Not doing so good driving my chair

I posted that Saturday was able to drive my chair quite a bit, in my opinion. I'm trying not to be disappointed but have not had much success since last Saturday. I have been trying to drive a little bit each morning but today was a complete fail. I suppose it could be baby steps and hopefully I improve each week. This morning I felt like I could drive in the house but ended up not being able to. I'm trying to practice lifting my right hand up because that is a key to getting my hand correctly on the joystick. This has not gone the best, but I'm going to keep trying. Please remember that I am a very stubborn person about pushing myself. Hopefully I'll have better news to report next week.
I think Atlas can sense my disappointment. Last night he laid with his head on my shoulder for over an hour until my wife came to bed. Usually he lays there for about 10 minutes and then puts his head down at the foot of the bed or leaves and comes out to be with my wife. Maybe he sensed I needed some special doggie affection. I know he is very sensitive dog and maybe that explains it.

More on the dog exhibits

this is another post about the dog exhibition we went to on Saturday. About my driving my chair – it went better than I thought and when we were done looking at the exhibitions I drove back into the van and that was about it for what my hand was up to. Still going to be a while before I have confidence enough to drive without my wife there to be my safety person. I thought I would share about some of the dogs we saw. It was quite a menagerie and way more fun than I was expecting.
The 1st row of exhibitions only had a booth with greyhounds as their emphasis. I can't say there were very interesting and to me there kind of strange looking dogs so I didn't stop there. They had 3 or 4 but I've never thought of them as a pet for me though I hear their good pets. It the end of that row I mentioned a group of people and dogs. This was pretty interesting. There was one dog there it was part border collie and maybe part Australian Shepherd. It wasn't very cute was when it's color and hair were just beautiful. The owner was quite fond of his dog. That was about the time lady with the snake came over and I notice that what I thought was a fenced area with puppies was really a fenced area with a skunk. So I just kept going. And up talking to a lady about dog Mills but so far no dogs or puppies to pick us out. We kept going down the line of exhibitions and our next stop was at the exhibition for the obstacle course and the flyball course. My wife knows one of the people there and she and her dogs came to Atlas's birthday party so we stopped there. I met a guy in went to Jack Russell Terriers, which I tend to really like, and we discussed having a working dog versus a dog as a pet. I told him I thought Terriers needed work to do but they would get bored. He introduced me to one of his and said that this one like to sleep all day and was a kind of a cuddler so I shouldn't give up on them.
We got to see one of the dogs we knew that was a border collie named Storm. Storm did the obstacle course and I was pretty impressed. It was kind of drizzling then so there was no flyball while was wrestling. I think it was about then that I noticed that Cedar Valley humane shelter at a booth so we went down there. I'm not sure if that was a smart move were not. They had a very cute daschound mix that was very friendly and very cute. 7 months old and lady put her on my lap table and we got acquainted. Course I wanted to take her home with lady told us that her sibling was there and they were a bonded pair. If you take one you have to take the other. I still can't let the dog out to go to the bathroom so I can have one right now so those 2 were out of convention.
Before we left I notice this pitbull looking dog that had a vest on this said adopt me. I'm not a real pitbull lover but I thought this one was around a lot of people so with was pretty safe. I drove over and it turned out she was a very sweet dog and very affectionate. Her head was huge and she plopped it on my lap table like she was cuddling with me. What was really funny is that Atlas got jealous and had to come over and make sure I was okay and that I didn't find a dog I like better than him. I've never seen jealous over me before. He and the pitbull really like each other and I think they want to play but both were on leashes so they couldn't.
Since it was starting to drizzle I was able to drive my chair back to the van and inside. Why was there my wife went to get me some lunch because they had some wonderful smelling hamburgers cooking. She brought them back around the time the flyball started so I missed that. It was a little never that I expected and would be fun to go watch a competition sometime.
While we were in the van I kept seeing a lady with the tiniest little dog on a leash. Everywhere she went people wanted to pet the dog and it was very friendly. After missing flyball we said goodbye to the people my wife knows and we ended up crossing paths with that little dog and the lady. I think she said it was either chiauau or mix. It was so tiny but was 5 years old. Very cute and she said it on my lap table and I made a new friend. It was her dog so it was not up for adoption. If I had that dog I'd be afraid of our neighborhood owls carrying it off. The owls around here are big enough that we have heard them carry off rabbits squealing.
One another cute dog we saw was a little mostly black German short hair. It was very shy and the girl who owned it was carrying it around with its head on her shoulder. It was so cute and reminded me of when Atlas was a puppy and I could hold him like a baby. It seems like my wife's biggest worry when I got away from where was that I would get a dog without her knowing till we were home. That didn't happen and so I will keep whining about needing a dog. Really I just want to be a full to scratch my kitty's chin again so she cuddles with me. I also I will be able to throw the ball for Atlas. If I get enough use back I won't need a new pet. Oh that's the end of this story thank you so much for reading my blog..

