My Thinking Spot – Manchester Trout Hatchery

Today is Monday so I’m posting is going to be on the light side. Pooh Bear was one of my favorite characters to read about to my sons when they were very little. Pooh Bear had a “thinking spot”. My thinking spot was the trout stream at the Manchester hatchery. You can cross over the stream under suspension bridge, climbed the turnstile provided for going over a fence and then go down stream. When I was a young man that Iowa DNR had added bank hides all up and down that section of the springfed Creek. This stream was called Spring Branch. It became my thinking spot.

Fishing was always secondary at this spot. During the day it was almost impossible to catch the fish with the flies. There were a few spots we could finish the riffles and be successful even during daylight. Some of these bank hides how the huge fish. I would often stop there on my way home from a long day of trout fishing. It was close enough that I could drive up after work and fish a couple hours and still make it home at a decent time.

I have to admit it became my favorite trout watching spot as well as my thinking spot. With forward sunglasses you could see quite well through the surface of the water. Since the trout were very difficult to catch in the pools I would just sit and watch them. Some would motor out into the moving water and grab something so small it was invisible. This is how they fed. It was very frustrating to try to match the “hatch”. Sometimes I got lucky but most the time I just watched the fish.

One thing I noticed was they always faced upstream into the moving water. This required energy on their part. Under the bank hides the water moves slowly but still it moved. The trout always faced upstream. Occasionally after they grabbed an insect they would twirl downstream and then back into the hide. That was pretty much it for anything other than fazing upstream. Occasionally you could see if fish basic downstream caught in some vegetation. These fish were always dead. I read somewhere that trout need the water going over there gills from front to back. If they faced downstream too long they would suffocate. I’m not sure if that is true but I tend to think it is.

The lesson I learned from these trout is to always keep facing forward. Some people say it is “never give up”. This is the lesson from the trout. When a trout would get sick it would lose its strength and no longer be able to face upstream. I’m afraid sometimes when people lose their strength to keep going forward they spin into depression. This is always a dangerous condition just as the sick trout can no longer face upstream. Sometimes we need others to hold us up. To the Lord in prayer or possibly physical help. That is the lesson I have taken away from trout watching and going to my thinking spot. there are many places in the Bible where are we are urged to press on in the Christian life. Sometimes that is all we can do is face  into our problem is and hang on to the Lord.

My Journey with MS and Other Ailments Part 5 – House Stories

since I started this series I feel I have to continue until I get to current events

My Journey with MS and Other Ailments Part 3

When all 3 of our sons graduated from school at Alburnett we had decided to try to sell our house and move into Cedar Rapids to get away from the daily driving to our jobs. We started looking at houses on the northeast side of Cedar Rapids. Both Janette and I had grown up there and we are Northeast Siders. We tried to do it the way you’re supposed to where you sell your house 1^st and then find one to move to. We found a number of houses it with our suitable but ours did not sell. We knew I had MS but it wasn’t really that bad at that time. Toward the end of the listing we received one very low offer and would’ve considered it but they wanted three-week possession. That meant moving twice. We opted against it. At that time we decided “oh well we’ll just stay at Alburnett” will just put our money into better vehicles and try to pay off the house as quickly as possible.

After trying to sell and failing we decided to make some modifications. Some were from the need for resale and some were to help with my condition. We had the driveway paved, and had been gravel. I lost the ability to shovel on the gravel. Shoveling snow one gravel is not easy. Our elderly neighbor Mrs. Newman had a paved driveway and the snowblower. I had been taking care of her driveway, her sidewalk and our sidewalk since her husband had passed away. After we got our driveway paved I purchased the snowblower (two-stage) and did her driveway and ours. I was able to keep moving snow with the snowblower until it became impossible for me due to my left leg dragging. At that time Janette took over. I always enjoyed using the snowblower. After all the years of shoveling the snowblower just walked through the snow and made it so much easier. So we paved the driveway and a few years later it wasn’t enough because I couldn’t do it anymore.

I could still do some things so we decided to update our kitchen because we felt it was one of the things that made our house difficult to sell. We added a dishwasher and garbage disposal. We had done without them for 20 something years. We felt resale required it though. At the same time there was an area of the house in the back that I enclosed. It could have been a small kitchen nook. I turned it into a pantry and primarily a laundry room. Since I couldn’t go up and down stairs I was able to do laundry because it was now on our 1^st floor. We added a gorgeous door with frosted glass panes going into this room. I did a lot of projects over the years but this one was the most fun. Due to my MS I had to develop a system where I would work for a while until my left leg quit on me. I would lay down and rest and then get up after a while and do some more work. It was slow but with Janette’s help we got it done. Others helped also but there were too many for me to name here. Thanks to all of you.

Of course after about a year I could no longer pull myself up and put close in the washer. I was no longer strong enough to bring the clothes out of the dryer and keep them from being wrinkled.

