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.

Macy and Atlas

These photos are from over Christmas vacation. Is still incredibly difficult to run my PC but I have to see how much I can do in my current condition. Tom took these pictures when he was here between Christmas and New Year’s. They show Macy in her little nest between my knees. She loves the new bedspread. She got more tolerant of the dog and won’t leave when she’s in her nest. She defends it.

You can tell by the look on his face that the kitty intimidates him. He wants her to like him so bad. In one of these she is giving him the stink eye and he doesn’t know what to do. Poor puppy!

Update

It is been quite a while since I posted on my blog. I wanted to update how things are going. As you can probably guess they haven’t been going the best.

On Christmas evening two of my sons, took me to the new Star Wars movie. It was really good. While there I noticed a pain in my rib area, in the back near where my kidney would be. I thought it was just a slight bruise but when I woke Saturday morning the pain and moved to the front. As the day went on the pain increased and moved to the side. It started reminding me of when I had the infected kidney stone 1 ½ years ago.

That evening my wife and I went down to the emergency room at St. Luke’s. After CAT scan and blood tests they determined I had pneumonia on my left side. Probably a UTI also. I was admitted so they could administer an intravenous antibiotic. After the first day of antibiotic there was no change and I had actually gotten a little worse. Sunday night was the second round and I woke up Monday morning feeling a lot better.

The hospitalist then I could go home and continue the antibiotic with tablets. He also said I would always be susceptible to pneumonia and UTIs due to my MS complications. My breathing is very shallow and this causes germs to be trapped in my lungs rather than exhaled. The antibiotic caused me to be nauseous so I went on a antinausea medication middle of the week. I think I’m past these two infections now for the time being.

One last thing fact is that my right hand no longer functions very well at all. Is often curled up in a ball similar to my left hand. This makes it difficult to use my PC or iPad. I’m not sure if this is totally MS related or might be a response to the trigeminal neuralgia medication I went on a month ago. It’s probably partly both. My Primary care physician is initiating I request with my neurologist to see if a permanent solution could be found to my trigeminal neuralgia.

Due to this loss of hand use I am not sure how much I can post on my blog or Facebook in the future. I will attempt to if possible but with everything involved with this disease it just gets harder and harder and never easier. I hope everything is going good with my readers.