Phil on the loose

On Saturday I reported that I could drive my chair. Today I will mention some particulars that made it possible. Since I was able to move my right arm in bed I wanted to try drive my chair. My wife and I decided to go to a dog exhibition that was across town at a grocery store parking lot. There was going to be an obstacle course and a flyball demonstration. My wife knew one of the ladies was involved in that. There were also other shelters and such with exhibitions. My wife thinks I wanted to go there are so I can find a puppy or dog. I have to admit that the potential did exist that was not really my plan. I tend to think that the best case is not me picking out a dog but a dog picking out us.
After my wife got me ready to go I asked if I can try drive my chair. I thought I would just make it into the other room. She had to put my right hand on the control and away I went. Turning right is always been the hardest and there was a right turn to get to the door out to the garage. I had enough control that this worked out and I ended up driving all the way out the garage door down my ramp over to the van and up into the ramp. I was also able to come to a stop without her pulling my hand off the joystick. I would not try driving it without her there to back me up and stop me if I couldn't stop. Ended up being able to turn around in the van and drive my chair in the lock. After admit I was amazed because it is been 9 months since I've been able to do that.
And will we got to the exhibit I could lift my hand up on the controls joystick and I said let me try driving out of the van. I was able to back out, turn and go down the ramp. I was on a roll and he stayed close to her so she could stop me if I couldn't stop. We started out looking at each exhibit and she was talking to someone and I just kept going to see the artwork done by a chainsaw artist. It kind of worried or that I drove ahead without her but I was very happy that I had a tiny bit of independence.
We got to the end of that role of exhibitions and there was a large group of people and their dogs grouped up. I came to a stop and told my wife that I didn't know if I can make it through the crowd without hitting somebody and she was going to help me except that an opening showed up in the crowd and I drove in. I thought there were dogs or puppies to look at for adoption but this exhibition had a snake in a skunk. I'm not a big fan of snakes and wasn't interested in the skunk so I drove off and went down the other side of the row.
One lady I talked to was with a group that is trying to get more inspections or shutting down entirely dog Mills in Iowa. There are a lot of them and they treat the mothers very cruelly. Is a problem that needs addressing but the government claims their understaffed and so these groups keep manufacturing dogs and son them to pet stores. There seems to be fraud involved because they will have a crossbreed dog but marketed as a purebred and charge exorbitant prices. I don't see how people can be so cruel especially in the mother dogs were often kept in cages and never let out. They get letter after letter from them and when they're done with them they may dump them somewhere or take them to a shelter and leave them.
Well I will post more on our visit to the dog exhibition later. Spoiler alert – I did not come home with the dog.

Psalm 23

Below is a copy of Psalm 23 from the King James version. I'm sure it is the most well-known Psalm and probably the most well-known Bible section. Many of found this comforting when going through a trial and others about it comforting when facing the passing from this world to the next. What often is not thought of is the words in Psalm 22. Psalm 22 starts out with "my God my God why has thou forsaken me". You see it is Jesus being on the cross and suffering the wrath of God for us, they forsaken by his father, that gives us the avenue to have Jesus become art shepherd. I believe it is a tad book of John it talks about Jesus is the good Shepherd who lay down his life for his sheep.

1 The Lord is my shepherd; I shall not want.
2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.
3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.

I hope this little dialogue gives you something to think about. While Jesus was forsaken on the cross you was also paying for my sins and for the sins of all who would believe on him. Take care dear reader!

Ocrevus 2nd infusion – encouraging

I had my second infusion of Ocrevus yesterday. It was very similar to the 1st infusion. The Benadryl made me sleepy, and during the infusion nothing much happened just like last time. Got done around 2 PM and we came home. This infusion was on a Friday though while the last one was on a Thursday. So we planned to go out to listen to music since it's really the start of the weekend. Last time I got a weird headache in my eyes and this time was no different. Last infusion I just rested went to bed early. This time we went to music and the jostling car ride and the music increased my headache so was quite a bit worse and last time. I took couple more Advil and that seem to help except then my stomach started to feel a little queasy. I was loading up on carbohydrates and I think that didn't help my stomach much. I made it almost to the end of the music and we came home and I went to bed. Woke up this morning with no headache so I think I really should just rest after the day of the infusion. I'm going to miss going out because the outdoor music season is almost over.
Last night I did my usual stretches before bed to stretch my shoulders out because I tightened up during the day. I recline my chair all the way back and then have my wife pull my arms out above my head. That help stretch the shoulders and I usually can't move them from that position. Last night I could lift a both my arms up and put them in my lap. This totally surprised me because I haven't been able to do my right arm since last December and it has been years since I could lift my left arm back over. Was my new drug working or was this just a fluke? This morning in bed I tried moving my right arm away from my body and stretching it in that direction. I haven't been able to do that since last December. I was able to move about 20° away from my body which was kind of encouraging.
When we got up, we decided to go to a dog function where they were having a number of booths and some demonstrations. I found I could run the tilt joystick fairly easily and I asked my wife to let me try driving my chair. I did not expect much but wanted to try. And I'm driving all the way out into the garage, into the van and into the locking mechanism. I can't say it was easy but I was able to do it with total concentration. Then when we got to the event I drove my chair out of the van and all around the demonstrations. After one pass through, my arm and hand were too tired and she had to take over but I had done more today than I've done since last fall. Again is this the new drug or just a temporary fluke? Over the course of many years some of my functions have come and gone in minor degrees. I hope this is just a start and that over time I will get more use out of my right hand. When we got home from the dog event (my wife wouldn't let me bring home a dog though) it took a long time and a lot of rests, but I eventually drove my chair into the house but then my right hand was done.
Of course each day I hope to get better and who knows where it will end. Of course I can hape and dream and try real hard but who knows what the end result will be. The doctors don't know, the drug maker doesn't know, but it offers the first opportunity for my type of MS and it seems to be getting good reports.
I have to give a shout out to my neurologist nurse who has worked tirelessly to get me to this point. She has coordinated everything including applying for the drug manufacturer to supply the drug for free. It is normally $65,000 and insurance does not have it on their books yet because it is new and they don't like to pay for anything less somebody makes them. They are also supplying the next one and I will get in March. After that who knows if insurance will cover it or not. I understand that some states Wellmark covers it and in other states no way. It is very easy to become hateful toward insurance companies. Maybe they'll surprise me in the future. I look forward to gaining the use of my right hand and hope this is not a fluke. It would be hard to deal with more disappointment.
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Atlas and Macy Update August 2017

