I mentioned I had a neurologist visit on Tuesday.. Matt took me so Janette didn't have to miss work. I went for 2 reasons. One was that I needed to see him for my next infusion and 2nd by trigeminal neuralgia pain is come back in a different place. I will talk about the infusion 1st. I told him I tolerated it well with no side effects. My right hand use has deteriorated so that I could no longer use my right. I do think it has slowed how quickly my MS is progressing. There is no real way to benchmark this so it is just my gut feeling. The reason I think it is slowed is because my breathing seems about the same as it used to be. I'm really hoping my next infusion will clearly slow or stop the progression. Only time will tell and that will not be easy to gauge either.
The other reason to see him was in my trigeminal neuralgia as come back only further back on the same side of my mouth. I had to see him to get an increase in my prescription. A few years ago this medication inhibited what little use I had of my right hand. To avoid taking it had I had a rhizotomy. Now that neither of my hands work in didn't seem to matter to me. He wrote me an increases prescription. I am hoping that works because it I don't really want another rhizotomy. The procedure wasn't really terrible but it took 2 days between the prep work and the procedure. Of course only the future will tell if it works well enough to avoid a 2nd rhizotomy.
This was the 1st time Matt has been able to meet Dr. Krain. After the doctor left I asked Matt if he thinks the doctor is a crazy little guy. He said "oh yeah". Most people either like him or hate him his mannerisms are very abrupt. He really grates on some people. Since I worked with many engineers I don't have a problem with his mannerisms.
He did order a blood test which came back normal other than I have low-sodium. I have to go back two more times to get it checked. I'm not sure what low-sodium means but going back to live to more times means hassle city. Also said my phlegmyy raspy breathing was made worse because the decongestants make thicker so it's harder to cough up. There's less but harder to bring up. I'll try skipping it for a while and see how that goes.
Phil and Macy
Thursday, February 22, 2018
Wednesday, February 21, 2018
Atlas the comfort.dog!
My wife had a lot of help this morning getting me up. These photos show how much help he is. One of the photos is licking my face. That seems especially helpful. We saw an article on the news last night about a ministry that uses comfort dogs. They're going to Florida which is awesome. There are about 20 people and 20 dogs. All of them were golden retrievers. I think we need to show that labradors can be great comfort dogs too. I don't think Atlas want to be left out because he is a great comfort to me. The 2 new cats are pretty entertaining with their antics. However they are not very affectionate. I'm not able to win them over with scratching their ears and calling them because my arms don't work. The normal things I would've done to win them over I'm not able to win them over. They want a bit younger than Macy was so maybe after they age they will get more cuddly. Right now they don't spend much time with me. Slim is coming out of his shell though and now does things to Lacy likes she did to him earlier. He pushed her off the windowsill one day and it was good to see him stand up for himself. I will post later about my neurologist visit. I have an upcoming infusion and that is one of the reasons I went to see him. I'll post more later, thanks for reading!
Monday, February 19, 2018
Atlas gets in trouble
When Tom is deployed overseas is dog Atlas came to live with us. Is very well-behaved other than barking at things that aren't there. He also like to chew on paper especially paper plates even if they don't have food residue. A couple of times he has gone into the garbage that we use for my things. Once the kitchen garbage was left open and he got into it. Saturday night was over the top though. We went to a concert and left him all alone for a few hours. Apparently the kitchen garbage cabinet door was left open. He not only got into my garbage can but the kitchen as well. He spread paper garbage from one end of the house to the other. It was even in the hall and our bedroom. The concert ran later than my wife thought it would be. She was already on edge because she needed to help get ready for the next days retirement open house for one of her sisters. We come home to a huge mess. Before we sought though she had let Atlas out to do his business. Then she came in the living room and saw the mess. She stared at it and then asked me who I thought did it. I thought she was getting and said "really? You don't know who did it?" And then seriously she said "it might've been the cats" I started laughing so hard I ended up choking. She said "they could have done it, one of them chewed through a food bag one day" I started laughing again they kept checking about this all night and the next day. Then she said I'll figure it out real quick and she let Atlas back in. She went to the middle of the living room and asked him who did this? He laid down on the stomach and would not going to living room. He put his head between his paws. She insisted he come over and kept calling them and saying who did this? When he gets in trouble and get scolded he just closes his eyes, like a little kid thinking if I can't see them they can't see me. It's kept scolding him the rest of the night. Is a very sensitive dog and this is serious to be scolded by her and rarely happens. Me he ignores when I scolded him but when she does it is very upset. By the time she came to bed she had forgiven him and patted his head and he knew everything was okay.
