Trigeminal Neuralgia – Post procedure Follow-Up

I am home now after the follow-up visit to the University of Iowa. I was able to report to them I have had not had any pain in my right cheek and jaw. I did have to tell them there was actually numbness in my upper lip and around my eye on my right side. I told them this was mostly a nuisance. I was very happy that I have not had any pain.

I asked about the chances of pain returning. I was told this happens in about 20% of the cases. The nerve can regenerate and if it does I may have to have the procedure again. Of course this may take years to show up. I told the doctor I gave it an A minus. This was because of the extra numbness we were trying to avoid. The doctor was very funny and pounded on the desk saying he wanted an A+.

I find my speech is slurred a little bit due to the numbness in my upper lip. Also I have to chew much slower. That’s probably a good thing anyway. So for now the procedure was a success!

Back to Reality

Tom and Atlas have been here for over a week. It was spring break at the Tom college teaches at. They went home Tuesday, so today it’s back to normal. It’s so different without them I feel pretty spoiled when they were here. Tom is such a help and Atlas is a sweetheart. The only bad thing he does is he barks at perceived threats. Many times we can’t even hear what he’s barking at. Strangely, he has quit barking at the mail person. He and Macy are starting to get closer to getting along but she is still a stubborn mule of a cat. I have to admit the days seem longer without my companions Tom and Atlas that I’ve enjoyed for the last week.

Macy has been a little more affectionate toward me when it’s just her and me. Just enough to keep me hooked on my sweet little kitty!

Tomorrow I go back down to the University of Iowa Hospital for my check up on my Trigeminal procedure. I hope to have a good report later in the week from my visit.

Wonderful Monday Visit

On Monday one of my wife’s sisters visited along with Carson and Lucy the cute little doggie. I was not up yet so they came to visit me. Lucy is a snuggler and was very happy to sit on my chest and get petted. Atlas joined in the fun, you can’t leave Atlas out. Janette sister didn’t want to get in the picture because she didn’t want to get me in trouble. You know me I’m always in trouble!

While Tom was getting me up, Carson and Atlas went outside to play. I wondered who would wear out 1^st, Carson or Atlas. When we got out there Carson was throwing the dummy for Atlas to retrieve. Then they switched to a tennis ball. Then Tom and Carson played frisbee keepaway from Atlas. Long story short: Atlas wore out long before Carson did!

Lucy was content to snuggle on my lap most of the time. It was chilly in the shade but when I moved into the sunlight it was very very comfortable. It was nice to get out of the house and have a visit from Carson.

Easter Weekend

I had a pretty busy Easter weekend. Friday night we went to Cedar Ridge for my wife’s sister’s 50^th birthday party. I think I had fun but I got in trouble too. I guess me and alcohol are not always a good combination. Enough said.

Easter Sunday Tom took me to church. Got to say hi do a few people I haven’t seen for a while. In the early afternoon we went to my wife’s aunt’s house for Easter dinner. I ended up falling asleep and taking a nap. Course the food was great and the desserts were spectacular. I stayed away from the wine!

Afterwords Janette’s sister who just turned 50 and her husband brought over one of the little puppies that they kept out of the last litter. She is a yellow lab and German shorthair mix. She is cute as can be. This is a photo with Atlas. They played together and if we held Atlas back she could get to the tennis ball 1^st. The 1^st time she got it she ran off with it so no one can take it from her. It was very funny. They played together pretty well after she warmed up to him. She’s a pretty sweet little puppy.

At the name of Jesus:

I was enjoying these verses in Philippians yesterday. I thought I would share them on my blog but not on Facebook.

“Let this mind be in you, which was also in Christ Jesus: Who, being in the form of God, thought it not robbery to be equal with God: But made himself of no reputation, and took upon him the form of a servant, and was made in the likeness of men: And being found in fashion as a man, he humbled himself, and became obedient unto death, even the death of the cross. Wherefore God also hath highly exalted him, and given him a name which is above every name: That at the name of Jesus every knee should bow, of things in heaven, and things in earth, and things under the earth; And that every tongue should confess that Jesus Christ is Lord, to the glory of God the Father.
Philippians 2:5-11 KJV

Cuba

It is Tuesday afternoon and I am watching a baseball game between the Tampa Bay Rays and the Cuban national team. Before the game until about the 3^rd inning Pres. Obama and his family were in attendance. This seems very strange and wonderful to me. When I was growing up in Omaha we practiced atomic war drills. This was in this early 60s during the Cuban missile crisis.