A little over a week ago Macy (a.k.a. mule kitty) started sleeping on the bed either between our heads or between my knees. Sometimes Atlas would have his head up near ours and she would just quietly wait her turn. She would lay with her head on my shoulder and start purring and go to sleep. This went on for about 10 days and it ended with Atlas and Macy actually coming in contact with each other. This photo shows a weekend morning or they shared and she let him be in contact with her for a little while before she moved over. We thought oh good we turned a corner.
Silly us, since the photo and the 10 days straight of her being on the bed at night she is been incommunicado. Some days I don't even know if I have a cat. She must've realize that she was starting to act in a reasonable manner and the cat union called her and said this is not acceptable, start acting like a cat again. I see her once in a while when she goes to eat. I hear in the litter box but then she won't get on the bed afterwords. She quit coming out and seeing Matt at lunch time but she still comes and pesters Janette until she brushes her each night. It's taken 3 years to get to this point. Maybe me another 3 before their cuddle pals.
One of my big hopes that this new MS drug is I'll get the use of my right hand back so I can scratch the kitty so that she likes me again. It would also be great if I could throw the ball for Atlas. I started having him dropping his ball on my lap table and then jumping up with his feet on my arm rest and getting it. He seems like the game. Well my 2nd infusion is Friday so maybe in a few months I'll get some use back. I can only hope. I guess hope is a good thing but hope unrealized usually turns to discouragement. I try not to get my hopes up.

Infusion Update and Miscellaneous

Tomorrow will make 2 weeks since I had my 1st infusion of Ocrevus. I don't think there is been any improvement in my functionality but it is no worse than it was 2 weeks ago. My 2nd infusion will be Friday. Tomorrow I get a hepatitis B booster shot. It was up to me I would say I've had enough vaccinations. I've had one hepatitis B vaccine and one booster. I told my wife I was fine with skipping the last 2 booster shots, one tomorrow and another in 6 months. Of course I was overruled and tomorrow I get the vaccine booster. It's pretty frustrating all glass and getting into the van and driving downtown, getting into that office, waiting for the room to open, then all the reverse after the vaccination that takes about 30 seconds. Seems to me they could just mail it here and she could give it to me. All they do is jam it into my arm and pushed the plunger down. They don't look for a vein nor any special thing so it seems like anybody could do it. We used to give our horse its own vaccines so it's not like we don't know how.
So I'm going to be a good boy and do what my wife tells me, but I will be whining about it the whole time. Now I see why kids get candy bars in the grocery store. Maybe she'll take me out for cupcake afterwards. I always used to like salty snacks but I've come to like sugary ones more. Donuts, cupcakes, pancakes, Kit Kat's are my favorites now. My favorite probably is blueberry pancakes with sugar and cinnamon on them. Now I'm making myself hungry.
I'm sure I will be posting Friday since it will be a long day at the hospital the infusion. I find it hard to post on the weekends because I'm not here by myself and can use my voice software. Maybe I'll post tomorrow, I can't really tell until I get up and see how I feel. I usually don't feel bad just unmotivated and lazy. So the days I don't post don't worry about me I'm fine just lazy. It's a real chore to make corrections with this silly software. When I said donuts earlier the voice software put in gonads instead. I'm really glad I caught that mistake before I posted it or you guys would think there is something seriously wrong with me mentally not just physically!