At that time I would drive my power chair around the house. There was a ramp that led to the garage. I would drive my power chair to the bathroom doorway and then use the sink to pull myself in and rolled onto the walls until I could do my business. Same with showers, I would put my right leg in the shower and then hold on to something with one hand and dragged my left leg in. This didn’t seem so bad to one day I slept point my left leg and fell. My ribs hit the side of the tub and I’m pretty sure they were broken. I knew that it was pointless to go to the doctor because they don’t do anything for broken ribs and less they punctured your lung.

It was time to get serious about finding a different house. We decided to look for a house or condo. After finding what we needed we would purchase it and then put our house up for sale. We found a great realtor, Kris Watkins. I will follow up on this in my next installment.

Trigeminal Update – Minor

there were a couple of things I should've mentioned yesterday.
2 Things I have noticed because of the numbness that has replaced the pain which was the purpose and result of my procedure. The numbness on the right side of my face as produced a couple of minor issues. My speech is not been good anyway because of how MS has affected my diaphragm. Now my speech is affected a little more because the numbness affects how I pronounce some things. Janette has not noticed she said. My voice recognition software has. I have to do more correcting now but it is still works pretty good on my PC. I usually proofread everything twice. I find there’s still mistake and eventually I just post what I have because that’s all the energy I have. Siri is not very good anyway on my iPad or iPhone and now it’s a little worse.

I have found I cannot chew was fast since my right side is a little numb. When I put food in my mouth I cannot feel so well on the right side. I have to relearn how to eat. I’m going to practice practice practice!

Trigeminal Procedure Report– GOOD NEWS

I’m going to take a break in my many parts series that I’ve started. It is becoming much longer than I envision and I thought I would be at the point to share the results of my recent procedure. It is called a Rhizzotomy. In this procedure they use MRI results, x-ray results and they live x-ray to run a needle up into the opening in my skull for the trigeminal nerve. Then they send electric signals and the doctor moves the needle around until I tell them that the tingling matches the spot where the pain resides. This hurt less than novocaine shot from the dentist. Then the hard part.

They heat the end of the needle up. Some of the setting were 70° C and 60 sec. others were 80° C and up to 90 seconds. The last setting to mention was 90° and 90 seconds. I could feel the ones that 70 and 80. The ones at 90° C were unbelievably painful. I remember about 6 different times they heated the needle. I think I mentioned earlier of the good anesthesiologist nurse talked me through the 2 painful ones that 90° C.

So now the results: it’s been over a week since and I am confident to report the results are mostly positive. There is some numbness in my right cheek but no pain. There is some extra numbness around my right eye, the right side of my nose and my right upper lip (my mustache). So in some areas there is a little more numbness than I expected and a few areas there is some I didn’t expect. I would have to proclaim this a huge success! I probably won’t know hundred percent that the pain is gone for a few more weeks but I am ultimately confident.

The biggest benefit is going off of the trigeminal pain medication. I’ve been totally off of it for a few days now. Janette suspected it had adversely affected the use of my hands. I can report she was totally correct. While my hands are still very limited I am now back to pre-Christmas abilities. That was when I went on the new medication.

Most importantly I can brush the kitty again. She has to stand on my chest while I’m in the bed in the mornings. She seems very appreciative. I can also run my PC and my iPad easier. I still get very fatigued and in the evenings am not able to do much with my right hand. I am back to being more able to be by myself during the day while Janette is at work. This is huge! We were both fearing that I would need more care than we are able to provide right now. I have gained some of my independence back so yay yay! Thank you so much for all your prayers and your continuing prayers. I am almost ecstatic. I’m hesitant because I know how easily good things disappear. I probably shouldn’t feel this way but I am what I am. By God’s grace I try To have a better attitude every day. I thank the Lord for his provision and his presence.

My Journey with MS and Other Ailments Part 3

I think I had left off in my earlier post that I was using a power chair and a back of the van chair lift I mentioned this worked for quite a while. Then as time went on it became more and more difficult for me to get from the front of the van to the back. I found different places to go hold on to the van and tottered to the back. It became increasingly difficult to hold on to the van and open the tailgate. One day as I was holding on to the back of the van I went to open the tailgate and missed my handhold. I slowly started going down and ended up sitting on my butt and then my torso fell back and my head hit the concrete sidewalk. I have learned the fall so when my head hit the concrete it was not a serious impact but it made me realize the days were numbered that this setup would work. A number of my coworkers ran over immediately to help me. I felt really bad for them to have to see this and feel helpless. It was time to find a van I could drive into. A ramp van.

But guess what – there is not anyone in Cedar Rapids that is equipped to sell these. My choices ended up being a Rolix which are manufactured in the Twin Cities. I found many listings on Craigslist, the MS website and the Siebert’s website. There were a lot of used vans in Minnesota that were well priced. The same for Chicago area. The only problem was very difficult logistics. Driving that far to see a vehicle that may or may not work introduced to many obstacles. There was also a place in Waterloo but they didn’t have any vans available. Their process was that you find a van with power equipment doors, purchase it and they send it off by train to be modified. I ended up going down this Siebert’s which is located in Iowa city. They did an assessment and were very good to work with. I had been steered toward Iowa vocational rehabilitation by a friend, John, who is wheelchair-bound also.

