Well .. . . I'm still here!

After my wife locating another person with MS who also has a blog 'BBHwithMS' , a very positive young mother with four children from Seattle, Washington, whose journey with MS has paralleled mine very closely, including the use of the Segway as a mobility device, I sent her an inquiry which she answered very quickly. Also like me, she has a particular bent toward helping others with MS. She has been used as a motivational speaker on several occasions. Her blog, which she, unlike me, has kept up on a very regular basis. It bears being checked out.

As for me, it has inspired me to post again.

Needless to say, a lot has happened since my last post which I will not try to update all at once, but a little at a time. As I reviewed my earlier posts, I noticed that there were several points in time in which I wrote about 'being in a holding pattern' while waiting to begin a new medication routine. Interesting because it seem that here I go once more. My MS began many years ago as the Relapsing - Remmiting Form where there would be a period of worsening symptoms followed by a remission where my symptoms would come back to a point where they left off, but not all of the way. Over time that form of MS has morphed into one called Primary Progressive, which is self explainatory. Since I began my very first medication regime in the mid 90's, I progressed through several medications as each newer on became available. As my MS worsened, each of the medications became less effective. Of the total MS population, those with Primary Progressive make up only about 15% of the population. Of the different types of MS, this one is considered to be the worst one, with no treatment options. Until now, that is. MS research has had several breakthroughs over the past 15-20 years. Prior to the mid 90's the only available treatment for MS symptoms was steroids, which had their own negative side effects. Since then to today there are over a dozen different treatments on the market.

Back to the new medication Ocrelizuma, which treats MS by depleting the immune cells that produce antibodies to attack the myelin. 

It was expected to be approved by the FDA in Mid-January, but the decision has been reset for March 28. In anticipation there are still a few hurdles to be jumped over such as availability and insurance approval. So once again there is hope!

Ampyra - Bring It on!

Ampyra is a medication given to persons with MS in order to help them walk better. Due to other factors, like my Balance Vest, my walking ability is like the weather, constantly changing. I have started going to a new neurologist, seeking a fresh outlook of my condition. Anpyra was the latest in a growing number of treatment options available to those of us with MS. Since one of the several side effects of Ampyra is seizures, it was strongly recommended for anyone with a history of seizures to avoid it. I had a strong history of seizures when I was diagnosed with encephalitis when I was 14 years old, sometimes having from 3-5 + daily. My previous neurologist did not prescribe this medication for this reason. Discussing this with my new Dr., and since it had been 50+ years since I last had a seizure we decided to give it a try. I began the twice a day oral pill 6 days ago. Many reviewers stated that it had done wonders for their condition, while others didn't notice any difference.

After just 2 days on the drug, I was noticing that my walking (still with a cane) was improving in that my stride, particularly on my right side had significantly increased along with my walking speed. So now, I too, am a believer. I hesitated to mention my perceived improvement to anyone lest it be associated with a placebo effect, but I am beginning to believe that what I'm experiencing might be here to stay for a while. My wife reminds me each day to take the pill, which I usually have already done so.

There is another newer medication, Lemtrada, which was just approved by the FDA last week after being rejected this past summer. It too offers a new level of hope which I had been told by my previous neurologist that 'there's nothing else out the for you and it doesn't appear that this will change in the near future'. Although we had a great deal of respect and admiration for him, we left under good terms and am grateful that he was there when we needed him.

Thanks, but new hope is back in my corner and that gives me something to be thankful for this Thanksgiving.

2nd Sunday

The 2nd Sunday in October has been designated as a day encouraging exercise as well as physical health. I have been on a committee to plan the event since its inception.
In past years, the event has been moved to several different locations, this years' being held at Evans Apple Orchard just outside of Georgetown. A gravel trail around and through the orchard was designated for walking. The event was well attended.
My job at the actual walk began at the very first function was to use the Segway to ride around the trail and provide water or any needed assistance. I always give away a lot of cold water bottles. The weather was beautiful and a great deal of fun was had by all.

Update 1

I am going to attempt to cover some of the major happenings during my journey with MS since my last posts. After I finished my Tysabri treatments, I began taking the new oral drug Gilenya, which I am still using. I really don't know if, nor how effective it really is. The problem being that I have no way of knowing if I would be better off now if I wasn't taking the drug. There's just no way to know. It does, however, most definitely appear that I'm still slipping somewhat downward. My balance, as well as fatigue remain a problem. Mobility-wise, I'm not as well off as I was this time two years ago and am still using a cane as well as my Segway, although not depending on the Segway near as much as I used to. Just a few weeks ago, I started going to physical therapy once a week. There we are working on my leg strength and my balance, along with a few other problems. The balance problem is what motivated me to begin the therapy sessions, which I plan on covering in a later post. In addition, acupuncture proved to be very effective way for me to handle some of my MS symptoms. Again, I plan on detailing those experiences in later posts. Due to the medication regimen I have been on, I have, for now at least, reached the top rung on the ladder. In the words of my recently past neurologist 'right now there is nothing else out there for you'. When I heard that, I felt as if any hope whatsoever that I had of being able to handle my MS symptoms had been dealt a severe blow. But right now more recent developments and information has helped to shed new light on the situation. Hope has returned once more and there seems to be some 'bounce' in my step again. Once again, more about that soon. For now however, I'll leave with this thought - For me at least, without hope, there is nothing.

Where have I been?

