This weekend I was patient lifted into my around the house power wheelchair. The sling from the patient lift remained under me. I sit on the sling.  It is like a grownup swing in a playground.

My Favorite Power Wheelchair

The power chair by Golden Technologies is my favorite power wheelchair.  It maneuvers well, it is easy to steer, and it easily makes it though all the doorway passages in my house.  It does not have a seat belt.  However, in the past, I have never fallen out of the seat until this weekend.

Eat Lunch

I finished eating lunch in the kitchen. All was well at that time or so I thought.

Front of the Cushion

After years of wear, the seat on the wheelchair lost its front cushion.  I had used the power wheelchair in this condition about ten times without incident.

Seat Me Right

Apparently, unless I am seated just right, with my back against the back of the chair, I will start to slide off the chair.  The leather like or vinyl covering on the cushion is grippy.  However the plastic underneath is smooth.  This allows for the seated person to side off the chair.  This is apparently what happened to me.

Set up the new Dustbuster

I had set up a new Dustbuster like vacuum in the kitchen and I returned to my bedroom.

Adjust Lift Chair

I adjusted my lift chair so that it was not so far forward, but I was not in the lift chair.

I Start to Slide.

I could feel myself slowly starting to slide off the power wheelchair.  I called for help as soon as I could, but it was too late.  My aid tried to patient lift me out of the chair.  As the patient lift went up, I slid further out of the sling and out of the power wheelchair.

The slow fall

It was a slow fall and I did not break any bones, however my leg hurt a lot.  I was on the floor.  People with Multiple Sclerosis sometimes suffer from extreme spasticity, and bend the knee can really hurt.  I had my aid straighten out my leg and leaving it straight on the floor relieved the pain.

Go figure?

But now I had to figure out how to get up and get into bed.  This is what I came up with.  Rather than call the police, the police in my neighborhood are really nice, I had my aide remove the patient lift to the other side of the room.  This cleared my legs.

Rock and roll on the floor

I was on the floor and the sling could be detached from the patient lift.  I turned from side to side so that the sling could be placed under me.  After the sling was properly positioned under me, I rolled myself face up.

Bring it all back

I had my aide bring back the patient lift.  The patient lift can not go to the floor, but it doesn’t have to.  It has chains and the two long chains make it to the floor.  The long chains are attached with hooks about at my knees.  I have a baclofin pump.  Baclofin is a muscle relaxer, which means I have virtually no trunk support. I am a paraplegic, but my arms still function.

Grab the chains

I grabbed the chains attached to the sling by my knees and pulled myself up to a sitting position.  Since I was in a sitting position, sitting upright, the shorter chains for the sling no longer needed to reach the floor.  The sling could be picked up off the floor, and the short chains could be attached to the sling behind my back.

Start and stop

My aide could begin to lift my up with the patient lift but then had to stop.  My legs were under the patient lift, and the patient lift had to be moved back so that my legs were clear of the patient lift.  This had to be done slowly.

Make sure my legs are clear of the patient lift.

It also had to be done a couple of times to make sure that my legs were fully clear of the patient lift. Once my legs were no longer under the patient lift, and were fully clear of the patient lift, I was lifted up with the patient lift and placed in bed.

Good things come slowly

This took some time, but it got me back into bed.  All was well.

Comments

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Out with the old.

We had a Sony clock radio, but as time went on, it became increasingly finicky to set the clock.  It was also difficult to set the alarm.  It was useable, but it was a real nuisance to set, especially for Daylight Saving time.  Eventually, we were so frustrated that we decided it was time to buy a new clock radio.  We really did not want to set the time on the clock every time for daylight saving time.  If only there were an alarm clock radio that could set the time all by itself, and not cost a small fortune.

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Enter the Emerson SmartSet Clock Radio.