Siebert’s were great to work with. I found the modified vans are quite expensive. A good new one range between $50,000 and $60,000. Iowa vocational rehabilitation would help about 40%. I looked at used vans and they had a Toyota van and 2 Chrysler vans that fit my price range and’s features. I lean toward the Toyota because of Toyota’s reputation. Janette and I went down and I test drove it. I really liked it. Siebert’s worked with Iowa vocational rehab and I used our home equity line of credit to purchase it. They added a drivers seat that would power backwards so I could drive in the van and slide into the driver’s seat. Then the seat would go forward and I could drive.

During the same time frame we started looking for a house that would suit me better being in a wheelchair all the time. That’s a whole another story and I think I’ll save it for the next part of my journey documentation. It sure turning into a long story. I guess that’s the engineer in me. I was an engineer but still said and engineering mind is a character flaw. Ha ha.

My Journey with MS and Other Ailments Part Two

As I Reread part one I realized there was nothing about the spiritual side. During this time I had one bad episode of anxiety. That was in 2010. I learned what psychosomatic illnesses are. I was anxious all the time and losing sleep over it. I was afraid for the future and was spending all my mental energy thinking about what I would do when the next step and the next step after that would happen. I wanted to figure something out. You know I was an engineer so overthinking things is a personality trait.

I truly depend on the Lord but my anxiety was robbing me and giving me symptoms of digestive disorders. After a battery of tests over a month they found nothing in my digestive, renal and such that could be causing my problems. I realize my problems were psychosomatic and went back to my primary care doctor and he put me on an anti-anxiety medication. The first week of this medication was very difficult. It seemed to raise my anxiety and introduce depression on a level I had never experienced. I called Dr. after three days and told him I didn’t think I can make it. It was considered a medication that needed a week for adjustment to the medication. He asked me to hang on for another few days and see if it changed. After six days of the med I stabilized and found it works fantastic. I have been on it ever since. No side effects. It’s amazing how some of these new medications are so subtle and have no side effects. At this point I have to praise my primary care physician, Dr. John Roof. In all my MS physical trials he has been the best help of any one I could find. I trust him implicitly.

After I went on the antianxiety medication (it is also considered antidepressant) I slept much better. I had been waking up at night and trying to solve future problems. They just went round and round and round. I know worry robs us of our joy and they found the medication broke that cycle of fretting over and over and over and over about the same thing. I still would wake up at night planning for the future but it would not keep cycling and I could go back to sleep easily. I know some Christians say you should not use these type of drugs and just trust the Lord. I trust the Lord implicitly and believe some of these medications are here to help us not rob us. My rule over the years has been that if a medication makes me feel drugged or sedated I don’t want to be on it. If that happened then I need find a different medication or just tough it out. That is one of the reasons I like Dr. Roof because he understands how I feel about this and tells it to me straight.

This is part two in my series I hope to continue. Right now the results from dropping my trigeminal medication are looking very positive. I am hesitant to announce the good news until I go a few days or a week with good results. Stay tuned “same Bat time, same Bat channel”. I think you have to be in your late 50s to understand that reference.

MS progression part one

My Spiritual Journey with MS and Other Ailments Part One

As most of you know I have been afflicted with that type of MS called primary progressive. No relapses and remissions just a steady decline in function. Usually starts in the legs and then sometimes follows in the arms and other parts of the body. In my case it has advanced farther and faster than typical. It has surprised my neurologist and of course myself.

My original prognosis was that I would have problems walking (leg dragging and footdrop) but make it to my normal retirement years still being able to work. That was in 2009. My normal retirement would be around 2025 or 26. This didn’t seem so bad. Walking with a cane – no problem I could do that. Using a wheelchair – tougher but I can handle it. I worked in the computer 95% of the time. I was an engineer so this seemed like a good future. Unfortunately not much happens the way I expect.

As I mentioned earlier my MS progressed faster and further than I ever expected. It is now February 2016. The practical progression and steps that have been significant were as follows:

I started using a power chair because the distance is I could walk with a cane were decreasing. I needed some way to get the chair in and out of the house and get from one place to another. So I added ramps to my house. I could still do quite a bit of stuff myself but became fatigued quite quickly. The MS Society supplied me with a wheelchair lift that fit into the back of my van. I had to modify my chair – the back would swing down but then fit into my van quite easily. I could drive and then get out of the van, totter back to the back, open the hatch and then lower the chair with the lift. That I got in the chair and drove off the lift and then raise the lift back in the fan. I didn’t have an automatic tailgate so I would have to get up and shut the tailgate. Most of the time at work I would transfer from my wheelchair to my desk chair. Work was not much different but my employer was very nice and set me up in an office on the first floor. Stairs had been a problem for quite a while.