EGad! I just realized that it has been a little over two years since I posted anything new. In that time a lot has happened during my journey with MS, several things which might be helpful to others. My goal is to share some of these relevant happenings a little bit at a time. My motivation began with a phone call from a follower inquiring about the Segway and taking note of the fact that the site is still getting several hits (one day earlier this week it was hit 13 times - most from a Segway chat forum). I still am using my Segways although not as much as I used to. Part of that is due to my slowing down somewhat from either advancing age and/or MS, or most likely both. It still travels with me to malls, Kroger, the movies as well as any other place where a long walk is required. And I still use it to run errands in our town. I still have my love of riding it and actually prefer it to using the car whenever appropriate. Although I still haven't figured out how to get my heater and windshield wipers working during inclement weather 😉. Hope this is not too boring and plan to post more updates before the next two years pass. Would love to hear any comments or suggestions from you, my email address is garyprtt@yahoo.com

Nashville - Not TN, - Instead Indiana

We took an overnight trip to Nashville, Indiana staying in a beautiful bed and breakfast wedding chapel named 'The Abby Inn'. We stayed in a suite with a jacuzzi room. The Inn served as a wedding chapel. I decided it was a neat place to visit, but if I ran into any Elvis impersonators, I was out of there!

My wife, Wanda pictured in the 'Wedding Gazebo' - Chintzy but very nice. Nashville IN has been a favorite place for us to visit over the years. The small village is well known for their upscale arts and crafts shops.

'Minding My Mitochondria'

This post title is in quotes because it happens to be a book that has thus far had a huge impact on my travel down my life path with MS. The book was referred through Email interactions with another fellow MSer who contacted me through this blog. Dragana (her name) mentioned the book authored by a doctor with MS who is on the staff at Iowa State University. Basically, Dr. Terry Wahls espouses a natural approach to handling her MS through changing her eating habits. After reading her book (post title), I researched the idea further and found several other writings recommending a similar approach. Each book was written by a person with MS and as with the disease itself, each showing differing results, but showing outcomes ranging from much improved to astounding. I adopted a gluten free, sugar free, dairy free, preservative free, processed foods and added hormones free way of eating in early January of this year. Reading the previous statement might make one wonder, 'What's left?' Talk about a major change for me! For years my food intake consisted of a diet rich with milk, ice cream, chocolate bars, as well as other junk foods. After acquiring and reading the book 'Minding My Mitochondria' by Dr. Wahls, I thought the idea of me attempting to deal with my MS through new eating habits (I hate the word 'diet'), was depressing and near impossible. But what the heck, what did I have to lose? I spent several days moping around the house dreading what I was about to do to myself. I can't say it has been easy, especially when eating out at a restaurant or pot-luck type dinners, but after being free of most of my previous eating habits, I can honestly say that it has been easier that I thought. At first, the change was difficult, but after five months it has become a habit and now the idea of a Big Mac, Whopper, Pizza Hut pizza or any other fast food (except Chipolte's) has actually become distasteful. Bottom line question, 'Have I seen any improvements thus far?' There have been some noted improvements. Overall there is a sense of felling much better. Measurably, my cholesterol dropped dramatically (almost in half) to a very low (for me) 114. In addition my high blood pressure has followed suit and will sometimes bottom out at numbers ranging from 175/75 to 125/85. Not bad for an old bugger like me. One symptom which is worsening is a weakening of my right leg. I am currently in the process of having the latest Bioness device set up. The purpose of the unit, which is coordinated with my current unit, is to send an electronic shock to the upper hamstring muscle resulting in better leg lift. Will post update soon.

Greetings From the Lab Rat

As of this moment, I am sitting in the Associates in Neurology office here in Lexibgton, Kentucky performing my duties as a real live lab rat. Today is one of my all day sessions. I get checked out by the research doctor every two hours after an experimental dose of controlled release Baclofen, or a sugar pill placebo. I don't know if my dosage is one of three different amounts of the drug or just the placebo. The doctor comes in periodically and checks the flexibility of my leg muscles. In addition, I get stuck with an IV in order for a nurse to take blood samples.

I have the Segway in the back of my SUV and may go out for a short 'fun run' because of the beautiful weather, sunny and warm.

Lab Rat Happenings

I have been slower to post now than I used to. Rack it up to my old age. No, Seriously, I have been working on our church website. I took it over a little over a year ago and kept adding to it, so that now it can take quite a bit of time depending on what is taking place. I am beginning to learn to manage my time better, so I can return to posting more often. My lab rat experience is now in the third week. I have had two meetings with the doctors, obtained my medication which I am now taking. I have been placed in one of four groups, three of which take a different dosage of the medication, while the fourth group takes a placebo. It is a double blind study in that no one, even the doctors do not know who is getting what. I have been given a small electronic diary which I fill out four times a day, answering questions ranging from both the quality and total hours of sleep along with my perception of the degree of spasticity (the subject of the study). Info is uploaded daily to the group controlling the study. Thus far I have had two appointments which lasted between one and two hours. This week, I am scheduled for an eight hour session, most of which will be spent sitting around after taking a dose. I will occupy my time reading or using my Ipad (might even play a game or two-or three) I have wondered many times which level of medication I am taking. Depending on how I feel at the time, my thoughts range anywhere from taking the placebo to being given the highest dose. In addition, I have begun to follow many of the ideas put forth in the Dr. Terry Walls book, 'Minding My Mitochondria, not the easiest thing I've ever done, but I have adopted a strict diet of no gluten, no sugar, no dairy, grass fed beef and pork, and free range chicken. I have been a fan of Montel Williams for a long time and now the direction of his approach to handling his MS has taken a very strong nutritional turn. I will also try to keep my posts updated to include this area. Even though it's been a warm winter thus far, my Segway riding has slowed . Although I am beginninng to rely on it more as a mobility aid as the advancing degree my MS slowly marches on. A lot here, but there is a lot to tell. Will keep plugging on. Thought for the day: 'Everything will be better in the end, so if things aren't better, then it's not the end'- Anonymous