We practiced hiding under our desks. The idea was the brick of the building would protect us from the initial blast and hiding under our desks would protect us from the roof caving in. Since we lived in Omaha we knew it was at target of a nuclear warhead from Russia. The Strategic Air Command (SAC) was down by the airport in Omaha. Because of this we knew Omaha was a clear target. During the Cuban missile crisis Russia set about building nuclear missile silos and importing missiles into Cuba.

I can’t say anyone was ever sure that the Cuban people agreed to this but what Russia said then Fidel Castro did. President Kennedy risked nuclear war with Russia over the issue. Either way you looked at it Cuba was a pawn between the 2 nuclear powers. Course everyone was thankful the Russians back to down and took the missiles out. One of the key ingredients in the strategy of “mutual destruction” was the oceans that separated the 2 nuclear powers. These distances meant either side would have enough time after a launch that a response could be sent.

So here we are 50 years later and relations with Cuba are finally starting to thaw. Pres. Obama and his family visiting Cuba seems like a fantastic thing to me. I know there are many issues and yet to be resolved but hopefully Cuba will be less repressive in the future.

Mood Swings – Hope

As most of my readers know I have been plagued with pain in my right side of my face due to trigeminal Neuralgia. In February I had a procedure to stop the pain and so far I’ve been pain-free.

I was very surprised when a week ago I woke up in a very foul mood. The Best I could achieve was to feel blah all week long. My moods swung from sad to blah all week. I thought on this a lot – shouldn’t I be in a good mood because the pain was gone? I realize that before the procedure I was filled with hope.

I was hoping that the procedure would help me. Now that it was over and it was successful I realize my hope was gone. All that was left was my MS symptoms which will never improve. They will only increase as time goes on. I spent all week feeling hopeless. I realized at the end of the week that I needed hope. Would I trade the pain with hope for no pain and no hope? No, I spent a week in the dumps because the hope that had sustained me was gone . A friend of mine always says “hope is good”. So that is what I learned last week. Hang on to hope because no matter how bad things are, it is hope that sustains us.

After coming to terms with this I found this week my mood has improved dramatically. I’m not feeling sorry for myself. I’m finding things outside myself to think about. Self pity and hope do not mix. I am much better this week and I’m glad for the mood swing back!

Monday Morning – Atlas the Wonder Pup

it’s Monday so I don’t want to post anything serious. Tom is here for a week or so and so is Atlas. Tom was away last night and our son Matt came over. He fell asleep during some of the NCAA March Madness games. Atlas had been bringing Matt up for ball to throw. Matt fell asleep and the dog brought a bowl and put it on his shoulder. He didn’t wake up and so Atlase thought bringing another ball might be enough but he ended up very disappointed. His picture is so cute. He wants to fetch the ball so bad.

Another Visit from Tom and Atlas

Tom and Atlas are here for another extended visit. Tom is going to the NCAA basketball tournament in Des Moines. Yesterday morning Macy was on the bed with me for her morning brushing and chin scratching. The silly dog came in.

It was very entertaining. He wouldn’t get up on the bed because the cat gave him the stink eye. He went and got one of his tennis balls and then he would get up on the bed. He thought for sure the kitty would want the toy. He would drop it by her and I had to protect him from the vicious kitty from hitting him in the nose with her paw. So in this photo I’m actually holding the cat back. She has no claws so the dog is safe. He brought a 3 different balls but she didn’t want to play. He just can’t figure her out. Later in the day he brought her a toy that is sort of like a sock puppet but she wasn’t interested. He was so disappointed, he thought for sure she would like that one.

Every time Tom and Atlas visit Macy becomes more comfortable with him. Now she will sit on the couch that he is on as long as Janette sits between them. Maybe someday they’ll actually cuddle.

Differing Neurological Disorders

I spent a couple of nights at the hospital late last year. It was due to pneumonia. Since I was feverish my MS was made worse. I was almost totally paralyzed and could barely move my right arm and hand. The care I received from the nursing staff made me realize some of the differences between neurological disorders that produce paralysis. The nursing staff (1 in particular) treated me quite different than I had ever been exposed to.

She brought in some device that squeezed my legs from ankle and up the calf to aid blood flow. She also supplied a set up that included a nylon pad that went under my entire body. It had and grips on it so I can be slid around easier on the bed. It also included 2 foam wedges that could be put under one side of my back and hip. This was to take pressure off the same spot in my back. I would be left like this for a few hours and then they would move the wedges to the other side. At home I am always on my back in my bed. It was quite a few weeks before it dawned on me that she was treating me in the same way they would a spinal damage quadriplegic.