This setup worked well for a quite a few years. Then I had problems getting up out of the chair and walking very far. This made it difficult in our current house. It was older and the bathroom doorway was very small. It became very difficult to get in the bathroom. A few years earlier I had started sleeping downstairs in the first floor bedroom because I couldn’t climb the stairs to the second story anymore. We called in a modification expert and he told us we really didn’t have much to work with their. So we needed to find a different house.

(This ends part one – I hope to continue this series until I get to what’s currently going on)

Baby Shower – Niece Stephanie

Yesterday I had a new experience. Our niece Stephanie is expecting a baby. She had lived in Colorado and was moving to Alabama with Jake, the baby’s father and Stephanie’s significant other. Since they were passing through and there was a baby shower planned it became a more inclusive group so that we could see her and Jake on their way to Alabama.

I have never been to a baby shower. The food was fantastic, my wife and her sisters always put out a good meal. I’m pretty sure I ate too much. Our son Matt, the chef made tiramisu. It was fantastic.

It was great to see Stephanie and Jake and especially Jake’s high level of interest in Stephanie and the baby. The baby will have a wonderful caring environment to grow up in I wish them the best. Can’t say I enjoyed the baby shower part. I did get to talk to some old friends. It was great catching up.

We were asked to go around and say how we knew Stephanie. I had already talked a bunch so I was out of breath and couldn’t speak. I wanted to share something but could not. I hope I can on this blog.

Many years ago my wife, Janette, babysat her sister, Joyce’s, two children while she attended nursing school. So when I came home from work there were my three sons and our nephew Zach and our niece Stephanie. Zach was like one of the Gorman boys. When I came home from work it was possible they were running by on one of their games of Nerf or hide and seek and they would say hi dad or Zach would say hi uncle Phil. That was it.

Every day though Stephanie would be waiting for me and squeal hi uncle Phil. Every day it was like having a daughter. She loved spending time with me and Stephanie is the closest thing I will ever have to a daughter. I love her dearly. She did promise to always stay three years old so we can continue our fun. Unfortunately she has still gotten older but I don’t hold it against her. Is great to see her moving on in her life and God bless her and Jake.

Cat and Dog Training Video

Cat and Dog Training Video

I have been trying to get this on there for a week. I finally figured out when I emailed it from my phone it was going to my junk file. First time this has happened. It’s so nice to have adventures in computers every week. Consistency doesn’t seem to be a serious concern. I know I don’t talk the best but the voice recognition on my iPhone and iPad is beyond stupid. Oh well maybe my new iPhone six will help. It comes later this week.

This video is hilarious. No animals were hurt in the production of it. The cat has been declawed in the front. She can’t hurt the dog except she hurts his feelings. He can’t understand why the kitty doesn’t love him and he is intimidated by her. Poor little puppy. He weighed 85 pounds and the mean kitty weighs 11. Someday she’ll figure out he is a nice warm comfortable coddler he can be. The cat is kind of  stubborn  so who knows.

St. Luke’s ER – this was written last week

I’ve always been very reluctant to go to the ER. After I have been diagnosed with MS it is been worse. I was always afraid they would just say you have MS go see your neurologist. Last few months I have gone there twice. I have found out my attitude was totally wrong. The first time was after Christmas of 2015. We had a PA I think her name was Baxter. She was fantastic. They looked at me as if I didn’t have MS and then factored in the MS. The care I received was fantastic.

A little over a week ago I was having arm and shoulder and neck spasms from my MS. It was like nothing I’d had before. I’ve had similar spasms at night. Three or four times in the last few months Janette has had to wake up, get me into my chair and then go back to bed. I came out to the living room and read during the spasms until they went away. This was usually about an hour. I would then wake Janette up again and she would put me to bed.

This last time we tried that. The spasms just kept getting worse. My neck pain was unbelievable. The spasms just kept getting worse and were almost continuous. We finally decided to go to the ER. Not sure the doctor last name is first name was Tom. He was fantastic. He understood my problems and seem to know how to factor the MS in and still treat me effectively.

I’d already decided the next time I had the spasms I would call my neurologist. I am sure he wouldn’t prescribe a drug called baclofen. This is for spasms. I’ve also read this drug has side effects. Not sure what they are but I don’t need side effects. This ER doctor prescribed a low dose of Valium. It turns out Valium is a muscle relaxer as well as other things. this worked fantastic. I could sleep again.

They recommended I talked to my neurologist for continued treatment. Since this works so well my neurologist saw no reason to switch to baclofen. Were now over a week into this and is working fantastic. I’ve not had a bad night sleep in over a week. I hope this continues. I’d always thought Valium was a very powerful drug and a mood enhancer. I found in the dose I have it is neither. My fear of drug addiction has been significant but now experience as told me it was unfounded..