It's Been A Long Time

Yesterday afternoon my grandson came into the room and said "Grandpa, you haven't posted anything on your blog since November." Egad!!, I realized that he was right. My excuse is that procrastination is one of my stronger traits as I have fully intended to but kept putting it off. Quite a lot has happened since my last post, but I will try to be brief. My physical abilities seem to have declined somewhat. The Segway has slowly crept back into my day to day functioning. I never really quit using it entirely, but am beginning to use it more often. I am back to using a cane, which I don't really like, but it does keep me from falling. Lately, I have taken a couple of tumbles because of loss of balance. The last one occurred about a week after the New Year when I fell backward while getting out of the car, and ended up hitting my head very hard on the pavement. I didn't go to the Dr. but am sure that a concussion resulted because of the incident. I am still recovering from that spill. Now I somewhat understand what Humpty Dumpty went through, although I didn't break anything. I am trying to stick with some new eating habits as espoused by Dr. Terry Wahl, Montel Williams, as well as a few others; no glutens, dairy, or processed products. This came about due to a correspondence with a pen friend in Canada who was following my blog and had experiences similar to mine. She mentioned in a recent Email that she was beginning to incorporate a nutritional approach to her MS symptoms and as I began to look into and delved deeper into this area, I decided that I didn't have anyhing to lose by giving it a try. Although the research concerning eating habits is mixed, there are several people reporting success. So far, so good, but its not easy, as I was almost addicted to chocolate and dairy products. Prior to changing my eating habits I probably drank at least a gallon and half of milk every week as well as putting away more than my share of ice cream. I hate to think how much sugar was going into my body. I'm going to try it for six months or so to see if I can notice any changes in my MS. We'll see. It's not at all a vegan approach as I still eat meat daily (grass fed and free range poultry) and can (and should) eat almost all of the seafood I want (I love seafood, but no fried - No prob Bob, as I never liked it fried anyway). I have entered a clinical trial, sponsored by the drug company, Biogen, involving different dosages of the drug Baclofen. I will try to keep my posting up to date concerning my experiences as a lab rat. In addition, I have just learned about a new oral MS drug, BG-12, which some are predicting may be the MS drug of the future. It has passed clinical trial phase three and is expected to be released either sometime later this year or early in 2013. Meanwhile, via a CNN crawler across the bottom of the screen, I learned that my current drug, Gilenya, is undergoing a new review due to some deaths both in Europe and the US. After looking into this further, I believe that the deaths occurred during the initial adminstration of the drug. I (as well as others who are taking Gilenya), was required to be under the observation of a doctor during the first eight hours after being given the first dose. As I'm still here and kicking, I figure that I'm not included in the statistical death toll. So for me at least, keep the Gilenya coming. Sorry about any spelling errors as I can't seem to locate the spellchecker function of the new updated blog poster. I say, 'Please ignore the errors as I'm typing Kentuckian'. (Meant to be funny, sorry if I stepped on any toes.)

Another Halloween

This October 31st we were visited by a group from Hogwarts Academy. Harry Potter himself, Professor Dumbledore and Hermoine made a surprise appearance. Another fun evening for Segwayman.

They jumped in and decorated the front of the house in preparation for Trick-Or-Treaters, then Harry Potter and Hermoine went out and gathered in a good load of candy while Dumbledore stayed and passed out candy, (keeping what was left over). This year I bought some real good candy, both to hand out and for myself after Halloween, but as Dumbledore left later in the evening, he dumped all leftovers in his bag, thereby depriving me of many small treats.

Georgetown's Festival of the Horse

The picture was taken recently on a Friday night visit to Georgetown's Festival of the Horse. The evening was cool but we had a good time. I got to chow down on a good ole' Funnel Cake - we all shared, of course.

Midway Railroad Festival '11

The Midway Railroad Days festival is one of our favorite, having attended the event for several years. As usual it was quite crowded and there were many vendors displaying their wares.

Main Street in Midway consists of shops, restaurants with a train track running up the center and on through the small town. The Segway has also been here a number of times and as usual, safely and comfortably provides me with adequate transportation. There are still a number of people who stop me and say "Except for seeing them on TV, that's the first real one I've ever seen."

Decision, Decisions, Decisions

A couple of weeks ago, I was faced with a most difficult dilema. In fact, it was the hardest decision I've ever had to make. That being, which MS medication should I choose? At the time I was on Gilenya, but during a routine visit with my neurologist, we talked about getting on the Tysabri wagon again. Initially, I was all for it. He told me about a clinical study to see if I had the antibody for PML (rare but very gruesome brain disease, which is described as most often fatal and if you do survive, then you might wish you were dead). If the test proved to be positive, then the risk of getting PML significantly increases. If I chose Tysabri, he explained that my present odds of getting PML would already increase from 1 in 1000 (when I initially began the medication), to around 1 in 100, because the longer a person is on the drug, then the greater the risk. Unfortunately,the results from the blood test administered when I entered the clinical study turned out that I did have the antibody in my system, which further increased my chances for getting PML. I was told that app. 38% of people do not have this antibody and therefore have no chance of contracting the disease. Because of me having the antibody, I figured my chances increased by 38%, dropping the odds to app. 1 in 62. I was much more comfortable with the 1 in 100 odds, but the further drop bothered me, in addition to the fact that the longer a person continued to use the medication,, then the odds increased even further. It is recommended that a person stop the Tysabri infusions after two years (I was scheduled for infusion number 36 when I swithched to Gilenya). Therin the dilema, as I knew that Tysabri had been so very good to me, what to do? I realized that the final choice was mine and mine alone. During the two weeks prior to my final decision, I went back and forth several times, both firmly committing myself to beginning Tysabri again, and then doing a full 180 and deciding to stay with Gilenya. I've never been in a spot like this before, and hope I never am again. I did talk to family members and two others who are close, asking for opinions, which came up exactly divided. Wanda knew what I was going through and left the decision entirely up to me. After much deliberation and prayer, in the end, I decided to stay with Gilenya - and not look back, as I don't want to be constantly wondering, 'What If?'.