I still chuckle imagining the cats doing this and framing the dog. Just to this even more entertaining was both cats were in the living room end of the house. It seemed like they knew Atlas was going to get in trouble and they didn't want to miss it. Slim was behind the couch and he had to get up on his back and and stretch to see over the couch to watch the dog in trouble. He seemed quite entertained by this. Cats are kind of jerks. Then could look over the couch because he is a very long cat and has a very long neck. If he was not so long he would have missed the fun. I am still entertained by the idea that she thought might have done it. Cats would not of done it because would've taken to which effort to drag it all over the house. Can't do not that enterprising. I'm not saying they are lazy but I may be had to get.
I still chuckle imagining the cats doing this and framing the dog. Just to this even more entertaining was both cats were in the living room end of the house. It seemed like they knew Atlas was going to get in trouble and they didn't want to miss it. Slim was behind the couch and he had to get up on his back and and stretch to see over the couch to watch the dog in trouble. He seemed quite entertained by this. Cats are kind of jerks. Then could look over the couch because he is a very long cat and has a very long neck. If he was not so long he would have missed the fun. I am still entertained by the idea that she thought might have done it. Cats would not of done it because would've taken to which effort to drag it all over the house. Can't do not that enterprising. I'm not saying they are lazy but I may be had to get.
Saturday, February 17, 2018
Mass shootings
When I see some of the details of these mass school shootings I find it causes a large amount of turmoil. In all these cases they talk about all the kids who perpetrated the crime were bullied. A couple of the kids who were out of school and caused mass murder. I can't say and understand this by any stretch of my imagination.
If anyone would be able to understand it I would think it would be me. We moved around a lot in my school years after my mom died and I was 10. I lived with constant verbal abuse from my stepmother and some by my stepsister for years. I learned to just ignore them and consider the source. I was always small for my age, rather scrawny. To add to this I was mouthy which is a bad combination. I was the new kid a lot of years and became the subject of bullying in every school we attended. I moved to the city where we live now in the middle of 7th grade. There is one person in particular who verbally and physically bullied me until 11th grade. Some days he would tell me I should kill myself. Some days he told people I was homosexual which I'm not. Some days he would punch me in the back. No one ever stood up for me until 10th grade but he ignored them. Toward the end of 10th grade I became friends with Mark who became my best friend. In 11th grade I started hanging out in the group of people that Mark was friends with and the bullying stopped.
In all those years of being bullied and picked on not once did I think of settling it with a gun. I had access to a shotgun that my dad had. I was still 18 before I graduated I could've bought in a handgun or automaticb type rifle. I guess if anyone should understand these people who are bullied and semi-outcasts it would be me but I can't for the life of me understand. I can't say I really get it. If these people are this mentally ill why isn't their family stepping in. Your family can have you involuntarily committed if they need to. In all these cases there seems to be family involved that are either woefully ignorant or purposely ignorant. The Sandy Hook case just baffles me. His mother knew he had emotional problems and yet she owned guns and let him lose on society. I'm not saying all situations have negligent relatives but in a number of these cases it is true.
If the lure of military style weapons is that great then I would agree with banning them. I don't see that gun control would solve the problem though even though I wish it would.
Of course I never liked getting bullied. I never imagined shooting anyone. I had a "cancer list" of 3 people whose knees I would break with baseball bat if I ever got terminal cancer. One was the bully and the other 2 sucker punched me. One because I was mouthy and the other was a strange setup by an upper classman's lie about me. As I have grown up I have tended to forget about this and now that I have MS it really doesn't matter. Strangely I ended up working at the same place as 2 of the 3. I didn't have to work with them directly very often which was good because after all these years I find they are still jerks.
If anyone would be able to understand it I would think it would be me. We moved around a lot in my school years after my mom died and I was 10. I lived with constant verbal abuse from my stepmother and some by my stepsister for years. I learned to just ignore them and consider the source. I was always small for my age, rather scrawny. To add to this I was mouthy which is a bad combination. I was the new kid a lot of years and became the subject of bullying in every school we attended. I moved to the city where we live now in the middle of 7th grade. There is one person in particular who verbally and physically bullied me until 11th grade. Some days he would tell me I should kill myself. Some days he told people I was homosexual which I'm not. Some days he would punch me in the back. No one ever stood up for me until 10th grade but he ignored them. Toward the end of 10th grade I became friends with Mark who became my best friend. In 11th grade I started hanging out in the group of people that Mark was friends with and the bullying stopped.
In all those years of being bullied and picked on not once did I think of settling it with a gun. I had access to a shotgun that my dad had. I was still 18 before I graduated I could've bought in a handgun or automaticb type rifle. I guess if anyone should understand these people who are bullied and semi-outcasts it would be me but I can't for the life of me understand. I can't say I really get it. If these people are this mentally ill why isn't their family stepping in. Your family can have you involuntarily committed if they need to. In all these cases there seems to be family involved that are either woefully ignorant or purposely ignorant. The Sandy Hook case just baffles me. His mother knew he had emotional problems and yet she owned guns and let him lose on society. I'm not saying all situations have negligent relatives but in a number of these cases it is true.