I’ve gained a fantastic outlook on the St. Luke’s ER doctors!

Trigeminal Neuralgia Procedure

I had my Rhizzotomy procedure Thursday afternoon at the University of Iowa Hospital. I guess like everything there was good and bad. I met some wonderful people as they prepped me for the procedure. The anesthesiologist used to work in John Hopkins and had performed this same procedure with Dr. Ben Carson. I found that very interesting and for some reason it was calming. The anesthesiologist nurse was named Jim and he let me call him Jimbo. He was very entertaining and the most helpful person in the whole thing.

They had warned me many times that the procedure would replace numbing for the pain. Of course numbness has its downside but it is a fantastic change from the pain. The pain was more than I thought was humanly possible so it seems like a fair trade. I won’t know for sure how well this procedure will work for about a week or so. I do have numbing in places that didn’t apply but I told the doctor and the team that que sara sara. Some of the team were old enough to remember that was from the Doris Day show. I do have some numbness in my nose, browI   and mustache on the right side. Hardly even a nuisance and it may pass. I was supposed to stay on the trigeminal medication for a week but because of circumstances I’ve gone a few days without it and no pain. So I’m hoping for the best.

One thing about the procedure that they didn’t really tell me specifically was how painful it would be when they burned the nerve. I was told I would feel it but the pain was pretty high on the scale. I had explained to Jimbo that I found pain easier to endure if I knew how long I had to hold out. He was really great at telling me how many seconds were left. They were different temperatures they use and the only ones that really hurt were when they did the 90° C burns. They did the burn about six times. Someday I hope to cross paths with Jimbo and buy him a beer.

The procedure went pretty well except for some pain. I was never out totally because I had to respond to the doctors questions. They would send electric shock through the needle and I would have to tell them when it made my cheek on the right side numb. That was how they knew they were in the right spot to burn the nerve. Afterword I went to recovery and I felt really good. I drank a glass of water and I really had no bad feelings. They told me not to have alcohol for 24 hours or Janette and I would’ve gone to old Chicago.

As it turned out this would’ve been a huge mistake. By the time I got home I had developed problems with my stomach. After we got home I found I could not hold down food. I found I couldn’t even hold down water. So my medications didn’t stay down either. This started around six at night and finally around midnight I was able to stop enough to go to sleep. Today (Saturday) is the first day I could eat. Yesterday I could drink Gatorade as long as I drink it slow. Part way through the day I could take the medication. I developed an awful headache and couldn’t take anything for until yesterday afternoon. This morning I finally could eat breakfast. I haven’t eaten anything since Wednesday. It was really hard not drinking anything on Thursday. I miss the liquids much more than I miss food.

We had originally decided to have the radiology type procedure. Then after meeting with the radiologist we still thought it was a better option. He was very concerned about my MS and he said is procedure probably only had a 50-50 chance. The more we thought about it the more we decided the Rhizzotomy would be better. After going through it I still agree the Rhizzotomy was the better choice for me. With the radiology you would not know if it is effective for months. With the Rhizzotomy it can be performed again if the result are less than needed. I can’t say I want to go through it again but I would if I had to.

One thing I didn't mention is that with the numbness the right side of my face feels a little bit like after Novocain in a dental filling. One of my worries before the procedure that the numbness in my cheek would be so significant I would drool or have problems drinking. Was afraid my drink would run out the right side of my mouth. Even though there is numbness I'm still able to drink and no drooling or face sagging. It's difficult to chew on my right side I think I will get used to it. Most of you know how much I like eating.

Suffering

Many years ago our friend and pastor, John North, defined as suffering in a sermon. It is always stuck with me. Suffering is getting something you don’t want and it is not getting something you want. The simplicity of it struck me and over the years I’m amazed how true it is.

I now have a debilitating and chronic illness. I appreciate everyone who acknowledges my suffering. I do not begrudge anyone of their suffering. If it is a day, a week, a month or longer all suffering is felt and not to be minimized. When I first started going to the MS support group most of the people had Primary Progressive or Secondary Progressive. There seem to be an underlying tone that people with Relapsing Remitting didn’t have it so bad. I mentioned once the worst type of MS is the one you have. All of them are bad in all of them create suffering. There is no hierarchy all of them are tough to deal with.

This same with any sickness whether be an awful day they are all hard to take. MS is considered an autoimmune disease. It’s as if the autoimmune system goes a little crazy. Due to this I’m pretty sure that is why I have been had a serious cold or flu for 10 years. I don’t miss serious cold or flu so I’ve MS gave me anything it is an appreciation of people go through those diseases. When I get a little sore throat it is usually gone the next day. Other people I know it takes two weeks for them to get out of their system.

Again suffering is getting something you don’t want!

Quality Of Life

When I was still working my office was near a conference table in a large section of hallway. On occasion different groups would have a special lunch there. I would always tilt my chair back and rest at lunchtime. I could overhear much of what was said at these lunches. These people were very nice coworkers and I found much of what they said entertaining and often responded back humorously.