T-Ball Grandpa

I have been wanting to go to a T-Ball game early on in my grandparenthood, but my oldest grandson is very cerebral and enjoys anything electronic, while my middle grandchild (girl) is much more a domestic, and then along came Sam, grandchild number three. And then T-Ball. I traveled to each game and even some practices via the Segway. Returning to home after a session was rained out, I got caught in a rainstorm of the magnitude of one in Noah's day. Since my windshield wipers don't work, I was at the mercy of the elements. My wife and grandson number 1 followed the route I usually took from the ball-fields and found me in a driveway along the way, soaking wet and my Segway had even stopped. This Segway doesn't take to water in the depressed area on the handlebar where the key is placed when starting up. One good saving grace is that the machine doesn't just stop and dump the rider, instead giving me app. 10 seconds of warning beeps before completely halting.

Summer Greetings

This post is being sent via my IPad 2. It's so much easier for me to type on the smaller keyboard with one hand. As far as my MS, I am still in a holding pattern awaiting fmy August 11th appointment with my neurologist. The last time I was switching medications, going from Tysabri to Gilenya, I was having an especially hard exacerbation which affected both my physical and mental states. It was the pits, a real low point for ne. I am to have another MRI prior to seeing him. I am very anxious to see if any changes have occurred since my last one whIch was done last December. Also, I am anxiously looking forward to getting back to Tysabri, which was working very well for me in the past. Knowing my body better than anyone else, I am certain that some changes have occurred. My right arm is even more useless than it ever was. In addition, my memory functions have become worse, but I am still hanging in there. The Segway has once again become more important to me. In fact I just returned from riding it to church. The weather here is somewhat cooler this morning and it is one of those days where all is right with the world and I just wanted to experience the sights, sounds and smells from the Segway platform while whizzing along at top speed (listed as 12.5 MPH. I might even take a 'fun run' this afternoon.
I am still amazed at people wanting to talk to me about the device, even after it has been out for app. 10 years. While in the Apple store at the mall with my grandson, I met the nicest lady who wanted to talk to me about the Segway. The next day she sent me a wonderful Email. Things like that tend to inspire me very much and give me added strength to handle my problems. Much thanks to her and others who have been so encouraging

Where the H*&^ Have I Been?

Even though it's been a while since I've posted I'm still here and kicking. Seriously though, quite a lot has happened since the last post. We have slowed down on our travels for a couple of reasons, the first being that we are getting a little bit older and neither of us has the energy we had a few years ago, the second reason has to do with the higher gas prices. Another reason is that I (along with my Dr.) are trying to halt the progression of my MS - one thing that anyone with MS can tell you is that MS is a highly individualistic disease with no two cases being alike, sometimes acting like totally different diseases.

I, and my Dr. Have decided that after six months on Gilenya, things are getting worse, so we're going back to Tysabri. Bring it on! That also means that I get to be with my Tysabri buddies again. Honestly I have missed them. Also I have entered a study, which is funded by Biogen, to determine if a gene which has to do with PML, (deadly brain disease) is in my system. All I really have to do is let them take some blood just once a year in order to see if there are any changes.

We haven't exactly been staying at home and have been out on short jaunts a few times which I will post about soon. Also, new grandson number four, who lives app. 175 miles away has definitely cut into our travel time. One more activity which demands a good sized portion of my time, is that I've taken on the task of redesigning and maintaining our church website. Undeniably a fun task for me.

The Segway continues to be extremely important to me, and is still just as much fun to have as it was when I first had it. A little while ago I went on a two hour fun and performed a couple of errands while touring the town.

I'll stop for now even though I'm having fun typing on my new IPad.

Waynesville, Ohio

We visited Waynesville, Ohio on a cool day in early April. One of the advantages of being an Official Senior Citizen is that you can repeat things (ie movies, TV shows and even visits and forget you've been there before, so it seems like a totally new experience). We figured out that we've been there before, but didn't remember what we did or where we went, thus a new experience. Initially I was going to walk the length of the small town and visit some of the shops (actually mostly just waiting while my wife and friend shopped), but decided to use the Segway, which was a good idea. I'm at the point now because of the Bioness device, actually walking moderate distances. However, my endurance begins to diminish as the day wears on and fatigue begins to set in. So it was a good move to use the Segway. I still take it with me most places and usually use it. The Gylinea is still 'doin it's thang', at least it appears to be so. As I once told a Dr. during a visit, I'm not sure if any problem I might be experiencing is due to MS or advancing age.

New Addition

Grandchild No.4, Daniel Joseph Bruno (aka Lil' Slugger) was born January 6th in Nashville, TN. Pictured with me at abt 6 weeks old when Wanda and I were in Nashville for a week babysitting while Cynthia (his mom) went back to her teaching position. My next youngest grandson, Sam Stacy, can hardly wait until he's big enough to play basketball with him.

As for me, Gilenya seems to still be working well. I had a checkup Dr. visit this past week where we assessed the progress of my use of the drug. So far so good. My speech still appears to be the area where the most pronounced difference is noted. Everything else seems remain stable at this point. We took the Segway with us for the week in Nashville, but did not even take it out of my vehicle the whole time we were there (I did keep it charged up while in the back of the SUV in order to try to maintain a healthy battery). I didn't do a lot of walking, however, except for a couple of short jaunts in the immediate neighborhood, which were done mainly to combat the restless leg muscles due to some physical inactivity.

The Things People Say

Over the last 7 years of my Segway use out in public, many comments have been made concerning the device. A few make me somewhat upset while the majority are nice and a few even make me laugh inside.