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The Emerson Clock Radio is smart enough to set the time for you.  Never again have to worry that your clock is 3 hours wrong.  Never again miss appointments and meetings because your clock indicated the wrong time.  The clock receives a signal telling it the right time.  Of course, if the clock is prevented from getting the signal, it does not know what time it is, but how often are you in an air raid shelter 100 feet below ground?

SmartSet technology

Under most normal circumstances, the clock has no trouble setting the time by itself.  The SmartSet technology on the first use sets the correct year, month, day, time, and date.  According to Amazon, we ordered the Emerson on March 12, 2018, and it has been working great to this day.

Month/Date display

Touch a button and the clock displays the correct month and date. The Month/Date button will give you the month and date numerically.  For example, May 20 will appear as “5.20”.

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Grab Big Blue

The clock features a large easy to read 1.4 inch time Blue LED display.  When you are old and sick like I am with Multiple Sclerosis, the big display is welcome.   Also, it is easy to grab and hold from the bed as the back is cut out and provides an easy grasp.

The everyday, weekend or weekday alarm

The alarm clock can be set to wake you everyday, Monday through Friday, and on Saturdays and Sundays.

Two Alarm settings

It has two alarm settings, so you can set it to wake you one time on weekdays, and another time on weekends.

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Radio or buzzer

It can be set to wake you to FM radio or a buzzer.

What about Leap Year?

It automatically sets itself for Leap Year and Daylight Saving Time.  It keeps the correct time when the power returns in power outages.

Does it wake you with a sudden jolt?

The alarm buzzer grows in loudness so you don’t get a sudden jolt waking you up.  Of course, it has a snooze button.

What if the power goes out?

There is a button cell battery (included) which maintains the time and alarm settings, so if you do go into an air raid shelter 100 feet below the ground, it will work – it just needs to get the signal the first time it is turned on.

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Is it bright enough?

It has two brightness settings. You can easily read the large LED display from across the room.

Can it play music from my iPhone?

It has an Aux In port so you can connect a music source such as an iPhone to the clock.

But can it charge your phone?

It has a USB charging port so you can use the clock to charge your iPad/iPhone/Android and other tablets.  I don’t know about you, but at our house, we are always losing those little chargers.  We have found it much harder to lose a clock.

It has Dual Alarms.

To change the alarm modes you depress the Alarm 1 or 2 button, and the Week Button at the same time to set the alarm for everyday, weekends only or weekdays only.

How’s it sound?

The sound quality is very good for an inexpensive Clock Radio.

Recommendation

I highly recommend this Clock Radio for anyone who wants to be on time.

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Comments

If you have any comments or questions please feel free to leave them below.

The Apple MacBook Pro.

This is a review of my son’s newest Apple MacBook Pro.  His previous Apple Macbook A1278 got him through high school and the first semester of college.  However, the touchpad locked up, and I tried to unlock it.  I needed a t7 tool to unlock it, but even with the t7, I was not able to unlock it.  The screw was starting to strip and I gave up before it was too bad.  I had my son buy a mouse, and the Macbook worked fine with the mouse.  However, the need for a mouse made for an unsatisfactory experience.  The Apple store refused to touch the 7 year old Mac, and would not repair it.

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New Mac time

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It was time to get a new MacBook.  We looked around on the internet, but more importantly he needed it fast for school.  We needed to know what was in stock at the local Apple store.

Quad Core i5

My son went to the local Apple store and found the dual core i5.  I asked him over the phone whether the store had the quad core i5.  They did but at a higher price.  Still, a quad core (in my opinion) beats a dual core any day, so we went with the quad core.

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More software, please

Typically the Apple store tries to sell you on additional software.  If you need it, so be it,  But you can often get a better deal if you install your own software.

Retina display

This MacBook has a Retina display with True Tone technology.  This is very nice, but in our house, the Mac is often used by multiple users, making the technology more of a nuisance than an advantage.  We just don’t use the Retina technology.

Touch ID

It also has a Touch Bar with Touch ID.  This is also something that we don’t use.  It is pointless to try to use this when you have peanut butter on your finger or a bandaid on your finger.