One day I heard some ladies discussing an elderly relative. She had recently passed on and they brought up that she had had very little quality-of-life toward the end. I have thought much about this expression. Many would look at my condition and say I had very little quality-of-life. In some ways this is true but after living it I find I have much to be thankful for. As this disease shrinks my world around me I still find many things to enjoy.

I can no longer get out and bike, hike or kayak. These were my favorite activities and I’m no longer able to do that. I spend the majority of my time either in the bedroom or in my chair in my living room. My world has shrunk significantly. I admit sometimes this is very difficult to bear but I keep in mind I have much to still enjoy.

Recently my friend Bill posted on Facebook a post pertaining to suicide. Bill had a close relative who ended his own life a few years ago. It was a tragedy to those left behind. The post pointed out that this is not a selfish act but it is an expression of mental illness. I totally agree with Bill especially in the case of his relative.

That being said one thing that has weighed on me is some statistics on people with MS. MS is not a death sentence. It is more of a life sentence. As someone who is given a life sentence in prison the only way out is death. I have experienced very dark times where this seemed a good choice but as yet I have not taken that step. One thing that is always weighed on me is the statistics is that suicide is the third leading cause of death in people with MS. For quite a number of years my brain has told me this is a good way out. Conversely my heart says keep on living. Hang on for one more day a popular Christian song says.

Many days I just hang on. I ask myself can I just get through today? The answer is always yes I can make it through today. Tomorrow will take care of itself. This has carried me through. Also it seems a horrible way to leave behind the caring people I’m surrounded by. So my credo now is just hang on! As the days proceed just hanging on I end up at a “large place” and all my troubles have evaporated in the dark mood is lifted and I enjoy life again. These times of enjoyment are so much better than the dark times I am so glad I hung on. I love life, I love my family and I love praising my Lord and Savior. None of these can be done if I take the easy way out. Thank you all my loving friends and family. You make life worth living.

He Restores My Soul – Psalm 23

It is now the middle of February. After my two night stay in the hospital at the end of December I have to admit I have had a terrible attitude. My heart was like stone. I Felt nothing but self pity I felt so cold in my heart toward the Lord. I will admit I had a lot of anger also. This was confusing also because I know that God loves me. I still found my heart was cold like a rock in the winter. I would read the Scriptures and it just felt like the words bounced off my head. Even those great verses in first Corinthians 13 didn’t find a resting place in my heart.

In the back of my mind I kept remembering that short section of Psalm 23 where it says he restores my soul. I kept thinking he would but also I kept thinking my attitude was so bad I couldn’t see how that could happen. I went through another visit to the ER for spasms. I have been on an effective medication ever since. It is been a week now and I’ve gotten a good nights sleep every night since. My heart was still cold. I kept reading the Bible by my heart was hard. Then this morning I woke up in the cloud was gone. Somehow he restored my soul I woke up glad to be alive. Glad to be able to praise him. Glad to love my family that cares so much about me.

The last thought I want to share today is God is bigger than our problems. He holds onto  us even when we don’t hold on ourselves. God is great and greatly to be praised. Hallelujah.

Macy – A One Person Kitty

I’m no longer able to brush Macy because of the inability of my hand to hold the brush. For the last month or so Janette has brushed her. She had no idea how relentless this cat is for brushing. Wherever Janette goes she follows her. She sits there next to her and stares at her until she gets brushed. Ignoring her is not an option. Janette harshly speaks to her that she already brushed her once today but the cat is oblivious to this and just stares. Of course we know wins this battle.

Because of this I found out Macy is more of a one-person cat. Now she is torn between the two of us. She likes to sleep on top of me, my legs usually. My hand is little better now so I can scratch her chin and she is torn between two people. She has been acting a little strange, hiding a lot and such. There are two of us now to tend to her Kitty needs of attention. This is confusing to her but she will just have to grow like the rest of us have.

One day Janette was showing me little dogs on an adoption website. I said that would be nice to have a little cuddly dog. Later that evening Macy was extra affectionate toward me. It’s as if she understood. She’s such a silly kitty and so entertaining!

University of Iowa Hospital

We spent most of the day last Thursday at the University of Iowa Hospital. With all the various departments we went to we saw most of the hospital. It was staggering to imagine how many people are sick and need care from there. It seemed like everywhere we went we overheard the word radiology and radiation. So I’m assuming many people were there because of cancer. It was very sobering to consider so many people are much worse off than myself. I feel for them and have no words to help those who are afflicted with those conditions. Say file
Most sobering was seeing the new 10 story Children’s Hospital. It is huge. Staggers me to consider that many children with serious conditions. Children should not have serious medical conditions. Growing up everybody I knew was in good health. One next door neighbors younger child had had heart surgery and was limited. That was that as far as bad health and he had a fairly normal upbringing. I’m glad for the hospital to help but thinking of that many that needed is a little agonizing. God bless all those families so afflicted. I cannot imagine the difficulties that they will face.