The other day I saw video on Facebook that talked about progressive MS. Putting together that and my treatment at the hospital I realized how different some of these neurological disorders can be. While I am mostly paralyzed I have not had problems with bedsores. One doctor told me this is due to the fact that I still have feelings in my extremities. I can feel when I’ve been sitting or lying in the same spot too long. I can still move a little bit and when I’m in my chair I can change the tilt and the back position that I’m always resting on a different spot I may end up suffering from bedsores but right now I don’t.

So some of the differences are that a quadriplegic or paraplegic may have had spinal damage. This prevents any feeling or movement in their affected extremities. They are very susceptible to bedsores. This is because they cannot feel anything in their extremities. So they must be very careful in the cold or near hot. They cannot feel when things are freezing up or burning. In my case I can feel when my legs or arms or hands come in contact with heat or cold or touch. I don’t think the one nurse understood how different my paralysis is than someone who has had spinal damage.

Can’t say that I really understand my disease very well. I’m told the nerves that are affected are only motor nerves. This leads to some tingling and nerve pain but nothing like that true paralysis that comes with spinal damage. I’m also told my disease has not affected my organs. I really don’t understand how my disease can paralyze me but leave my muscles capable of spasms. The muscles seem to work okay and the spasms are a big problem. Like if my arms spasms and my hand runs into something immovable the spasm will sprain my fingers quite easily. If my legs get trapped underneath me like when I slide off of things while transferring the spasms would probably tear muscle. It seems strange to me but MS is what it is.

I’m told that people with ALS, whose symptoms are somewhat similar to mine many times, have a much greater probability of their organs being affected. ALS seems like the worst possible neurological disorder/disease. Some people have a very short life after the onset and some people live for decades with the disease. Again I really don’t understand it.

So back to my main point and I do have one, all paralysis is not the same. MS related paralysis is different than ALS related paralysis and spinal damage related paralysis. Of course all 3 of these are serious but I do not have some of the same problems that the other 2 diseases I have mentioned are exposed to. While studying the neurological disorders, because I have one, I have found their much more extreme diseases than what I have. I know what I have is serious and my heart goes out to all my MS friends, spinal damage friends and ALS sufferers.

Donald Trump – Hitler? No but…

I keep seeing where Donald Trump is being compared to Hitler. While I am not a fan of Donald Trump and could go on for quite some time about the negatives I see in his campaign, I can not compare him to Hitler. What is comparable to the Hitler era is how some of his supporters are acting.

When Hitler started his politics he used similar rhetoric like “he was going to make Germany great again”. He did do this but at what cost? The thing that seems the most similar to me right now is the similarity I see to Hitler’s “Brown shirts”. This group acted entirely on their own but used Hitler’s rhetoric to physically dominate that society. Hitler was never alone in what he did in Germany. He had support and the Brownshirts used physical domination to help his rise to power. They often used clubs to bash the heads anyone who protested Hitler.

This is what I see as a fearful thing. Not so much Trump but the violence that accompanies him. The media needs to blame Donald Trump for this but there is another group of people that is responsible.

Another Visit from Tom and Atlas – Matt came over also

We had another enjoyable visit that included our wonderful grand puppy, Atlas. Tom and Matt wanted to get a picture of the cat and the dog in the same shot. Not very easy. Macy did not like to be held down or be held that close to the dog. Atlas doesn’t even really notice her a lot of the time. He jumped up on the arm of my chair and is such a happy puppy. He doesn’t know how to deal with the mean kitty. This picture was the best we could get.

Kindness Toward Us – Ephesians 2:7-10,13 KJVS

I have been trying to find a Bible application that does everything I wanted to do. So far I’ve downloaded about 8 different apps. So far I’ve still have to do different things with different apps to get what I want. I found a new app that has references and cross-references. Maps and commentaries also. I can select verses and email them to my PC. The only thing this new one doesn’t do is read it to me. The app that reads the Bible to me is too difficult for me to copy verses out of. It’s pretty hard to use control key functions when you can only use one finger.

I’m not really complaining but it would be nice if one app could do everything. As it is I still enjoy reading and may end up reading it in one app and having a different one read to me. This morning I have been enjoying the book of Ephesians. What stood out to me is the tiny portion of verse 7 “his kindness toward us”. I included surrounding verses because they also add so much.