One of my pet peeves, which just recently happened is when someone refers to my Segway as a 'toy'. Once while leaving Sam's Club in Lexington, a father and daughter were behind me when I heard the daughter say 'Look daddy, what is that thing he's riding?' The father replied 'Oh, that's just a toy for rich boys'.
In Fayette Mall an older man commented 'Man that sure is a neat toy you've got there' to which I instinctively replied, 'To me it's not a toy'.
The first time I was in a store and was slowly gliding along when a family saw me and were making some comments to each other when the father said rather loudly, while looking at me 'Now that's ridiculous'. I thought 'Yep, having MS is ridiculous, you ought to try it sometime'.
As Wanda and I were entering the booth area at a recent festival, I overheard one of the workers in a food booth say 'Hey look, I wonder if he's really handicapped?' I wanted to reply something to the effect of 'Hey, why don't you come over here and ride this thing while I go over to your booth and make stupid comments'.

Most though are very nice. I get asked a lot 'How in the world do you balance that thing?' or, 'I've seen those things on TV but this is the first one I've seen in person'. I also get asked how 'fast will it go?', 'How much does it cost?' and 'Where can I get one of those'. After talking to me for a few minutes several people have said something like 'I sure am glad you've got that thing'. I can tell that they mean it too. Makes me feel real warm inside.
It's not uncommon at all for me to be in a store with the Segway and someone will come up to me and ask 'Do you work here?' I have received many offers to help me load it when I'm getting ready to get it in my vehicle. Makes me see the good side of people.

The funniest thing that someone said was when Wanda and I were at the Brass Band Festival in Danville, Ky and were in a line to get some lemonade from one of the vendors, when a young boy (7th or 8th grade) was right in front of me and turned around and was eyeing the Segway rather closely , saying things like 'Neat, or 'Cool'. I told him that I use it because I'm handicapped, to which he replied, 'Boy, I sure can't wait 'till I get handicapped'.

But the most common reaction I get when a person sees me on the machine is to smile, again giving me a warm feeling inside. And I do get a lot of smiles.

Gilenya After 3 Weeks

I began taking the new drug, Gilenya on December 21, posting a video on Youtube two days later. In the 1st video, I stated that I wanted to include regular videos in order to both share my experience with the very new drug (it was only approved by the FDA on September 27) as well as to provide myself with a recorded version of myself as I was taking Gilenya. The address of the 1st Youtube video is www.youtube.com/watch?v=hduvx-3chqo . The sound and video of this 1st post somehow got screwed up shortly after the video on Youtube was listed. Even then, the quality of my speech can be examined. The second video is included in this post. I do realize that the purpose of the drug is twofold. The first being to significantly reduce the number of exacerbations while the second is to reduce their negative effects on the body. But like Tysabri I have hopes that other areas may also improve. Time will tell.

At I write this, my wife and I are in Nashville where our youngest daughter has delivered our 4th grandchild.

The Segway accompanied us on the trip, but I didn't use it on the night of the birth, although several times I was wishing I had it with me. We brought the cold weather and snow with us and I have been somewhat sedentary the last few days. It felt very good to go out to the grocery today and rely on my Bioness L=300 to walk and stretch my legs.

Pre-Christmas Happenings

Well, I am in a holding pattern awaiting word from my neurologist concerning beginning the new medicine regime (Gilenya). I successfully jumped through all of the hoops required by Novartis and had an appointment with Dr. Blake Tuesday. I thought we were going to start the medication this weekend. But a few other things got in the way, one being that the medication has not been distributed yet to the Dr.s' office with the second being insurance approval. Dr. Blakes' office staff is working on both, even trying to hustle up some more samples (they have a two week supply) so that I can get at least a month head start while the very new drug is being distributed.

I don't like being in a holding pattern even one little bit. I feel like an uneasy tightrope walker who is beginning the trek across the high wire without a safety net underneath. I've done about all I can do at this point (that is, until I can think of something else) by making several calls to my insurance provider, Dr.'s office, even threatening to drive to the drug company myself in an effort to obtain sufficient medication for my needs. I can be a real pest when I want to be. I do believe that Dr. Blakes' staff is doing everything they can to help the situation. Just maybe, I'll have an early Christmas present. We'll see!

On a Cold December Day

As my dad used to say 'You look as contented as a hog on ice'. My two four legged friends are sitting with me as I read a selection from my Kindle. On the back of the chair is Annie and sitting beside me is Otis. Both are (non-shedding) Schnoodles.

As far as my MS, I'm still in a holding pattern waiting for the Tysabri to get completely out of my system and December 14, the day I meet with Dr. Blake in order to go over the results of my five exams and set a time for beginning with Gilenya. When I do have 'ups or downs' I miss the Tysabri infusions a lot. I know mid-December will come soon enough, but I feel like a child who is anxiously looking forward to Christmas.

As far as Segway news goes, I still get reminded of the owner of the Segway company riding his personnel machine off a cliff in England and falling to his death. I am very nice when I reply back by saying that 'I don't ride mine off cliffs'.

Secondly, I have nothing but bad things to say about slow Segway service. I took my main machine to the dealer in Cincinnati because it was quitting on me (it did give me the programmed warnings that it was about to stop, so no mishaps). I left it there before the first of June and didn't get it back until just a few weeks ago . It was sent off to the Segway plant where one of the main boards was replaced. Thank goodness I had a working backup.