Graphics

It has Intel Iris Plus Graphics 655, which means the display is beautiful.  We are not video gamers, but I suspect most simple games will play well.  As a home theatre card, the 655 will work well.  You tube videos look great.

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SSD

It has an Ultrafast SSD.  I don’t know how fast, but it boots up in seconds not minutes like the old Mac.  Having an SSD, and only an SSD (not combined with a hard drive) makes this Mac super fast.  Instead of a standard hard drive with a motor and platers to read data off, an SSD is like a giant (it’s actually rather small) flash drive.  Just like there is no motor in a flash drive to break down, there is no motor in a SSD.  You don’t have to wait for the platter to start spinning, because there is no platter, and no motor.  This also means less noise.

Thunderbolt 3

It has 4 Thunderbolt 3 USB-C ports.  These are super fast connections to your computer.  USB 3.1, which is very fast at 10 Gbps, is bested by Thunderbolt 3 at 40 GBPs.  That means it is four times faster than USB 3.1.

Where is the USB?

However, I was expecting Apple to include Thunderbolt 3 to USB 3.1 so that files and data could be transferred via a flash drive.  No such luck.  If you want to transfer files using a USB flash drive from your old Mac to your new Mac, you better buy adapters for it, because Apple does not include the necessary adapters.

Battery life

It has up to 10 hours of battery life.  This depends on what you are doing with your Mac, but it is enough for the typical school day.  This assumes that your typical school day is not crunching video in a video production course and not photo editing, and not writing code for advanced video games.

Wi-Fi anyone?

It has 802.11 ac Wi-Fi.  Ac is the latest greatest and fastest Wi-Fi.   However, it is not any greater in range.  Meaning you cannot go further from the Wi-Fi source.  It is 3 to 5 times faster than n, which was way faster than g.

Big touchpad

It has Force Touch Tracpad.  This means it has a larger, easier to use touchpad.  This is really convenient on a 13 inch laptop.

What operating system does it have?

It has macOS Mojave (the new Mac operating system) with Dark Mode and easier screenshots.  Mojave seems to be working fine and I am having no problems with it.

Where is the power button?

Apparently, the Touch ID button doubles as the power on/off button.

Recommendation

I strongly recommend this Mac to everyone.  The quad core Intel chip works fast, the SSD is ultrafast, and the 8 GB of RAM is enough to move this laptop from the mondane to real excitement.

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Comments

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Cold spell.

On the east coast of the United States, we are having a cold spell, and while the season for space heaters may be drawing to a close, I decided to let you in on what has been helping to keep us warm all winter.  We have baseboard heating, but sometimes this is just not enough to keep a room toasty.  We actually own the Pelonis NT15-13C Heater, however this heater is currently unavailable on Amazon.  However, I have found a heater which looks substantially the same and appears to work the same as the Pelonis.

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It’s a Hurricane

It is the Hurricane Tower Heater.  I can not vouch for Hurricane as a manufacturer, but it is on Amazon, and is probably good, but I can vouch for how good this space heater is.  It has 1500 watts of power and fills the room with heat in the winter.  It has a low and high setting.

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Does your heater have a remote control?

One really cool feature is that it has a remote control.  This means you don’t have to get out of bed to adjust it each time. This can really help a disabled person and is a convenience for anyone.  The remote requires two AAA batteries.

A nifty stick heater with style.

The heater has a digital LED display.  It is 24 x 8 x 7.25 inches in size. It is 7.15 lbs. in weight.  It is a really cool looking stick heater.

It oscillates

In one place on Amazon it says it is a 70 degree oscillating heater and in another place it says it is a 90 degree oscillating heater.  I do not know which it is, I can tell you that it can fill an average size bedroom with heat.

Thermostat action

It has an adjustable thermostat, and the thermostat shuts off when the desired temperature is reached.