Long day at the University of Iowa – it went well though

Thursday my wife took me down University of Iowa for preliminary things scheduled for my procedure next Thursday the 18^th. Started with an MRI on my head at 9 o’clock at the University of Iowa sports medicine clinic. After that it was over to the University of Iowa Hospital. Add x-rays on my head around 10 AM. Then at 11 we met with the neurosurgeon was going to do the procedure. He reviewed my MRI showed me the trigeminal nerve opening that he would be trying to hit with the needle. There are no guarantees of course but he said he would do the best he could. The example he showed me showed this spot he needs ahead as a very faint outline on the MRI. He was an older man and is done many of these procedures so I’m hoping for the best.

Around 1 PM we finally made it to the cafeteria. We were both starving, neither of us sitting breakfast. I needed coffee really bad to. Food was awesome. If I worked at the University of Iowa Hospital I would weigh 300 pounds.

Last we met with the doctor who reviewed my capability for procedure due to my shortness of breath. I had only brought it up the earlier questionnaires because of a problem I had 10 years ago on ankle surgery. When I laid back completely I was very short of breath and told them I needed to sit up. They kind of freaked out and were talking like I was having a heart attack. After a couple minutes my breath caught up with me and I was fine. Their reaction made me worry again about that and so we had another doctor take a look at me and she gave me a clean bill of health. I didn’t want to and up in cardiac ICU by mistake.

Then home by 4 PM. Pretty long day but it went pretty well. I’m really hoping the procedure takes care of my pain. If I can get it 90% decrease in pain I will consider it a success.

Good News Update – Spasms

I have some good news to report. The new medication that started in the ER and then was confirmed by my neurologist has worked fantastic for the spasms in my arms, shoulders and neck. It’s still early but I have had uninterrupted sleep the last few nights. Even the leg spasms are on the wane. Amazing what a good night sleep does. My whole attitude is changed.

Truly this is an answer to prayer. Without the visit to the ER I never would’ve taken this step on my own. I am not the best patient in the world and have difficulty communicating especially with my neurologist. I tend to have to wait until there’s a crisis and then seek remedy. I had called him about month ago because I thought the spasms were related to pain and he prescribed a completely different medication. I suppose if I had a way to communicate better with him this may have been preventable. But as it is I am thankful that again God has overcome one of my many weaknesses. Thank you all for your prayers and continued prayers.

Also I have found the tightness in my shoulders, arms and right hand decreased. This gives me more use of my right hand and arm. I am able to post on my blog. So for the near future I am back online!

Some Improvement

I was explaining to my son, Dan, how a feature of my voice recognition software worked with the old desktop up window. It creates a grid across the screen and then as you call out a number the grid takes up that smaller space. After two or three number callouts the mouse is now over the icon and you can select it. As I explained it to him I realized I could create Windows 8 program icons on the old desktop.
Now I can open Kindle and then turn the book pages hands-free. This is working pretty well and I find I’m not using up all of my right hand capacity and have a little left over when I go to bed. So now at bedtime I can do a few crossword puzzles that I haven’t been able to do this year. Another recipient is my cat Macy. I can scratch her ears, or head and chin. Now I get to hear that wonderful purr that she has. I’m glad I have my priorities straight now and that the kitty benefits for many capacity that I have left! Kitty always comes first right?
I am very glad of any improvement however small.

MS Status February 8

Nothing good to report. One of my friends that I met through the MS support group has been going through a terribly difficult time. Those with MS (all types) uncertainty on a daily basis that is much more heightened than a well person. As symptoms crop up we are plagued with wondering whether this is a permanent change or if it will fade. In my case when things show up it does get better but then goes back. This brings up this year and especially problems last night.

This year I have been plagued by increasing muscle spasms. I’ve had some for years but they have been bearable. Starting this year my arms and neck have had increasingly severe spasms that show up after I go to bed. My arms stick straight out, my palms turn outward and my shoulders contract toward each other. The same time my head spasms backwards in my neck and my body shudders. There have been times when this has woken me up and I could not sleep. I Had to have my wife put me in my chair so I could sit up until they passed. Until last night this usually took an hour. This is extremely difficult for her because she has to still get up for work the next day.