If the lure of military style weapons is that great then I would agree with banning them. I don't see that gun control would solve the problem though even though I wish it would.
Of course I never liked getting bullied. I never imagined shooting anyone. I had a "cancer list" of 3 people whose knees I would break with baseball bat if I ever got terminal cancer. One was the bully and the other 2 sucker punched me. One because I was mouthy and the other was a strange setup by an upper classman's lie about me. As I have grown up I have tended to forget about this and now that I have MS it really doesn't matter. Strangely I ended up working at the same place as 2 of the 3. I didn't have to work with them directly very often which was good because after all these years I find they are still jerks.
Wednesday, February 14, 2018
A tribute to my loving wife!
A little over 10 years ago our marriage started to change from a romantic type relationship to a friendship based relationship. Currently, due to MS, my wife is my primary caregiver and has to do almost everything for me. There been some challenges during this morph but it hasn't been that hard because she has always made me laugh. Since I committed to her decades ago I would have to say there was no one I would rather spend time with. She is always made me laugh which is made my MS difficulties a little easier to bear. She is not only been a great girlfriend, wife and mother but she had been a great source of strength and happiness that really helped me when I'm down in the dumps.
Last night was a fairly difficult night and I was very restless. Not sure why. I woke up at 430 and could not go back to sleep. My mind got trapped in the circular reasoning and fretting about the effects of my disease. It's has advanced faster and farther than I ever imagined possible. The doctor told me I was atypical which gives little comfort. My sons do many things to take care of me and give me a reason to live but without my wife I don't think I would be here today. I love her dearly and I cannot think of anything more to say. I hope that is enough to express my love for her.
Last night was a fairly difficult night and I was very restless. Not sure why. I woke up at 430 and could not go back to sleep. My mind got trapped in the circular reasoning and fretting about the effects of my disease. It's has advanced faster and farther than I ever imagined possible. The doctor told me I was atypical which gives little comfort. My sons do many things to take care of me and give me a reason to live but without my wife I don't think I would be here today. I love her dearly and I cannot think of anything more to say. I hope that is enough to express my love for her.
Monday, February 12, 2018
MS grind
MS is a very strange disease no matter which type you have Mine goes to the same thing every day. After I shake the grogginess out of my head I am usually in a fairly good mood. My heart is full of praise for the Lord. Then the day progresses MS grinds me down. It affects all of my body system especially the nervous system. This is what is called MS fatigue and is impossible explain to someone who is never had it.
I the end of the night I cannot wait to go to bed. I get very antsy thing in my chair all day.The songs of praise her in my heart are gone and if I had a theme it would be from last lines of bohemian Rhapsody. "Nothing really matters anyone can see, nothing really matters to me". I feel like a deflated balloon and I appreciate the effort my wife puts into getting me to bed. At night I don't look forward to the next day because I know will be a similar progression. Oh well they say it is what it is but I just have another day to muddle through.
I the end of the night I cannot wait to go to bed. I get very antsy thing in my chair all day.The songs of praise her in my heart are gone and if I had a theme it would be from last lines of bohemian Rhapsody. "Nothing really matters anyone can see, nothing really matters to me". I feel like a deflated balloon and I appreciate the effort my wife puts into getting me to bed. At night I don't look forward to the next day because I know will be a similar progression. Oh well they say it is what it is but I just have another day to muddle through.
Friday, February 9, 2018
Thursday, February 8, 2018
Cat progress – entertaining
My wife mentioned last night that the cats have been here 3 months. They have been very slow to adjust to our home and now they come out of the bedroom fairly often. I see more of them in the living room on sunny days because Lacy likes to sleep in the Bed in the window. We've seen a little bit of why they are a bonded pair from the shelter. We have seen little tussles where they sort of wrestle with each other. One night it was over the bedroom window. His seemed like Macy took possession of the cat bed on the front room cat table. During the day is all hers one afternoon she wasn't in it and Slim got in and curled up. Later on Lacy went over and stood in the small opening available because Slim fills it up being larger. He stood there for a while until he got the idea that he was supposed to get out. He ended up getting out and sitting on the end of the table. Lacy then proceeded to try to shove slim off with her Paw. Slim turned and faced her and somehow they both knew it was go time. They went up against each other with their paws around each other like sumo wrestlers. They wrestled around for a while and then slim sort of tossed her off and the bed was his. It was the 1st time we see him stand up for himself. She came over and sulked. He only stayed in there about 45 minutes and then he was off doing something else.