[7] That in the ages to come he might shew the exceeding riches of his grace in his kindness toward us through Christ Jesus. [8] For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: [9] Not of works, lest any man should boast. [10] For we are his workmanship, created in Christ Jesus unto good works, which God hath before ordained that we should walk in them. [13] But now in Christ Jesus ye who sometimes were far off are made nigh by the blood of Christ. 

Reading – Part 2

My routine lately has been for my wife to get me up around 9:30. She gets me breakfast and I listen to Christian music while I eat breakfast. While I have the TV on Price Is Right with the sound muted. After I finished eating breakfast I read a Kindle book on my iPhone. I recently upgraded to the larger iPhone the iPhone 6 plus. It is large enough that I can read iBooks or Kindle books. I thought I would be able to read my Bible I have but it will not turn a horizontal to match my phone’s position on its stand.

A friend of mine from church, Mel, told me of an author by the name of Joel Rosenberg. He described them as current event type thrillers. I’m currently reading a series he wrote called the “Last Jihad” these books are very fascinating and the author shares so much knowledge about current events, military procedures and governmental procedures. There is so much in these it’s too hard to describe. I’ve become addicted to this series. I find I have to live by myself in one or 2 chapters a day to make them last. So why listen to Christian music I read this series. In it are some characters that know the Lord. It doesn’t dwell on that but build it into the stories in a very realistic way so that their faith comes out.

Reading these is like having the birthday cake and then I have to stop so I don’t take into much. Then I read, and have read to me, 3 chapters of Scripture. Then around noon I start reading my other books like the Return to Treasure Island. Occasionally I will watch a movie that I have recorded on TiVo. The problem with watching a movie in the afternoon is that I tend to fall asleep.

Then at 4 PM Jeopardy is on. Jeopardy is probably one of the highlights of my day. It’s not number 1 but it’s pretty high up there. I feel so smart when I know the answer and none of the contestants do.

At night I’ve been reading in iBook that is the history of the Mongol Empire. At the height of its empire it spanned from the Mediterranean Sea (Syria) to the Pacific Ocean. It is a pretty interesting history book. It appears the only thing that saved Europe was a lack of wealth. The Mongols easily defeated the European armies of Budapest and could have easily conquered all of Europe if they had desired. What is interesting is that the Mongols were as barbaric in some ways like their reputation. They were also more civilized in some ways opposite of their reputation. They were very good at integrating the conquered people into their empire. Using the conquered peoples assets and treating them as equals. As long as the people paid their tax to the Mongols they were left alone. I’m about halfway through the book and it is good reading for bedtime.

Reading – Part 1

I have found that as my hands lose function I’m spending more time reading. I can no longer operate the TV control very well. I can operate TiVo from my iPhone or iPad but as far as turning the TV up or down in volume I still need to use the remote. I’m glad for the TiVo app on my iPhone and iPad. The PC app has never worked. I tried emailing the company and never got an answer. So as a result of the more difficult operation of the TV I have gone to reading more.

I joined a website called Book Bub last year. They have books that range from a dollar to $4 at the most. This is been very good because I don’t feel bad about getting a $2 block and never finish it because it’s not what I wanted. I found some very interesting books. Some are a little tedious but fill the time. Most are pretty good and worth reading.

The titles of some good ones have been “the Last Moriarty”. Of course it was written by Doyle but a newer author that tried to copy his style. It was pretty good. I read another one called the “Island”. It was about an island off of Crete that was home to lepers. It was a fiction based on truth and was quite interesting. It spanned 3 generations of a family that had 2 different generations of women who came down with leprosy. I’m sure I never would’ve read it if I hadn’t founded on book Bub. I read one called the “Resurrectionist”. It was centered in a pre-Civil War South Carolina medical College. It was very difficult to read. The subject was about a slave that was purchased by the school and his efforts to secure cadavers for study. I didn’t really enjoy it.

I like science fiction books but in finding there are very few authors that I enjoy. Most of the science-fiction books on Book Bub have not been very good. There been more than a few that I couldn’t finish. One nice thing about this website is that you order them on Amazon as Kindle books a few are available on iBooks. On my PC I can only read Kindle books that is what I mostly order.

