report today. Hope everything is good with you and thank you for reading my blog.

Childhood cancer – a story close to my heart.

https://www.gofundme.com/goteamevie
We went to a great nephews 2nd birthday party a few weeks ago. One of his mother's friends has a little girl named Evie. I knew this little girl had cancer a while ago. The whole time we were there she was so active and energetic I was really impressed. I don't think there was another kid there that was busier than her. I would have to say she found a place in my heart. Her mom was there also and I was impressed with her parenting. She always kept one eye on her but just let her play. That would've been hard to keep up with her but her mom always had one eye on her. She let her play though and was not overprotective.
On our way home I mentioned to my wife how cute and active Evie was. She told me her cancer and come back and it broke my heart little bit. Childhood diseases make me pretty angry and they seem so unfair. I was not disabled until I was in my 50s. I don't think God works this way but I would be glad to take her disease if she could be healed of it.
I find she is still in my heart even after all these weeks and I pray for almost every day. It would be every day but I tend to forget things. Please pray for Evie, that she would be healed of her disease. Also that they would be born up in this time. I have heard they are doing very well in their attitude and I'm so glad they're optimistic. I've included the link to her Gofundme page.

Stephen Hawking's prediction

Yesterday I read that Stephen Hawking said we need to find another planet to live on in 100 years or less. He thinks this planet will not sustain our population by then. I'm pretty sure there is no technology available now or in the next hundred years that would allow a huge migration to a different planet light years away. So if he is right there is not much hope for the human race. This made me think of the words of a hymn.
"Turn your eyes upon Jesus
look full in his wonderful face
and the things of earth will grow strangely dim
in the light of his glory and grace."
If Mr. Hawking is correct Jesus is the only answer. Even if they could terraform Mars it would take centuries to make it sustainable for human life.

MS Post – Brain Fog

One of the symptoms that is getting more prevalent with my MS is what's called MS brain fog. This affected me Tuesday and Wednesday. Monday my wife stayed home from work so I didn't get out of bed till noon. That night I had weird dreams, more so than normal. I've always had vivid dreams but the dreams I had left me feeling foggy in the brain Tuesday and Wednesday. Today I'm not affected like I was and feel much more in tune with what's going on.
Sometimes I tell my wife and sons about my dreams that stick with me. I usually just tried to describe the main points. Listening to other people's dreams is usually pretty boring.
The one I had Monday night is affecting me. Tuesday was one where I went to my neurologist and he told me he would not prescribe new medication approved for my type of MS. In my dream I told him there was no reason to deal with it anymore and I decided to drown myself. This was the strangest part of the dream. As I ended up in the water I found that I could not drown myself because I can breathe underwater like a fish. I woke up pretty angry that I could not get out of MS no matter what I did. Pretty strange dream and is stuck with me all day.
I think my dreams are affected by the medication I take for their neuralgia in my feet. I take pretty much the same group of pills at bedtime as I do before my wife goes to work except I don't take Benadryl in the mornings. So I've come to the conclusion it is the drug Gabapentin that affects my dreams.
The next morning had a vivid dream about a party at my former employer from 30 years ago. There were 5 owners that work alongside of everybody. In their party they had a blackberry wine that was only for the owners and they wouldn't share it with anybody house. I got angry and left and in my dream I could walk normally. As I was walking I found a cat that had no rear legs or back and it all. It was sort of like A cat. I carried this cat and was trying to find someone who would take it home with them. It was dragging itself around by front paws but it was a very happy animal. In my dream I kept getting angrier and angrier because no one would take the cat.. This feeling stuck with me the whole day in my brain felt foggy because of it.
I would have to say MS really sucks but it is never boring. Always something new to tackle.

Silly Kitty

It's sort of funny how many ideas I have for my blog when I'm in bed either before I go to sleep or if I'm awake before my wife gets me up. By the time I'm out here at my PC I have forgotten what they were. Believe me, they were great ideas. I think my ideas would've made America great again but I've forgotten what they were.
Today I'll talk about Macy. Since I'm no longer able to brush her or scratch her ears and chin she does not have much time to spend with me. She had become more my wife's cat unless Tom is around and then she pesters him to death. I have noticed though, that she gives me a little sugar once or twice a week. One day last week she got in my lap and slept for a couple hours. Sunday night she slept between my knees pretty much all night. Sometimes she sleeps on my arm for a while and sometimes she comes up by my head. When she lays by my head she usually licks my hair or my sideburns. When she lays there she purrs and purrs. To be honest it was her purr that won me over years ago. My wife says to give me a little attention now and then so that I know she still loves me. The cat I mean.
This one of things I have thought of to post on. Hopefully some of the other ones will come back to me and I can post them. I've never had a steel trap mind but my forgetting is getting lots worse. I know some of that comes with age but MS is multiplying that.

A murder I have thought about for decades.

This has been on my mind a lot lately. Recently my son downloaded the Fleetwood Mac album Tusk for me. I had this as a record many years ago and I remember listening to it one rainy night not long after my wife and I moved into our 1st house. Then on the news we had heard about a young girl being murdered and a mall parking lot. They have never solved the murder, her name was Michelle Martinko. She was a freshman when I was a senior and so she went to junior high while I was in high school. I'd never seen her until that night on the news. She was very pretty and had hair that rivaled Farrah Fawcett's. It was that event that made me realize that evil existed in our world. Up until then I always thought things progressed rather normally. The rainy night and listening to Fleetwood Mac always reminds me of that event.
One of the strange things is that I always suspected one of my classmates had done it. I had no proof or evidence other than these 3 things which would not have meant anything to the case: 1)The artist sketch the police published in the paper had hair that looked just like my classmate's. The face in the artist conception could've been anybody. 2)When we were in school this classmate was known for his inability to talk to women but there was one cheerleader he sort of stalked. Later on I heard stories that he was guilty of at least one date rape. There was also a story of him attempting a date rape and the girl getting away. 3)The final fact that convinced me was that he lived and grew up one or 2 houses away from this girl. If he was obsessed with her, I could see him committing the crime. Of course none of this was "evidence" and I always assumed the police were competent enough to consider him as a person of interest. That was in the late 70's and the crime was never solved.
Since the crime the parents have been in the paper a number of times expressing a desire to still have the crime solved. Since that time the mother has passed away and I'm not sure about the father. This Fleetwood Mac album and especially the song Sarah remind me of that time even after all these years. It's been decades since I've seen this classmate and I heard he moved to the East Coast after college. Everything I know I heard secondhand or just thought possible. I wish the perpetrator would acknowledge the crime. Even a deathbed confession would be good.
If this were a TV show some vigilante would kidnap the suspect and somehow find a truth serum and administer it. Of course TV shows are not real and imagined things are much easier than they are in real life.