Slim and Atlas seemed to come to some sort of agreement. They walked by each other but do nothing more than looked at each other. He is long and athletic and walks like a large cat like a panther. I imagine when the bats Atlas probably hurts. Lacy still finds Atlas annoying and lashes out at him when he is near. She did tolerate them on the bed a few nights. That is the good news I have is that she has started sleeping between my legs once in a while. If juice around a bedtime my wife will put her between my legs and sometimes she stays there for a few hours and of the time she just leaves. One night though she stayed up there the whole night except once came up between my wife and I. Went to get done with that she will back your little nest between my knees. She will ever replace Macy but it is nice that she is started to warm up to me. She even lets Atlas up on the bed as long as he doesn't get too close if he gets too close it is hiss and bat. Unless she has his nose he doesn't really notice which is kind of funny. Were wondering if Slim will join her after Atlas goes to Alaska
well over and out for now and take care dear reader.
Slim and Atlas seemed to come to some sort of agreement. They walked by each other but do nothing more than looked at each other. He is long and athletic and walks like a large cat like a panther. I imagine when the bats Atlas probably hurts. Lacy still finds Atlas annoying and lashes out at him when he is near. She did tolerate them on the bed a few nights. That is the good news I have is that she has started sleeping between my legs once in a while. If juice around a bedtime my wife will put her between my legs and sometimes she stays there for a few hours and of the time she just leaves. One night though she stayed up there the whole night except once came up between my wife and I. Went to get done with that she will back your little nest between my knees. She will ever replace Macy but it is nice that she is started to warm up to me. She even lets Atlas up on the bed as long as he doesn't get too close if he gets too close it is hiss and bat. Unless she has his nose he doesn't really notice which is kind of funny. Were wondering if Slim will join her after Atlas goes to Alaska
well over and out for now and take care dear reader.
Wednesday, February 7, 2018
Health update
MS seem to be affecting how well I can hold my head up (neck) my right hand can no longer move it at all or my fingers. It seems my infusion has slowed the disease progression somewhat. My next infusion will be in March so I will know more this summer. Right now I'm having my chair tip back a little more I used to so I don't have to hold my head up. It makes reading harder.
My trigeminal pain is back only further back in my jaw. I started taking the medication that used a mess up my MS arm movement and it is not working the best. Keep increasing the dose and the pain is not as bad as before and medication dulls a little bit.
They say suffering and trials bring you closer to the Lord but unfortunately I can't say that is true in my case. I really miss my paper Bible with cross-references in the center. I really enjoyed studying the Bible and my online version is great for reading but not for cross-referencing. I do have my brother-in-law that it stopped by once a week and we end the time with prayer and I really appreciate the time he spends.
We got word earlier this week that our son Tom next 3 years will be posted in Fairbanks Alaska. I was devastated by the news because I expected he would be within driving range so we would see him and Atlas. Now we will only see him at best once a year and not see Atlas for 3 years. It will take a little time but I'm starting to accept it.
well I'm running out of energy fighting my voice software so I will sign off for now. Take care dear reader.
My trigeminal pain is back only further back in my jaw. I started taking the medication that used a mess up my MS arm movement and it is not working the best. Keep increasing the dose and the pain is not as bad as before and medication dulls a little bit.
They say suffering and trials bring you closer to the Lord but unfortunately I can't say that is true in my case. I really miss my paper Bible with cross-references in the center. I really enjoyed studying the Bible and my online version is great for reading but not for cross-referencing. I do have my brother-in-law that it stopped by once a week and we end the time with prayer and I really appreciate the time he spends.
We got word earlier this week that our son Tom next 3 years will be posted in Fairbanks Alaska. I was devastated by the news because I expected he would be within driving range so we would see him and Atlas. Now we will only see him at best once a year and not see Atlas for 3 years. It will take a little time but I'm starting to accept it.
well I'm running out of energy fighting my voice software so I will sign off for now. Take care dear reader.
Monday, February 5, 2018
Update on computer problems
After trying quite a number of different setups with ports and microphones I've come to the conclusion that it is not only my voice software is a problem. It seems my PC has lost the ability to use the microphone correctly. This puts a new spin on my problems am not sure how to address it. It one point I considered adding my voice software release 13 premium to my bedroom PC and switching them out. My wife spent much of the weekend looking for the CD and never found it. One fear I have with this plan is that my bedroom PC my living room PC are the same type and brand. I sure how long the sound ship would function in the other PC. Right now I can post short posts and live with the restoration of turning my voice software often them back on. After a certain point it just quit listening altogether. So for now I will post once in a while and try to make my post short. This tends to exhaust me because my raspy breathing as words in at the end of sentences that I have to remove them. So like this post have turn the microphone on at least half a dozen times just to get this. I thought I should let you know how things are going and I appreciate my son Matt's help working with the computer as well as Dan remote aid. My brother-in-law Mike spent some time last week saying what he could do. He came to the same conclusion. Now I might have to make post short which is difficult for me. Keep you posted.
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