Confederate Monuments

I think I have a interesting perspective about Confederate monuments. I suggest all of them that are in existence above the Mason-Dixon line be destroyed. Once in southern territories I think I view it differently and here is why:
In 1995 I started a new job and they sent me to Raleigh North Carolina for some training. I stayed in the downtown Holiday Inn and did not have a rental car. The first aspect of my attitude was developed when I took a shuttle ride from the airport located near the midpoint between Duke and North Carolina State University's. The driver was a very friendly black man we talked the whole way. He was a North Carolina state fan and I told him I hated Duke but thought the world of North Carolina. He said when either of those 3 teams played each other the whole state got involved and there was a unending line of cars adding to the University where the game was. As we drove to the hotel our conversation ran out and I just look out the windows. It was pine forest as far as I could see. I felt like I could see the ghosts the runaway slaves were tracked down by men in white robes and torches. Was quite sobering. It would've been very difficult to get away from your slave owner in that setting.
We had very long lunch periods at this training and we were only a few blocks from downtown Raleigh. I took a walk one day and it was quite interesting passing buildings that were over 200 years. When I got to downtown there was a courthouse in square. Walk around the square and was amazed at the number of Confederate "war heroes" that abounded. I imagine if I were black I would find these very intimidating and make me feel as if I was not welcome there.
So my suggestion for statues below the Mason-Dixon line would be for one to be a mounted, fairly large, next to it a reminder to everyone that the South lost the war! I traveled for work quite often was in Virginia. One weekend I stayed over and traveled to Virginia. I went to the Museum of the Confederacy. It was quite interesting. It is very clear from the displays that South Carolina led the south end of the war, Virginia was the main battlefield and suffered the most damage North Carolina was the one that sent the most soldiers was the last to surrender. I then toured Jefferson Davis's home while he was president of the Confederacy. There was a very attractive college-aged southern lady and she gave the tour. It was very clear from her presentation that to her the war was not over yet and she hated the Yankees. One of the times I was at a vendor one of the workers I came in brief contact with had a sign in his toolbox that showed a man hunting deer and the caption was "I'd rather be hunting Yankees". I did not really take it personally even though I am a Yankee for the most part, though my mother was from Missouri and very southern. It was clear from my visits that many of them were brought up to think there was still a war on. So I think if we put a large stone pillar or gravestone shape that said "the South lost the war, get over it" it would be very good in my opinion.
Raising my children, we lived in a very small town in eastern Iowa. It was less than 500 people but had a school that went from kindergarten to high school. Every day the school parking was full of cars of students. There was one in particular that was a pickup truck and on the side of the bed it put a very very large Confederate flag. It drove around a lot after school. One day I was going for a walk and that truck came roaring by. I imagine if I had been a black man I might have bordered on terror and worry that the truck full of white "rednecks" might stop and hassle or even assault me. I'm sure that these young fellows did not really feel that way but just wanted to let everyone know that they were "rebels" and lean toward being bad boys. They often wore shirts with the sleeve toward off and they were truly redneck hicks. I doubt that any of them really grasp the significance of the rebel flag but the meeting would not be lost on people of color. I would be happy if that flag and the Nazi flag were banned. We live in a free country but remember "stupid is as stupid does".
I also have an opinion on the group "black lives matter" that will be for another day.

Eclipse – seen one you see them all

I will assume you have heard there will be a total eclipse of the sun on Friday early afternoon. Time will all day I have the TV on and have a muted so I can use my voice software. I notice that one of the biggest things in the world right now is the eclipse and getting glasses to watch it. It seemed pretty hyped up so I assume you've heard of it.
The last one was in 1979 and I remember it. It was pretty hyped up then and I were 2 nights so I can see it during the day. I would have to say it was one of the most boring things I've been involved in. Pretty close to watching paint dry or grass grow. It took so long for the moon to cover the sun I was pretty much bored out of my mind. Back then we just squinted and didn't have special glasses. I probably saved my eyes because I really didn't look at too much. It was pretty cool when it got dark during the day. It had an ominous feeling to it next day watching the eclipse, Boring.
If you are someone who was off of work and has a special glasses and plan to watch the eclipse have one suggestion. Imbibe liberal amount of alcohol and find a designated driver. If you're going to watch a rooftop somewhere around in the open please use sunscreen. Keep in mind that I am old enough to have seen the last one him tried to share the fruit of my experience!

Weird Wednesday – this one Trumps them all

The other day our president, Donald Trump, condemned the actions of some a groups which included white supremacists, Nazis and the KKK. It seemed very late to respond and seemed like he was forced to buy his staff. Nevertheless he did condemn them. Then later I find out that he also said that it was both sides fault!
You gotta be kidding me! The people were injured and the one girl who was killed by the lunatic driver who drove into a crowd of "the other side" must have deserved it according to our president. What were they doing out there protesting? Everyone should just accept these a groups and stay away. If you protest them according to Donald Trump you're adding to the problem.
I guess he thinks it's black people's fault that they were out there when the white supremacist came through. Also there were white people protesting against they groups long side to black people. The audacity of these people to think that opposing a group was proper.
I am afraid our country is being run by either a lunatic, moron or someone who suffers from a disease either a medical condition or mental condition. Is her some weight and get some help? I'm sure he can afford the medical care he might require. I would say reason was Trumped by one of the strangest things I have ever witnessed in my life.

Atlas the Wonder Dog!