Right now I am reading a book called “Return to Treasure Island” it supposes the children of Long John Silver and another character in the original treasure Island set out on the return trip to the island. They are looking for the remainder of the silver that was left behind. What they find is a group of sailors and slaves that occupy the island along with the 3 Englishmen were left behind. These people came from another shipwreck that our main characters did not know about. They are now attempting to free the slaves and still find the silver. It’s really quite a good book. I am really glad for Book Bub.

Journey

I’m sitting here thinking it’s kind of funny. I’m not in pain, no real spasms that fatigue me. I’m feeling pretty good. I still get worn out toward the evening. What is funny is I don’t have anything to post now. Bad times seem to produce a lot of thought. Good times, like right now, I can’t think of anything to post. I feel a little guilty about this. I know trials bring out the best in us but shouldn’t the good times bring out joy in us too?
Why do I feel closer to God when I’m struggling? Now I’m feeling pretty good and when I read the Scriptures my heart still soars. I’ve been reading in Galatians and there are so many great thoughts there I have to admit it’s a little overwhelming. So things are going pretty good right now all things considered. I’m very thankful to my God, my caregivers and my friends for all their prayers. Maybe I’ll feel up to adding a few Bible verses to my posts. It is very difficult because I still can’t find a Bible app I can copy versus out of on my PC. I still have to look them up on my iPad and then email them to myself. Then copying them for my email into my posts. This is very trying since my hands don’t work very good and the voice recognition only will do portions of what they need.

Trigeminal Update March 9

There’s not much to report but so many of you have expressed concern for me I wanted to give you a new update. My last update is pretty much the same as now. No pain in my lower right jaw or cheek. There is some additional numbness in my right eyebrow, right side of my nose and my right upper lip area.

Some of the outcomes they discussed in my preprocedure meeting:

Not eliminating the pain.

Biting the inside of my cheek or tongue.

Drooping face, cheek or mouth.

Drooling from the corner of my mouth.

Additional numbness in areas not specifically targeted.

Of these warnings the only one I have to deal with is some additional numbness that wasn’t specifically a targeted area. It’s been 3 weeks since the procedure and I can report the pain is still gone. The extra numbness I have is a nuisance. All in all so far this is been a great trade-off. Numbness traded for pain. If it stays this way “I’ll take it” it won’t be till the end of the month that I meet again with the neurosurgeon. My one question I will have will be “how often does the pain return after an immediate success like I have experienced?”

Not sure when I can declare this procedure a full success but for now it’s good.

Hummingbirds

My brother-in-law posted a fascinating video of hummingbirds on my Facebook page. He knows how much I love hummingbirds. We have 2 feeders that I can see at the front of our house. Unfortunately last year we didn’t see as many hummingbirds. There were 2 things that may have contributed.

We have 2 large locust trees in the front yard. We would often see the hummingbirds flit from these trees to the bushes below our window and to hummingbird feeders. Last year we had these locust trees trimmed. There were a few larger branches we had taken off because I was afraid one might fall on the neighbors house. They really cut out a lot of the foliage on the lower part of these trees. This may have contributed. Without this cover the hummingbirds were probably avoiding these trees.

We also added a finch feeder. Perhaps the activity at this feeder The hummingbirds away. The finch feeder was fantastic though. Is made so that the sparrows cannot feed off of it. The finches must hang upside down to get the food. They are able but the sparrows are not. As entertaining as the finches were it was his entertaining seeing the sparrows get frustrated trying to hang upside down. They would fall off the feeder.

I’m hoping the locust trees fill out a little more this year and we get the hummingbirds back.

MS in the Media

I was very surprised the other night while watching one of my favorite shows “Elementary” which is on CBS. It is a show with the modern day Sherlock Holmes and has Lucy Lu as Watson. I really like this show and have not missed an episode. There is a character, Capt. Gregson, which had been dating a former detective. In this episode one of the threads was that Capt. Gregson’s girlfriend broke up with him. It seems strange since they were getting on so well and Capt. Gregson wanted to marry her. She gave a reason for breaking up with him that her past as a detective would interfere with his role as police captain. Both characters are in their 50s.

Watson realizes there is something more to her breakup and encourages her to tell Capt. Gregson the truth. She finally comes clean with him and tells them she has progressive MS. Her prognosis would lead her to be severely affected by this disease. Watson confirms this to the Capt. Gregson that is indeed a very serious disease and that they can expect a severe disability. Of course Capt. Gregson makes it clear that he still wants to marry her in spite of the future.