Tip over protection

It also has a safety tip over protection.  I have tried it, and the heater turns off when it tips over.  In truth, it takes about half a minute to shut off, but it does have tip over protection.  It is ETL tested and certified for safety.

Time to assemble

It does require some assembly.  I had to screw on the base.  The necessary screws and bolts came with the unit.  Since I am bedridden with Multiple Sclerosis, I actually assembled the heater in bed. While assembling it in bed requires a balancing act in bed, I can attest that it is doable.  It only takes a few minutes to assemble.

Get your room toasty

People with Multiple Sclerosis often prefer cooler temperatures as I do too.  However, there are times when a warm bedroom is preferable.

Put it in the cold bedroom

The heater is now in my son’s bedroom since his room gets colder than our bedroom in the winter.

Going strong

According to Amazon I purchased this heater on November, 19, 2017.  It is still going strong.  I highly recommend this heater.

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Comments

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The never ending story.

My Multiple Sclerosis life story continues, but really has no real end.  At least I’m not quite sure how it ends or if it ever does.  In 2012, after my operation installing the baclofin pump, I continued to see my neurologist.  My neurologist is involved in a multitude of clinical studies, and it was not long before I became a guinea pig once again.

Time to consider Shingles

This time it was Shinges.  No, I don’t have Shingles, but when I was at the nursing home, recovering from the effects of the front and back surgery of the baclofin pump, I met another recovering patient.

It is all about Ted

I really don’t know his story, but then, I’m not going to get into his medical history even if I knew it, which I don’t, but this much I do know, his first name was Ted, and he had severe pain from Shingles.

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My father’s Shingles

My father also had Shingles as a kid.  He would tell me about it, but I never made him recount or relive the story.  Anyway, I could not take the Shingles injection, because I had a compromised immune system.

Why compromised?

It was compromised because of the Multiple Sclerosis, and it was further compromised because I was on Gilenya, which also surpresses the immune system.  Gilenya was my first clinical study.  Accordingly, there was no way I could get the Shingles shot, or so I thought.

Shingles shot in the dark?

Well, Merck decided to irradiate the Shingles shot and conduct an FDA approved clinical study of the new irradiated Shingles shot.  There would be no live virus.  Here goes the guinea pig, again.  I had to take a series of five injections, and monitor my temperature with a thermometer.  I kept a record in a journal.

Thinking of Ted

All throughout the study, I kept thinking that I’m doing this for Ted, and others like him who suffer from this awful disease.  I don’t know if I was receiving the drug or the placebo.  After all, this was a FDA approved study.

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Study completed

I completed the study, but to this day, I don’t know whether I actually received the drug.  I did get a reaction to a couple of the injections which makes me suspect that I did receive the drug, but I really don’t know to this day.

The infusion drug – Tysabri

Shortly after completing the Shingles study, I heard about the J.C. Virus.  Apparently Biogen  was having problems with it, and their infusion Multiple Sclerosis drug, Tysabri.  They had found instances of PML.  This is another horrible neurological illness.  I decided to be part of that study, too.  I had Chicken Pox as a child and I was J.C. Virus positive.  Once again, here goes the guinea pig.

They want blood

This was blood test after blood test to the point where I asked the clinician who was taking the blood, if she could leave a little blood for me.  After a few months  this ended.  I do not know whether the clinical study was completed or whether the drug company lost interest in the study.  I also don’t know the results, if any of the study.

I begin Housecalls

Shortly thereafter, it became very difficult for me to make it to the doctor’s office.     I started with Housecalls and did not see my neurologist again.

Comments

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For lack of a chew toy

Your dog is precious to you. Your dog is your best friend and companion.  Your dog is part of your family.  But what do you do when your dog has decided to chew on your lamp cord rather than his or her favorite chew toy?  This can be a real problem.  It can even lead to a fire hazard.

The dog that is proud of his or her chewing

Of course, part of the problem is that your dog is unlikely to tell you that he or she has eaten through your lamp cord or the cord of any other appliance.  Consider yourself lucky, if you have a dog who is proud of his or her handiwork, and shows you what was done.  More likely, you are going to have to find this yourself.