Yesterday the pool was closed to people and open to dogs. My wife signed Atlas up. He loved it. He loved the water and just jumped right in after one of the balls the Matt threw. There were also dozens of balls that other dogs left and sometimes he had a problem deciding which one he wanted. Sometimes he would get 2 of them in his mouth. This photo doesn't do the setting justice. There were dogs everywhere and most were in the shallow end. There were a bunch of dogs that were just running around in a pack. The staff tried to break them up because they could run into problems running into people running on the cement.
I sat outside the fence and watched and was very entertained. It was a good thing Atlas had on the distinctive collar because there were so many black labs it would've been hard to figure out which one he was. There were a bunch of golden retrievers that wouldn't get in the water. One of them is running around the pool and was as dry as could be. Another one this lady kept trying to shove it into the water and it did not want to go but she finally got in the water. It got right out. I thought she was in a fall it trying to do that.
In today's newspaper, Cedar Rapids Gazette, there was a photo of Atlas similar to this one. Now he is a celebrity! It was sure an enjoyable event.

New medication expectations

Have mentioned that I'm trying not to get my hopes up about this new medication? One worry that has passed is reactions the actual infusion. It went pretty well. Now my expectations based on how I understand this drug to work is that right away it will work to prevent my MS from advancing. The 3 areas that made me feel it was worth trying this were how MS affects my diaphragm, breathing, holding my head up (neck strength) as well as a tiny bit of strength that I still have in my right hand.
My legs and hips have not worked for years. For a few years now my left hand has been useless and a few years ago I found my trunk (stomach and back muscles) lost the ability to lift myself up if I tipped over at the waist. I now have straps that go around my shoulders to hold me into the seat of my chair. I also have tilt and recline control in my chair. I can still get my right hand's little finger around the seat recline control but sometimes it takes 10 to 15 mins to slowly get my arm and hand over. I found that when I yawn or cough my arms raise up and I tried to synchronize using my recline joystick with those 2 things. Late in the day though, I'm no longer able to do this and have my wife lean me back when I need to change positions.
So my first thought is that these effects will stop advancing and I can keep what little I have. My understanding is that my body will re-myelinate to a certain extent if the autoimmune system is prevented from doing its damage. So my long-term hope is that I get the use of my right hand back and I'm able to drive my chair again. Of all the things I've lost this one has been the hardest to accept. One thing I want to say about MS is it is often said it's an autoimmune disorder. That's slightly off-base because what it really is is that the blood/brain barrier allows the immune cells to enter and attack the myelin sheath on the nerves. This is the real problem because the immune system should not be allowed into the brain and somehow these cells make it through and damage one's own body. So what this new drug does is it either eliminates or destroys one type of immune cells called the B cells. There is a drug called Tysabri that does similar things only to the T cells of the immune system. Testing of this drug on my type of MS as been fruitless. So far this new drug Ocrevus is the only one that has been effective for my type and is FDA approved for my type of MS.
So my long-term hope is that I get some remyelination back and I can use my right hand again. Course it is possible that I'll get more than that but of course no one knows and it will be what it will be.

Cats are strange but very interesting

Macy must've crossed some emotional threshold. She comes in not long after my wife comes to bad and jumped up on me walking by Atlas and stands between our heads. Sometimes she binds a spot to lay there and then she ends up sleeping with her head on my shoulder. Sometimes she stands there and looks around and then goes back and sleeps in a little nest she makes between my knees. The dog just leaves her alone when she comes up now. Occasionally you will try to lick her but the only licks her once and then leaves her alone.
Sometimes Atlas sleeps with his head between our shoulders of most of the time he sleeps with his head on my ankle. I find this contact with animals very comforting. I think they like sleeping on me because I can't move. My wife moves around too much and the cat especially finds that annoying. We don't want to annoy the kitty, queen.
When my wife gets up they both follow her to see what's going on and probably to get food. Occasionally they come back but usually that's it and I'm on my own. I doubt if Macy will ever come up with Atlas because he moves around too much. When we're in the living room and she is laying on the couch and he starts barking at things like the mailman, she gives him the stink eye and occasionally leaves the room.

Ocrevus – 1st infusion

I had my first infusion yesterday. We went to a local hospital since I am in a wheelchair the doctor thought it best to go to the infusion center at St. Luke's Hospital. The staff was fantastic. Probably helped that there were only 2 or 3 people there. We got there by 9 and that's when they start getting things ready. I guess they don't want to start until they know you're coming for sure. By 10 o'clock I was on the liquid IV and they gave me steroids, Benadryl and 2 Tylenol tablets. These were to help avoid reactions to the drug. Everything went very smoothly and they have a slow drip at the beginning and it speeds up every half hour until it's done. Then they wait an hour after the drug is done and have a liquid IV drip to make sure you're hydrated on the way for any side effects.
I had 3 different nurses but one main one. She came in every half an hour checked my blood pressure. It was a little high when we started and went down each time she checked it. I told her it was high because of my wife's driving. We all laughed.
It was a long day for me since I had to stay in my chair for the infusion. I had no reactions to the drug while I was there. That night I had a slight reaction, was a strange headache behind my eyes and just the back of my head. I used to get migraines and this was nowhere near as painful. It was a small headache in magnitude so I just ignored it until bedtime. I went to bed a little earlier than usual because I got up so early to be at the hospital at 9. That evening my left arm, the one the infusion went into, ached a little. It wasn't very bad and the Tylenol took care of it.
When I go to bed I watch television on my iPhone and my PC until my wife comes to bed. And then I read a Kindle book and I can turn pages with my Smyle Mouse and this little LED that I have. I still had the headache and so I found reading little bit of a strain and just closed my eyes and eventually I fell asleep. This morning I woke up and no more headache and no more arm pain.
On the way to the hospital I got a donut for breakfast I held off on the coffee until I asked the nurses about it. She said no problem so I pretty much ate and drank as normal as possible. The hospital gave me lunch and I had a chicken sandwich with fries and a brownie for dessert. I was glad I had no nausea at the hospital or at home. Overall I would say it was a good experience and the problems were tiny at most.