This is the 1^st time I’ve seen progressive MS in the media. Relapsing Remitting MS is by far the most common type. There are many commercials about medications to treat Relapsing Remitting. One in particular shows a lady hiking and ending up diving into a pool and coming out and going out for an evening with a man. I am so glad there are treatments for this type of MS. The type I have has no treatments. All the doctors can do is treat the symptoms such as spasms and such. It was nice to see accurate portrayal of the progressive type of MS in the media.

If you have primary progressive MS please note that the progression I outlined in some of my earlier posts is not typical. Mine has proved to be extremely fast progression. I know of no one with my type that is progressed as fast as me. Most plateau at a certain level of mobility and then it stays steady. Mine has not been so. I’m not looking for sympathy but don’t want to scare people who have progressive.

Politics – Surprises

I suppose you think I’m going to bring up Donald Trump. I’m not. To me he’s Teflon Donald. Nothing said about him sticks. Not much point in criticizing him or his followers. God bless all of you. I have 2 surprises that I never expected that have come up this last week.

1^st, I never thought I would disagree with Sen. Charles Grassley. I totally disagree with his position on the open Supreme Court justice. Pres. Obama was duly elected and has the right to nominate. Waiting for a new president would mean waiting at least 2 years before a justice would be seated. That’s too long.

The 2^nd surprise was that I never thought I would agree with Hillary Clinton. For months now when it has been said, we need to make America great again, I would think America has never been anything but great. Now I hear Hillary Clinton voicing the same sentiment. Anyone who says America is not great is a negatist and looks only for bad things to focus on.

My MS Journey – Addendum

I realized last night there were some things that I had left out of my series on MS and its effects I progressed from walking dragging my leg. Next step was using a cane and still dragging my leg. After this I used the power chairs available in stores and then usedin the cane to get back to my vehicle. The next step was using a walker. I didn’t mind the cane but I came to hate the Walker. Getting through doors with the Walker was pretty tough. I tried a manual wheelchair and that was even harder to get through doorways. Using a power chair was doable but still not very easy to get through doors.

A few people look at my use of a power chair and saw disabled person. I never minded my power chair except for getting through doors. I find I can live without my legs and there are many things to assist me in that area. I could still transfer to my seat in the car to drive. So the transition from walking to being in a chair was gradual and I was glad for the aid I got chair.

The next most significant changes to deal with were when I could no longer work due to my hands and about the same time I could no longer drive. Neither of these were is difficult to bear as I had imagined. I did find I missed the camaraderie of going to work and the routine. I did not really miss work, some of the people I worked with were very difficult. I didn’t realize how hard they were to get along with till I got away from them. The sad part was that I missed my friends. Some of my coworkers were outstanding and somewhere my work Angel’s. You would think I miss driving but I didn’t. I miss to some of the freedom that came with driving. I miss going to the coffee shop every morning and seeing my “little coffee girls”. I adapted very pretty easily to losing both work and driving.

The most difficult thing I have had to deal with physically and emotionally was when I could no longer get out of bed and into my chair on my own. A few months after I could no longer work I found I could no longer get out of bed on my own. This introduced I difficulty I really hadn’t expected. Fortunately my wife works about a mile from our house and they allow her to come home around 9:30 AM and get me out of bed. She also gets me set up at my computer stand and feed me breakfast. It is a very helpless feeling to want out of bed and be stuck. My caregiver, my wife, is outstanding in helping me. After be put back in bed also at night. Emotionally this has been my most difficult transition to deal with. I’m glad for my caregivers but do not think I have fully accepted this limitation.

Of course the important thing is that I can brush the cat in the morning now. That does make me feel useful. Of course the cat thinks we are here to serve her. LOL

Macy the MS Kitty – Progression

In all my installments about my health – MS, spasms and trigeminal neuralgia I have neglected to mention how these have affected Macy. Sorry for the omission. We were a little worried when we were looking for a different house. Macy loved our bay window in the front and would lay on that and look out the windows at the hummingbirds. We had heard it was difficult on cats to move to a new house. We expected she would go into a writing routine just as she did when we adopted her.

We were very happy and surprised at her reaction to our new house. She came in and it was as if she was destined to own this territory. She loves this house. She flopped down on the living room floor in the sunlight and rolled over on her back. We’ve been told a cat only adopts this position when they feel very comfortable in their environment. She found there were windows she can look out all over the house. I added a board near our bedroom window so she could jump up and sit in the windowsill. This is one of her favorite perches. We call it her neighborhood watch position. She polices the neighborhood!