Good News Mixed With Some Sadness

I met with my neurologist this past Thursday because I have been slipping a little in the last few months. These past months I have not been very truthful when responding to the nurses who administer the Tysabri when they asked me five questions concerning my current condition. The first two being "Have you had any new symptoms?", and "Are any of your symptoms worsening?" along with three others. Knowing how closely the Tysabri infusions are monitored and knowing that if I answered "Yes" to any one of them, then the infusion would be immediately stopped, I chose to continue on with the medication. The Tysabri infusions have been so good for me that not only had the progression of the disease stopped, but I was actually showing improvement in several areas. I was fearful of stopping. I also knew that the risk of PML (a rare but fatal brain disease) increased the longer the infusions continued. Things were going so well that I did not want to be taken off the drug, even though longitudinal studies of those being on Tysabri for longer than two years have not been administered. I was to have infusion number 35 in the next weeks.
After our Thursday session it was decided that I needed another MRI to see what the progression of my MS was doing in my brain. We did the MRI yesterday and met with Dr. Blake immediately after in order to go over the results of the scan.
The great news was that when comparing my scan with one done almost two years ago, in addition to no sign of PML, there were no new lesions and the ones that showed up in the previous exam had not gotten any larger. I could not have asked for a better report. However, because I had to finally 'fess up and because I had been slipping a little, it was decided to discontinue the Tysabri. But on the good side (I hope) is that there is a very new drug, Gilenya (fingolimod) which was only approved by the FDA on September 22, which in the clinical trials, where double blind studies were administered, shows similar (or even better)effects on MS patients. I and two others from Dr. Blakes' office will become the first of his patients to try it out. That should occur sometime in mid-December. First, I have to jump through some more hoops in order to be accepted to take the very new drug.
I am sad to give up Tysabri, even though I know it might be the best move at this point in my journey. In the past I have always been able to thoroughly research various therapies which I have been on, but this one is so new that there is virtually no one to turn to in order to see what effect the medication might have. Plus, I have to be off Tysabri for two months in order to get any remnants of the drug out of my body. I call this a 'free fall' period. I will also miss the relationships I have formed with two of my Tysabri buddies, as well as the nurses at the hospital. In the past the nurses have always set up a special place for us and sometimes spouses. We have spent quite a bit of time together and have become rather close. I'm certain that we haven't seen the last of each other as Wanda and I have talked about going down to the hospital on our designated Tysabri day so we can visit.
I realize that this is a rather long post, but the last few days have been stressful for both of us and this is a way for me to get it off my chest. Thanks for listening.

A Very Royal Halloween

Halloween evening turned out to be a very special affair as we were visited by a royal family. AnnMarie (queen), Tanner (King) and Sam (Knight) made up the court.

AnnMarie and Sam returned from their trick-or-treating to help hand out candy while Tanner operated the fog machine.

September Update

The last days of September are here which will finally bring the hope of cooler and wet weather.

We haven't been going to fall festivals yet due in part to the hot weather, my recovery from my concussion and my recent Tysabri infusion this past Monday. I have decided that I am probably hopelessly addicted to the wonder drug because I can feel the need for it a week in advance. This is a rather common side effect of the drug as reported by many other users. My wife can tell both the pre-drug week as well as the after effects of the infusion because of the Dr. Jeckle/Mr. Hyde impression I sometimes take on during the week before/after the treatment. It is sometimes (like this past week) so evident that I am very aware of what is happening. DOUBLE YUCK!

We are going to the Chicken Festival in London (Kentucky, not the one in England) tomorrow where we will meet up with Tysabri buddy Jayna Alexander, owner of Carousel Florist in London (again not England ;-)). The festival is listed as one of the top 10 fall festivals in Kentucky. London is just a few miles north of Corbin where the very first Colonel Sanders' Kentucky Fried Chicken restaurant is located. The Segway will once again provide me with my mobility needs due in part to my Bioness not working well. Yesterday evening it sporadically stopped working like it is supposed to. The built in diagnostics showed that the foot sensor and the leg cuff were not communicating as well as they should. I will call Bioness today and I'm sure they will send me a new foot sensor unit which might be delivered tomorrow. Their service is both fast and efficient. Looking forward to tomorrow.

*&#$% - From a Fight Scene in Batman

That's what it felt like I was experiencing when I slammed on the tile covered concrete floor as I entered the foyer of our church while on the Segway.

This past Sunday we awakened to a beautiful morning, providing us with a respite from the hot temperatures plaguing much of the country this summer. In addition, my wife had to be at church early so I couldn't resist riding the Segway to the Sunday services. As usual I wore my 'Segwayman' helmet, taking it off as I entered the Sunday School area where our class met. After Sunday School, I rode beside my wife to the church sanctuary. Several women were in front of me entering the door leading into the main foyer. One woman was holding the door for me, but being the independent cuss that I am, I reached for the door and told her she didn't need to hold the door for me because I could do it myself. After all, over the past 6 years, the Segway and I have both literately and figuratively open hundreds of doors. As usual, I lined up the tires for the entrance and started moving forward. Two problems contributed to my upcoming rondevoux with the floor. 1) I was using my left hand to hold the door thereby not having contact with the left handlebar, where the steering mechanism is located, and 2) my left tire was lower than normal due to a very slow leak. As I was moving forward, lower air pressure caused the Segway to pull slightly to the left thereby messing up my alignment of the Segway tires so I could safely go through the door. As I moved forward while holding the door open, the Segway pulled slightly to the left which caused the tire hit the door facing. I went down, with the Segway and struck the hard floor with my head. BIG TIME OUCH!! A friend came to my aid and because I was temporarily stunned, to me he and others around him looked like big blurs and were not recognizable. After a few minutes I sat up and turned and did what any good cowboy does after being thrown from his horse, got up and back on the Segway (my horse) and rode into the main sanctuary. My wife was insisting that we leave and go home. After we got in the car, she said that should go to the emergency room in order to check things out. I agreed and off we went. After x-rays and a CAT scan it was determined that I had no broken bones instead having a concussion.

But 5 days later I am still having a hard time shaking the effects of my fall off. We went to my local Dr. this morning and his assessment was that it was going to take some time for my bruised brain to heal.