Ocrevus update

I had my 1st infusion of the new MS drug this morning. I had to get up at 7:30 AM, can you believe it. Pretty rough duty. They started out with Benadryl, steroids and Tylenol to prevent drug reaction. They started out the infusion of the drug and then speeded up each half hour still is done. We started the Benadryl and stuff a little after 10. When we get there takes a while for them to order the drug and get a brought upstairs. That's why we didn't start till around 10. Then around 11 they started the MS drug. No reactions at the hospital and I'm hoping no reactions at home. I did fall asleep a few times and I missed 12 of Janette sisters came up to visit. I woke up before they left so I got to see them. I weathered doing it without Atlas for all those hours. How tough am I?
Next infusion is in about 2 weeks on a Friday. The next one after that will be in about 6 months. This simplified version of our works is the one I can sort of understand. This drug attaches itself to one component of the autoimmune system called B cells. I'm not sure if it kills them or drag them out of my body kicking and screaming but either way takes 6 to 9 months for them to regenerate to previous levels. That is why the six-month gap between transfusions.
They split the 1st one up into parts to make sure reaction to the drug are not too extreme. So everything went pretty well I listen to music and slept. Thank you all for your thoughts and prayers and summation point

Slightly Weird Wednesday

Last week I started a weird Wednesday post. I suppose I should continue that line of thinking. One thing I'm finding very weird is that my wife and I have switched to roles in a number of things. One of them is the temperature sensitivity, sort of. It used to be she was always cold. I would want the windows open and the ceiling fans on or I would overheat. We could never find a comfortable situation for both of us. This continued even when I had MS. There would be many evenings I would get so warm that I would have to take off my shirt till I cooled down. This change and I started taking a medication because of my arm, neck and shoulders spasming.
One night this got so bad her and Matt had to take we to the ER and they put me on a Valium drip. This fixed the problem and so since that night I've been on a medication because the spasms can become uncontrollable. The side effect of this is that my muscles don't get much use and I find I'm cold all the time. Now we have switched roles she is always wanting to open the windows or turn the fan up. We can't find a comfortable temperature to set the AC at either. Used to be when we went to outdoor music if it was about 68° I was comfortable and she would be wanting a sweatshirt. Last week we went to music and it got down to 70°. I was the one who needed the sweatshirt. I suppose the only good thing that has come out of this is I can be outside in the low 80's and as long as I stay out of the sun I am pretty comfortable. One thing about MS seems to be that nothing stays the same and that things are always changing. Adapting is now our middle names!

Getting things fixed

For the last few weeks I've been nearing a little chirping noise like a truck makes when it is backing up only the chirps are spread out over quite a bit of time. I just assumed it was a symptom of MS and I really wasn't hearing anything either that or the neighbors were doing something that made a noise. my wife figured out that the garage door opener as a backup battery and it needed replaced. The chirping was to let you know it was time to replace the battery. I'm glad I wasn't just hearing things that weren't there.
She looked it up online and ordered a replacement battery. When they came in she swapped it out. I guess my wife is turned into our handyman. We also had a fan switch in our ceiling fan break for the 2nd time. Her and Matt replace that yesterday. Thank you both.
Saturday night and Sunday night my breathing machine would not work. No matter what my wife did it kept alarming that there was something wrong with the airstream. Today she called the breathing person and she came out right away. She said they were having trouble with the mask I would using she brought a different one. Is about the same except is much more comfortable and as an extra strap to help hold it in place. She went back and looked it up to the machine. Matt drove me back because he was here at the same time. Even though the mask fit better still did not work. She took off the hepa filter and it worked fine. She looked at the filter and found that there was moisture in it and that moisture prevented air from going past. I guess we will have to keep a better eye on that filter. I thought they would last a month or so but this one would just 2 weeks. As always with MS "it is what it is". There doesn't seem to be a "should" that goes with this disease.
So I've been pretty well taken care of lately and it's nice to know that things around the house can get fixed without me. I try to stay out of it because I usually just distract whoever is working. This is really hard on me because I've been the fix a guy for so many years. Is strange to think that I just have to grow lazier!

Pet breakthrough?