Little Lassie

My dog is a Shetland Sheep Dog named Chuckie.  My wife brought him home, and he looked like a little Lassie.  How could I not fall in love with little Lassie?  However, little Lassie has chewed on all sorts of things.  He chewed on furniture.  He has had accidents all over the house.  But we still adore him.  He is a member of the family – a family where no one is perfect.  I certainly am not perfect.

Who am I to complain?

I have Multiple Sclerosis.  I’m a paraplegic.  If I can do this, so can you.  Accordingly, I am in no position to be critical of Chuckie.  By the way,  Chuckie got his name from our son, who named him after Chuckie Cheese because the shopping center that he came from had a pet shop (where we purchased Chuckie), and a large Chuckie Cheese.

A partial job

Anyway, Chuckie ate his way though much of the lamp cord, but not though the entire cord.  This led to intermittent lamp operation.

Is it the power strip or cube tap?

I had no idea what was causing this problem.  At first, I thought it might be the power strip, or the cube tap that I was using.

Feel the cord

Eventually, I figured out that the cord was chewed.  I felt along the cord until I noticed an uneven part.  There it was.  The spot where Chuckie had partially eaten through the lamp cord.

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What you will need

To fix this problem, you will need four things, a new plug, a screwdriver, a wire splitter/cutter, and an extension cord.

Cut close to the lamp, but not too close

Cut the wire before the chew line created by the dog.  You want to make sure that the part of the cord chewed by the dog and causing electrical problems is completely removed.  You are cutting the cord close to the lamp, and away from the plug.  This will shorten the lamp cord.  This is why you’ll need the extension cord.  There may not be that much of the original cord left, depending on how much your dog chewed.  Remember to leave yourself enough cord to work on.

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There are two wires together

There are actually two wires on a lamp cord.  This is to allow for the positive and negative alternating current. You need to separate the two wires.  This can be done with the cutter.  If you are strong enough, you may just be able to pull them apart.

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Strip the ends

Then you will need to strip the ends so that they can be connected to the new plug.  Some plugs can work without stripping the wires, but I have had more success with those plugs that require stripping.  Those that don’t require stripping often require exact placement to dig into the wire.  I’m not exact, and my wiring is often less than perfect.

A dependable connection

Do yourself a favor, strip both wires at the ends, wrap the twisted wires around the screws and tighten with a screwdriver.

Get a good screwdriver

The Irwin screwdriver on My Products page is a good choice because it includes both Flat and Phillips bits.

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Do the twist

If the wires are not already twisted, I recommend that you twist the wires before you wrap them around the screws in the new plug.

Polarized plug

You will note that some plugs are polarized.  This generally is not critical for a lamp, which usually has a two prong plug. It is critical for three prong plugs.  Usually, you will notice writing on one wire, but not the other.  If you want to maintain the polarization (recommended), make a note of which side has the wider plug, and which has the narrower plug, and maintain this arrangement for the new plug.

Extension cord

Plug the new plug into the extension cord (the length of the extension cord needed will vary depending on how much your dog chewed).  I have found that a 6 foot cord is usually sufficient.

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What about a new lamp?

Replacing the plug is usually much less costly than buying a new lamp.  Also, if you have two lamps, say on either side of the bed, then you are unlikely to find the exact same lamp, years later.  You will need to buy two lamps, making buying new lamps, much more costly.

Comments

Please feel free to leave any questions and comments that you may have, and enjoy your lamp and dog!

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My love / hate relationship with car batteries

Car batteries and I have a love / hate relationship.  I love what they can do, start your car, and I hate it when they don’t.  Recently, we have had a cold spell in the northeast United States, and my handicap van did not start.  I have a solar charger, and still, it did not start.