I had called my neurologist and told him of some increasing pain that seem to proceed these things. He provided me a medication that I have tried in the past. Long story short last night was over the top. I was almost asleep when the spasms started and the just increased in severity. This started around 10. I had my wife give me in my chair and I came out of living room and tried to relax after taking a pain pill. The severity increased and was not fading. I tried to cool off by opening the door to the outside and that seemed to help a little but then they would return. I realized this was more than I had ever dealt with before. My wife had offered to take me to the ER and so I agreed. The spasms and pain just kept increasing even until we were at the hospital. Our son Matt came over to go with us. Say file

At the hospital we had the same nurse, Gina, that we had had one other time. It was kind of funny. The doctor on duty was very good and they put me on a Valium intravenously. This relax me immediately and the spasms stopped. It wasn’t until I had a second dose that the pain in my neck decreased. As the first one started to kick in I got very groggy and tired since I slept little the night before. I guess I asked if my kitty was up there. My wife and the nurse looked at each other and just shrugged. You should build a take your pets of the hospital, right? They did blood tests and x-rays to make sure I didn’t have a more serious condition and sent me home where I was able to finally sleep. I talked to Myra neurologist today and he thinks the Valium is a good option for the future. Knowing that that is available should help me overcome my fear that I developed of going to bed. It is horrible waking up with the spasms. It also horrible to almost be asleep and have them start like last night.

I have to say I’ve been really struggling with my disease and its symptoms. I’ve tried to maintain a hopeful attitude but my last hospital visit and the pneumoniae had ever pushed me into an attitude of hopelessness. I feel bad about this attitude but as they used to say at LeFebure decades ago “if I didn’t have a bad attitude I wouldn’t have any attitude at all"!

blog problems

I’m testing out my ability to run my computer (PC) hands-free. I find I can run Kindle fairly well. I have switched from iBooks to only Kindle books now. The screen on my PC is much easier to read than on my iPad. Other applications are not so easy. The Facebook application is very strange. It starts out that I can page down but if I go to any link and view the connection I lose my voice recognition capability.

Closing Facebook and reopening it does not help. Rebooting my computer does but then I have to reenter the access code and then reload the voice recognition and starting over with Facebook. Not very easy. Sometimes it’s too difficult and so I cannot keep going. Also when in the Facebook app the voice recognition just quits working. Sometimes everything quits working in the Facebook app and I cannot even use the arrow keys which are difficult for me to run. Very maddening.

I am making this post in Microsoft Word. The voice recognition works pretty well. Sometimes I cannot correct things without manually doing them. Again this is a hardship for me and sometimes are not able to do. I’m finding computers very frustrating. The voice recognition software does not work very well with Windows 8. It is not really compatible with Windows a applications. I can move the mouse and click it but it is very slow. Sometimes I say mouseclick and it hears “mouse grid” which jumps to the old windows seven window and I have to start over. I’m very disappointed in the voice recognition and it’s current capabilities.

Another gripe I have is that Apple included commercial free iTunes radio when you purchased filesharing capability between devices. I listen to this every day. Now when I go to it and goes to a pop up that makes me purchase Apple music to get iTunes radio. They want 9.99 a month for this service. This is very annoying since I feel like I already purchased this. Hundred and $120 a year is just too much. I ended up downloading I heart radio. I now listen to Kiss Country. I used to listen to this when I worked. It’s not commercial free but it is free. A former coworker had told me she listens to it on her phone.

To put this on my blog I create it in Word, copy everything, manually open my blog and then paste it into my blog. It is a little difficult but I find I can do it if I try hard enough. Sometimes it takes 10 minutes to coordinate the applications and running my mouse with the knuckle of my small finger. Since my hand is curled up by then but it is the only way to run the mouse. I keep trying to run it by voice but I think that will take much more practice.

puppies

Puppies
Last Sunday we went out to my wife’s sister’s place near Vinton. This cute one in the photo is named Molly. It is half lab and half German shorthair. The mother had a litter of eight puppies. Every one of them looks like a chocolate lab. All of them have a small amount of white on their chest or stomach. They all seem to take after their mother and have a good temperament. While we’re there they played for about an hour. Then they all went to sleep at the same time and didn’t want to get up. Too cute for words!

Trigeminal neuralgia update – February 1

Earlier this year my neurologist referred us to the University of Iowa neurosurgery for procedures they can do for my trigeminal problem. My wife took me down there a couple of weeks ago and we met with neurosurgery. They could do a procedure called a rhizzotomy. I’m not sure I spelled it correctly but phonetically it is right. In this procedure they use a needle with an and they can heat and they kill part of the trigeminal nerve as a block to the pain.

We were also told there is a radiology procedure where they use a high-dose of radiation to kill the same nerve. After we were down and neurosurgery we met with the radiologist. It was a long day. We originally decided to do the radiology choice. After we got home we started thinking more about it and change our minds to the rhizzotomy. The radiologist had told us that I needed an MRI so he could determine if a MS lesion was near this nerve. If there was not he still said the chances of that procedure working were 50-50.

The more I thought about it the more the radiology choice seemed a poor one. Too involved a procedure and another MRI for 50-50 chance of success. I will know right away if the rhizzotomy was successful. Another problem with the radiology choice was it may take six months to find out if it worked because it does not destroy the nerve immediately.

One side effect of both procedures is that when the nerve is killed I will lose feeling in some control of the right side of my face. It is possible my jaw will droop in my face.. Unfortunately these are my only choices since the medications are not as effective as we had hoped.