I don't think anybody would argue with this statement – cats are idiosyncratic (strange). I think their ever-changing behavior is what makes them so interesting. I love dogs but for years dogs and really like me. My 1st pet was a cat so I guess a big part of me is a cat person but I also had an Irish setter that I loved and miss terribly. Until Atlas came along I missed my Irish setter so much that I never really wanted another dog but he has been my puppy buddy. He comes in and says night night and throws his head down on me for a hug. Some nights he sleeps there on my shoulder for over an hour before he goes back to see my wife or she comes to bed and he has to move. She is asked me if I want her to find somewhere else to sleep so he can stay on my shoulder but I do like her more than I like the dog.
So this post started out with  cats and I digressed so back to  my cat, Macy. As I mentioned she has lost interest in me since my MS is progressed and I can no longer brush her or scratch her chin or ears. Strangely last 2 nights she is gotten up on the bed and is been pretty much attached to me. Last night was the most unique experience with her and Atlas to date. He had his head on my right arm and my PC table and is had meant the cat could not walk up and laid down between my wife and I. Have faltered jump up on my legs and start walking up toward our heads. She stopped when she got to the dog's head (his head is about the same size as she is) she stopped and they sniffed each other which I don't think it's ever happened. Then the dog lifted his head out of the way so she could keep going between my wife and my heads. After she passed you put his head back where it was.
As Macy found a way to communicate and has Atlas been trained to read the cat's nonverbal instructions? Only time will tell. It was amazing to have the cat 2 nights in a row since it's been over a week. I'm pretty sure she just want to make sure that we never know what she's going to do next. Sometimes we call her mule kitty. But when she cuddles up on me and purrs it melts my heart.

Mr. Barkey

A week ago Atlas seemed pretty bummed. Pretty sure he realized that Tom is not golfing or at some Army training thing. He was pouty all week and rarely barked at noises outside. He spent the week pouting on the couch and was only lively when my wife came home.
This week he seemed to pop out of it and turned into Barkey McBarkerson. All week he was barking at everything and anything he heard. There were a lot of things that I never figured out what he was barking at. I would tell him hush and he would come and lay beside me but he would still keep growling and barking even though he put himself in timeout. Usually when I told him to go wait at the door he would go and sit by the door and wait for our company or my wife to get home. Last week he was growling and barking at everybody including my wife.
Today, Saturday, will he was laying on the couch and my wife was asleep on the couch. Next-door they're having a baby shower and a bunch of people were walking past our house, parking in front of our house and even some kids were playing and ran into our driveway to get their Frisbee. At first he started growling at them and my wife told him be quiet. Then she would tell him to get down off the couch but he kept growling and barking. Eventually he was on the couch and woke her up with this growling and barking and all she did was give them a little tap on the nose and tell them to be quiet. Not another peep out of him even though people were going by in our yard. I was astounded. He used to mind me when I could drive my chair over to him and lean over and scold him right by him. Now I can't drive it and he just ignores me. He still gets off the couch when he barks and puts himself in timeout but then keep barking. Usually he's a good dog for my wife but he kind of ignores me anymore. He still knows I'm good for a treat or two during the day but still likes to bark at stuff. It's pretty hard to make a dog not be a dog. Other than his barking is a perfect dog almost all the time.
One day he got into my garbage can by my PC table and chewed on a paper plate. When my wife was calling him he would just close his eyes as if "if I can see her she can't see me" it was hilarious. First scolding worked and he never got in my garbage again. I'm pretty sure he's grandma's puppy! That is when Tom's not around.

Lesson from Psalm 25

I have been reading in the book of Psalms or more correctly I have been having them read to be by my computer. Sometimes I read along sometimes I don't. The other day I was reading Psalm 25 and I remembered of verse that jumped out at me many years ago. It was this verse "11 For thy name's sake, O Lord, pardon mine iniquity; for it is great." This verse is really staggering when you consider it and I think you're really foreshadowed grace with that were allowed after the death of Christ. David was a man after God's own heart it says in another place in the Bible. David understood God's heart and that made a connection with God the couldn't be broken. Not by David's sin which a number of times was very great in the eyes of people and God. It's very humbling to come to the Lord with the confession that I need your pardon because my sin is so great. How unlike human behavior is this? We think we have to work to gain God's pardon for David new the only way was to throw himself on God's mercy and grace. That's true today yesterday and forever!
I am having a bad eyesight day so please forgive the typos in this because the text too small for me to read and correct. Thank you again dear reader.

Weird Wednesday post a day late

Some people post throwback Thursdays. I got the idea yesterday for Weird Wednesdays. I would've posted that yesterday but I had to post the Macy and Atlas one while it was still fresh my mind. So here's yesterday's post:
On weird Wednesday I saw a posting on Facebook that showed a man and a woman back to back in a bed both of them awake. Is captioned with what she's thinking and then what he's thinking. She's thinking "he's thinking about another woman". He's wondering about why Buzz Light Year in toy story freezes whenever there's a human around but doesn't acknowledge that he is a toy. This made me think about myself. Also The TV show the Big Bang Theory makes me think it's okay to be a little bit weird.
There's about 2 nights a month that I have trouble sleeping. Really don't know why when I wake up and can't sleep I often wonder about imaginary characters having MS like mine. I wonder if I was bitten by a Wolfman and became a Wolfman would I be a Wolfman with MS or with the Wolfman override this disease? If I knew the answer I might choose to be a Wolfman if I could. Nothing insane about these things, right? I have always been terrified of vampires due to the TV show "Night Stalker" that was on in the 70s. These shows terrified me and gave me nightmares. Now I wonder if I were a vampire with MS would the vampire powers overcome the MS or would I be a paralyzed vampire? I hate vampires and would never choose to be one even have a cured my MS.
I hate MS but would have to draw the line and being a vampire. A Wolfman I wouldn't be so bad. I would want to be a Wolfman that only ate animals like deer or rabbits. I assume I would have enough Wolfman control that I wouldn't attack people. On 2nd thought maybe there's a couple I can think of that would deserve this.
MS has taken away my libido and I remember something the ex-president of the company I worked at would say. He was in his late 60s early 70s and he would say "I still look at pretty girls but I don't remember why" now I know what he means and is pretty funny. Oh well, enough of my ramblings.