I want to end this lengthy post with a tale about my Dr. and his reaction. I reminded him that 6 years ago when I first came to him with a brochure about the Segway. I was trying to get insurance to help with the purchase. He looked at the pictures and told me that his only concern was that I might fall off and get hurt. I further told him this morning that it took me 6 years to make his fears come true. He very nicely responded by telling me that it has been such an aid to my mobility, that it definitely has been worth it. My sentiments exactly.

P.S. I have ridden it around the neighborhood several times since then. My feelings about riding the Segway have not been even mildly affected by the accident. I still have the attitude that I'm more comfortable on it than I am anywhere because of the way it takes care of me.

It Ain't Easy!

As I look back over the blog, I hope I haven't relayed the false feeling that my handling of MS has been easy. I don't like being around 'Pollyanna-ish' people and certainly don't want to be one myself. I do believe in being upbeat as it's certainly better than the alternative, however, I just don't see how everything can realistically be 'wonderful' 100% of the time. That type of attitude seems somewhat phony to me. However, I do feel that at least in some part, my coping with the effects of my MS has been affected by a positive attitude. I do still have a 'pity party' every once in a while, but they have (thank goodness) become much fewer and farther between.


So, even though some things are indeed very much better than they were in the past, I do realize that I'm still experiencing some of the ups and downs associated with MS.


The real 'pluses' for me have been :1-The Segway which has allowed me to do many things I would have otherwise found to be impossible along with permitting me to be with my family not only as we travel, but in many other endeavors. 2-Tysabri, which has definitely slowed the progress of the disease and has even positively affected several of my symptoms, in particular, my improved speech and the ability to tolerate summer heat. 3-Physical and Occupational Therapy which has allowed me to keep some of my motor skills workable. One of the more dramatic effects is evidence in the fact that my right hand grip (which was all but gone) has improved from the 5 lbs strength level when I was first tested, to the latest assessment which showed it measuring in at a whopping 43 pounds. I can even now actually move individual fingers on my right hand. Even my 'bird finger' is beginning to work - an old geezer like me needs to know that I can still use it if need be, huh? I actually can (and did) demonstrate my increased grip strength to both of my daughters and made them yelp and beg from them to release my grip, 4- the Bioness device which has allowed me to walk unaided ('cept for the device itself). I figured I have been shocked by the Bioness enough times over the past 15 months to light up a small town, but hey, who's complaining. I am still completely amazed by the device with every step I take, and 5-a neurologist (Dr. David Blake) who told me during one of my early sessions with him that his goal was to stop the progress of the disease while maintaining motor skills that I still had. I remember thinking 'Yeah, right', to which I have since laughed with him about this first reaction.

As anyone with MS knows, the disease is very 'individualistic' in that no two persons symptoms are alike. In addition, one thing which works for one person, might not have any effect whatsoever on another. I do not want to even slightly imply that something that has been making my journey easier will work just as effectively for others.

A friend politely asked me at church Sunday how I was doing, to which I replied 'I just keep trying to put one foot in front of the other'. And so far, I've been able to do just that. And that makes my very happy.

Hilton Head 2010

The entire Pruitt/Stacy and Bruno clans traveled to Hilton Head in late June for a week of fun. We rented a house in Palmetto Dunes (where they welcomed me and my Segway). I have very unfond memories of not being able to ride it in the Shipyard Plantation three years ago. I get asked a lot about what kind of terrain it can travel through, most commonly being asked if it will go on or through sand. Above is a picture taken while traversing through loose sand on the way to the beach. It goes well through the sand if it is not being asked to take me up small hills or rises. I do have to coax it. But when I reach the harder sand near the oceanfront, it flies like the wind. It is truly exhilarating to ride it fast with the wind in your face.

Sam became an avid fisherman after catching his first fish of the day. That's almost all he wanted to do the rest of the week. His dad, Mike, and his Uncle Tracy enjoyed catching small sharks in the surf. They said they were baby sharks to which I replied 'If those are the babys, that just means Mama and Papa sharks are out there somewhere'. Lookout for 'Jaws 4'. Mike even caught an adult stingray.

AnnMarie with a 'monster' of her own. We considered eating both fish for supper, but weren't too sure if they would feed 9 hungry mouths.

Tanner, enjoying a Segway ride while on the beach. Notice the circle pattern in the sand just behind the Segway where Tanner was showing off doing 360's.

Segwayboy Arrives

Grandson No 1, Tanner, was just 5 years old when I got my 1st Segway. He couldn't wait to ride it, but I told him that you had to weigh 100 lbs. in order to be able to ride. (I later found out that this was not quite accurate when I was at Kroger and stopped at the milk cooler to get a gallon of moo juice. I opened the cooler door, got off the Segway in order to reach the milk on the bottom shelf, then put it on the Segway platform, closing the door. To my utter amazement and surprise, the Segway started moving away from me on it's own, because the weight of the milk had activated the sensors. I had to reach for it very quickly in order to avoid any awaiting calamity. Whew, close call.) Tanner would come in from kindergarten every day and weigh himself. After a while, I told him that he could ride it whenever he was going into 5th grade. Well, 5th grade is in his immediate future, so he got to ride it for the 1st time this past Friday. I put the Segway on the slower key, then showed him a few things and then let him ride it in the yard and on the sidewalk. As with the meeting of young people and technology, he took to it like a duck takes to water. He later told me "Grandpa, I've had more fun today than I've ever had." I can't wait to get my other one back so we can ride around the side streets in our subdivision like we did when he got his 1st scooter and bicycle. One down and two to go (grand kids, that is).