One big change for her was when I started a trigeminal neuralgia medication late last year. It kept the pain at bay but it affected my hands. I could no longer hold the brush or scratch her ears and chin with my fingers. She became dependent on Janette for brushing. Turns out she is sort of a one person cat. She was relentless and constantly following Janette and meowing at her until she could get brushed. She still slept on my legs or stomach but she was Janette’s cat when Janette was home from work.

Then I had my procedure in late February. After 5 days I was no longer on the medication. I regained some use of my right hand. Now I can brush her in the morning as long as she stands on my chest while I’m in bed. When she sits on my lap I can scratch her ears and chin a little bit. This has produced a quandary for the kitty. Last night she got up on the back of the couch near Janette and stared and scowled at me. She’s now torn between 2 people. What a silly kitty! So does have to get used to being a two-person cat.

My Journey with MS – part 7

My Journey with MS. Last installment. My other ailment was trigeminal neuralgia. I've posted many things about that so I won't cover that over again.I did have a severe episode of MS spasms. I think I covered that one of my other posts.

My JoIn my last installment we had just purchased and moved into our home in the Glenwood edition on Pepperwood Hill. I was still able to walk some, still able to drive, still able to get from the front of the van to the back into my chair and still able to work. We thought this was a good move for number of reasons. I had expected to work until my retirement age of 67 so we can have the house paid off and keep building my 401(k). I was less than 5 miles from where I work. Of course MS had other plans for me.

The seller of the house, Deron, had quoted us a very good price to add a ramp in our garage. At that time I could not decide which direction it would go. To the right of the door toward the back of the garage or left toward the front of the garage. Since he needed to know which way I had to defer. Later my sons and I were able to construct a ramp that has proven to be very suitable. Before we had moved here I had purchased a Bostitch air compressor and nail guns. Since they were fun to use my sons argued over who got to use them.

We kept a ramp that I had made for the Alburnett house since it was not permanently attached. It fit right in the screened in porch. So now I had 2 ramps. I have a 7 foot portable and folding ramp. We leave that outside. I don’t use it at all really unless we take it somewhere to get into other people’s houses. It is weatherproof so it just sits out there because there really isn’t room in the garage for it.

When we moved here and had the ramps I felt like “we got this now”. I added a rod above the shower and a number of grab bars. I thought this arrangement would last for years. As my MS progressed faster than typical we were constantly adapting and changing things. The list is too long, and too depressing to go through. We lived here for a few years and my driving kept getting more difficult. My ability to get from the drivers seat in the my wheelchair became more difficult. Operating my computer at work kept getting more difficult. My ability to pull myself up with the grab bars in the shower became more difficult.

Almost 2 years ago now I was sitting in my computer and after about 10 minutes of use neither hand would operate anymore. I just sat there staring at my computer. I knew I was at the end of work capability. For years this was one of my greatest fears –. The end of work. Now it was a reality. About 7 years earlier than I had hoped. The transition turned out to be easier than I had expected. My employer was very helpful in understanding. For any long-term disability you have to be off for 3 months. My employer covered my salary with their short-term disability for those 3 months. I can’t say applying for long-term disability and also Social Security disability was easy. It was not impossible and I was approved for each as I became eligible.

About a week before I was done with work I had an eye-opening experience driving. As I was driving along Collins Road extension I approached the intersection with a traffic light that is near Menards’s the light turned red and I put my foot on the brakes to slow down. My foot slipped off the pedal and was stuck behind. I could not pull my foot back. Fortunately one of the 2 lanes was open with no cars. I ended up going to the intersection just as the light turned red. It really scared me though how close it was to a collision. Janette started taking me to work and picking me up. Not long after that I was done working also. So I lost my ability to drive and work very close to the same time.

We found that carpet and my wheelchair are not the best combination. When we moved in here the carpet was brand-new. After a couple of years it was stretched out sticking up like a potato chip. Janette found a suitable flooring and she installed most of the new floor. It seems impervious to damage from my wheelchair.

Bathroom became my biggest hassle. What seemed fantastic 2 years earlier became impossible to use because I could no longer pull myself into a standing position. The shower required a very small step to get into it. This was still too much for me. Since I was no longer working Iowa Vocational Rehabilitation Services no longer would work with me. I came up with a plan for the lower section of the new showers stall with a tiled floor level portion. This was equipped with a rubber sill so a shower wheelchair could be pushed into it.