Macy and Atlas stories

My wife took Macy for her yearly vet check up and shots. When my wife got to the vet there were people sealing the parking lot with that spray on black stuff. Of course this silly cat bring down at the noise these machines were making and pushed the door open on her carrier. Either she is very's very strong or the door was in last all the way. My wife caught her when she was almost all the way out and was holding her in an awkward way but she did manage to get her back in the carrier and then into the veterinarian's office. My wife imagined that if she had gotten away she would've ran out into the traffic on our busy 1st Avenue where the veterinarian is located. She was filled with thoughts of "how my going to tell Phil his cat got ran over". I'm not sure how I would've taken it. I love my kitty but she is part mule and ignores me all the time. Yesterday I tried getting her attention but she refused to look at me. I kept it up and then she started scowling with her ears back but still wouldn't look at me. Cats are strange creatures. As part of why people like them, no 2 days or hours are the same.
Her checkup went pretty well. He lost a pound over the last year. She is more active now and down to 9 pounds. She was 12 pounds we got her 6 years ago. The average cat weighs 8 to 10 pounds so her 9 pounds is a good number for her. We think the dog being here keeps her a little more active because she has to tease him part of the day. This leads into my other story about her and Atlas.
After she came home from her checkup and shots she was acting very strange. My wife took Atlas out in the backyard to play. Macy went over to the back glass doors and made a very strange growling meow. She rarely ever makes a peep and it sounded very strange. I don't know if she was meowing because they were outside or what, but it was pretty funny. Then she came in the living room and made the same strange noise. I tried calling her up my lap but she just ignored me. When my wife came back in with Atlas she gave him food. He is on a special prescription food that my wife is trying to locate. The veterinarian is out of it so she bought some other type till she can get the correct food. So she gave Atlas is food and announced "hot chow" because he won't eat until he hears that. Tom taught them that because that's what the Army calls good food or at least hot food.
The funniest part was that this new food is made Macy very interested. Either that, or going to the veterinarian made her act strange. She went over while he was eating and smell this food. She sat there with their noses apart about 2 inches. Atlas was in the avoid confrontation mode, so we just left and the cat stayed there sniffing his food. We wondered if she was going to eat some because he ate her food so much until we figured it out and he was eating her food. After a while she got bored left and he went back and finished his dinner. Some days he is frisky and is not afraid of her and some days is so intimidated by her attitude that he just leaves when she's around. It's pretty funny the 9 pound cat intimidates the 90 pound dog.

Unfortunately I read that one of the common problems with MS is that the afflicted person is left by their significant other. In our support group there been a number of young people whose boyfriend/girlfriend broke up with them after their diagnosis. I've heard of many marriages that have dissolved because of the difficulties that come with taking care of a person with MS. Most married people agree in their vows to stay with someone for richer or poorer and even if health is an issue.
One thing about these vows, myself included, is that most people can't even imagine a disease like MS. I have never heard of the type I have until I was diagnosed. And I took my vows in 1978 I can easily say that I didn't imagine this type of disease. Debilitating, but not terminal. A disease with symptoms and debilitation for decades. I knew of diseases like cancer, tumors, accidents that leave someone paralyzed etc. in my mind all those years ago I knew that these were a possibility. When we took our vows, it never crossed my mind that I would have to deal with something like I have if the situation were reversed. I am amazed at my wife and her dedication to me. She took our vows literally and I'm the beneficiary of that. I like to think of the situation were reversed I would do all the she is done but I doubt if I would have done it as well as she has. I essentially require the care that newborn baby would get only I weigh 200 pounds. She still makes me laugh, and we have been through richer and poor and that was hard and now we're going through bad health.
The decades that come with a diagnosis of MS is one reason why I think many people split up. When they get married neither imagine a disease of this type. It's a very poorly publicized disease. When they face the reality of how much care some people need it is easy to see why they would say "I didn't sign up for this". I feel bad for the people they are left alone with this disease because everyone with it needs a caregiver. I am one of the fortunate ones and to be honest I live with the constant fear that something will happen to her. I spent years as an engineer and always had to figure out a backup plan in case something didn't work right the 1st time. I worry that I have no backup plan for where I'm at now. My wife has been great and I can't tell you how important that is been to me. Words don't do it justice. I also have a relationship with Jesus Christ. When I worry I really need to pray instead. He has promised never to leave me or forsake me, so with that promise and the care I get for my wife, sons, and others, I am well taken care of and need to quit worrying. Of course that's easier said than done!