Ohio Trip

Pictured above is the final resting place for the Wright brothers. Originally the plain markers designated the place where they were buried. The monument and flags were added later.At the Dayton Air Museum the original Wright Flyer was depicted. Standing there on my Segway, I wondered what the Wright brothers would have thought about my mobility device. I bet they would have loved it, almost as much as I do. There was a lot of walking required, hence my use of the Segway throughout the museum. The museum personnel were very accommodating, telling me more than once that I could use it while in the museum. Wanda standing beside one of the Air Force One planes at the museum. A whole seperate hanger housed more than just a few of the aircraft used by U.S. Presidents. Every aircraft designated as Air Force One (except the one currently in use) were on the site. The free museum trip (which was free), is highly recommended.

Last week we took a short excursion to the Ohio town/city of Yellow Springs stopping by Dayton the last day of our 2-day trip. Yellow Springs is an interesting community largely comprised by artists and shops. Our kind of place. The stop off at Dayton was for us, the highlight of our trip. Felt great to be out again. Next stop - Hilton Head later this month with the entire Pruitt/Stacy/Bruno clans. While we were in Dayton we visited several of the Wright brothers locations. They are two of my favorite historical personalities.

On the Road Again

Everything has worked out very well at this time. The Bioness's problem was indeed battery related and after installing a newly charged one and adjusting the battery holder in order to make firm contact with both poles, I am happy to say - "It works".
As far as the Segway, I have ordered a rebuilt set of lithium batteries (an upgrade because my main Segway came with the standard set of Ni-Cad batteries. They should be here any day now and I'm anxious to see how they will work. They are supposed to give me twice the riding time, going from app. 10-12 miles with the old ones, while the newer Lithium batteries are supposed to get me around for app. 25 miles. We'll see.

Minor (I Hope) Setbacks

When it rains, it pours. Yesterday afternoon when I was out on the Segway, all of a sudden it stopped. It did give me time to get off of it - thank goodness. And (I got fussed at for it) I didn't have my cell phone with me. So, a couple of friends/good samaratians came along and asked if I needed help. I borrowed their cell phone to call my wife for a pickup. Then how about this for a coincidence, my Bioness stopped working. I thought about just going home and hiding under a pillow for the rest of the day.

As far as both of them (Segway and Bioness) it appears like the reason for the failures is a battery issue with both devices. Both of them have been virtually free of any problems. So, I talked to a battery specialist and have ordered two lithium batteries for the Segway. Definitely not cheap, but I hope worth it. Second, as far as the Bioness is concerned, I just finished talking to my sales rep, Lisa Trofetter. She is very knowledgeable about the Bioness system. Per her instructions, I then phoned the Technical Support Dept. at Bioness. The bottom line is that there is probably an issue with the battery in the stem unit which is contained in the leg band just below my knee. After talking with Lisa, I realized that I am a very heavy user of the system and therefore it's probably time for a battery change. I am now recharging the unit in order to see where the problem is actually located. Both Lisa and the Bioness Tech Support group are very competent and I do feel confident in what they tell me.

Stay tuned as I'll relay the results of what happens. Believe me when I say that I can't possibly get around without one or the other of the two devices. I hope this is just a minor setback.

The Tysabri Filling Station

Pictured above is our 'Tysabri Group' picture, taken on an April Monday morning visit. From left to right are Me, Wanda Graves, who is from Jackson County, and Jayna Alexander from Laurel County. St. Joseph's East hospital has a setup by which two persons are usually placed in a small room just across from a nurses station. However, when we come along every 4th Monday, they set the space up for 3 people. We spend the time talking and sharing stories and discussing what Tysabri is doing for us. The time goes by very quickly. Wanda and I always look forward to seeing our two friends again. Wanda Graves brought us some goat cheese and goat soap (yes, goat soap). Wanda and her husband, Louie, live on a farm in Jackson County and have several goats. Jayna owns and runs a florist shop in London (Carousel Florist, http://www.thecarouselflorist.com/).

I'm glad we met and continue our relationship.

Great News

This past Wednesday, we traveled to Lexington to get an MRI and follow-up visit with my neurologist. The main purpose of the visit was to compare my MRI's with ones taken previously in order to determine what changes were taking place. After the MRI was completed, we went to Dr. Blakes' office for the news. I was hoping for the best and got it. The bottom line - no new lesions in the past year as well as no increase in the size of existing lesions. In other words, I'm holding my own. About three years ago, during one of my routine neuro exams, Dr. Blake told us that his goal was to stop the progression of the disease. I remember asking him "Do you really think that's possible?" Now, I am a positive thinker, but that seemed like a bit much, setting an unreachable goal. I was to begin the Tysabri regimen soon thereafter and didn't anticipate what was to be because of the monthly infusions. One of the prerequisites of Tysabri is that the patient must have tried other injectable therapies which were deemed to not be working. I had been on Avonex for app. 5 years switching to Betaseron (every other day injectable) for another 5 years. I calculated that over the period I had given myself over 1600 injections. Did the PML deaths associated with Tysabri even concern me? No, not even one little bit. I readily signed the papers absolving Biogen of any blame if something did go wrong. Now this coming Monday, I'm due to take infusion number 25. Biogen, which manufactures the medication, has not done any longitudinal studies as to the effects after being on it for more than 2 years, but once again, I'm willing to take a chance, even telling Dr. Blake that if someone tries to take me off the medication, they'll have to fight me first. I mean it too.

With the primary three things I have tried (and am still using), 1) the Segway, 2) the Bioness system and 3) the Tysabri infusions, each has contributed immensely to my feelings of well-being (at least for a person with MS) in a major way. This afternoon, I actually plan to go out and walk my dog for app. 1/2 mile (an activity I have done several times since getting the Bioness. I still use the Segway around places where a lot of walking is required, especially if I'm feeling somewhat tired. It's still a lifesaver to me. I can't wait until it gets warmer outside so once again, I can go out and ride just for fun.