About a year ago we contacted JVA mobility and they came out and installed a ceiling lift in the bathroom and then one in the bedroom. Equipped with a sling Janette could now hoist me in the bed, put me in the shower chair or help me with bathroom duties. She can still get me out of bed into my chair without it. She can also get me into bed from my chair without it. As my condition worsens it will be there to help. Right now it is indispensable for bathroom duties. Getting the sling behind me is the most difficult part. Supposedly you can leave the sling while I’m in the chair. The leg straps are quite long and neither of us can figure out where they would go to avoid entanglement during the day. Maybe someday we’ll figure it out.

The over the last 4 years of living here we’ve had to modify things we never expected. JVA mobility was really good to work with. Insurance covered the majority of the ceiling lift. They also worked with insurance to help me get a shower chair equipped with a headrest and that would tilt back. The shower chair I had purchased did not have a headrest. I could no longer hold my torso up. Right now this equipment is working suitably. Since there’s no telling how MS will go we optimistically hope this covers it for as long as we can see. Hope is a good thing.

My Journey with MS and Other Ailments part 6 – House Stories

In my last installment I was still able to walk some, still able to drive, still able to get from the front of the van to the back into my chair and still able to work. I could still do a few tasks around the house and use some of my power tools (even though Janette was very nervous about the power tools). We decided to find a house that was more suited to my future prognosis and then sell our Alburnett house afterwards. To me this was terrifying having 2 mortgages at the same time but it seemed like the only way to proceed.

So we started looking. We started looking at houses north of Boysen Road and west of C Avenue. There was also a condo addition in that area and we looked at some of those. What we found in the newer houses in that area that they would still need significant modifications mainly in the bathrooms. We Looked at some condos and found one that would probably have worked but it was 2 bedrooms upstairs and unfinished basement. It was right on the top edge of our budget and since the basement wasn’t finished it was really over our budget to get 3 bedrooms. There were some condos south of 74 Street in that area but they were all a little too small. There was a new edition called the Crescent addition. We considered having one built that would have handicap features already. The condo would’ve worked but the garage was the problem. The widest we could get was 20 feet. With ramp van that we knew I would eventually need this would essentially be only one stall garage. We asked if they had an option to increase the size of the garage but it would still stay in 20 feet wide. No help there.

Then we started looking outside our target zone at older houses still staying on the northeast side. We looked in Bowman Woods, Northwood Knolls and the area around Mount Mercy College. Without going into great detail we could not find a good combination of price, modifications required and garage size. We found some really neat houses but they were just too much for us to handle. I was pretty limited on what I could do so we had to take that into consideration.

Our realtor, Kris Watkins, was great. We’d set up a showing with her. She and Janette would set up the portable ramps that we had so I could get into the house since very few had ramps built in. They got to be very good working as a team! If the house seemed like a possibility they would help me down to the basement and backup. Kris finally suggested we looked outside the northeast side, to the southeast side. We reluctantly agreed and started considering some houses outside our “zone”.

About this time we found a house in Northwood Knolls that had handicap modifications. It had a finished basement so we could have dedicated one of the upstairs bedrooms as a new bathroom for me and still have 3 bedroom house. The garage would’ve worked and it has a nice ramp going up into the house. It had a huge room on the back that would’ve done well for family gatherings. The price allowed all these modifications and still stay within our budget.

At the same time Janette noticed an open house on the southeast side but it was so close to the northeast side. It was off 40^th St., Drive. It was about a block off of 1^st Avenue and we went and looked at. The house and had an owner that has lived there for many years but had moved out a year or 2 earlier. A construction guy, Deron, had purchased it and redone everything. He was flipping the house. We looked at it and found if it had a bathroom for me it would probably work. Working with the 2 realtors and Deron we came up with a plan to add a bathroom in the master bedroom. His price was attractive and everything together within our budget. It was a difficult decision between the house we found in Northwood Knolls and this one. This one in is in the Glenwood edition. Since everything was done except a couple of ramps we chose the Glenwood house that we are currently in.

Yardwork and house maintenance have been burdens to Janette and our sons but we have managed so far. Sometimes we think we would’ve been much better off with the condo but really there were none that worked for us without going $20-$30,000 over budget. We really enjoy this neighborhood and we are close to so many things including Janette’s work.

This latest installment brings us close to our current situation. There’s still a little more and I will follow up later as I have strength to do it. God bless all of you for caring about us.