The AAA battery

I have a battery from AAA, yet I did not call AAA.  AAA will not give me a battery boost after 5 starts.  So if my van doesn’t need a new battery, I may call someone else.  Otherwise, AAA charges me $45 to start my van.  So, rather than use my 5 calls to AAA, I call Allstate Motor Club.  I also have BP Motor Club.  I have found that both Allstate and BP Motor Club are good for light duty boosts, and AAA is good for both light duty and heavy duty boosts.

Light duty boost

In this case, all I needed was a light duty boost.  Apparently, someone left a light on in the van and even with a solar charger, which I have, the battery will begin to die.  I like to buy batteries from AAA, because they will come to the house to install a new battery.  Also, they will come to the house to change a dying battery.  Remember to ask for battery service which may only be available 9 am to 5 pm on Mondays through Fridays.

AAA batteries are very good

Of course, there is that $45 charge, so I try not to call them too often.  By the way, I have found that the AAA batteries are very good batteries that last years with the regular use of the vehicle.

Notorious Me

I am notorious for not maintaining regular use of the van.  I have Multiple Sclerosis, and I only use the van when I really need it, which means I regularly deal with dying batteries.  The van has to be often started and allowed ro run in the driveway, otherwise it would rarely start when I need it.

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A brake check

Recently, a friend of ours decided that her brakes may be going bad and she took her car to a service center to check the brakes.  She was told that the brakes were fine, but she would need a new battery.  About 2 months ago, she had a new AAA battery installed in her car.  AAA will make good on their warranty if you have the receipt. So the decision came down to does she have the AAA receipt?

Keep the receipt

Apparently, she did not keep the AAA receipt, and she got a new Exide battery.  Exide also makes very good batteries that last many years.  However, this service center did not install the battery correctly, and the battery had to be reinstalled, so that it worked.

The power wheelchair batteries

Recently, the power wheelchair that I use around the house, I use a different power wheelchair for the van, went bad.  This was no surprise because the batteries had lasted 4 1/2 years.  The manufacturer says the batteries will last only one year.  I have found that keeping the wheelchair plugged in the wall year round makes the batteries last longer.

The power wheelchair uses two batteries.

This is a smaller size than usual, because the Golden Tech, Lite rider power wheelchair has a special battery case.  This battery case does come with batteries pre-installed, however at a substantial price.  This does make changing the batteries convenient, but costly.  I have a handyman who will do work around the house and change the power wheelchair batteries for a good price.

Panasonic calling

I have a landline telephone.  It is a Panasonic cordless phone system.  It uses rechargeable AAA batteries.

What is an Odec?

I bought Odec rechargeable batteries for the cordless phones.  The original Panasonic rechargeable batteries had not stopped working, but they were not lasting as long as I like and were many years old.  The Odec batteries did not come charged and needed to be charged and discharged and recharged 3 times before they fully hold a charge.  However, they are a great price for 16 rechargeable batteries.

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Work in progress

I am currently working on that but it seems that I may have a couple of dead batteries.  This is not a big problem since I have many of them, and they are cheap.  Also, they are probably not slow discharge batteries, because they came completely discharged, which is unusual for slow discharge rechargeable batteries.

Comments

Please feel free to add any questions or comments below.

Gilenya and root canals on my teeth

To this day, I am still taking Gilenya.  It has had significant benefits to me, as I say, from the neck up.  Prior to taking Gilenya in 2007, I had one root canal after another.  I have had no root canals on any of my teeth since then.  When I do have an extraction, it is not because of a root canal issue.  It is because I cracked the tooth.  Root canals are a nerve issue, I have had none since 2007.  Prior to taking Gilenya, I have had none to this day.

Carrying a computer

In 2005, I was carrying a computer and I tripped.  I was bleeding from my chin, and I had to go to the hospital to get stitches.  I also got a herniated cervical disc.  This certainly hurt.  Gilenya is also an anti-inflammatory drug.  After taking Gilenya, my neck has felt much better.

Allergies

I have allergies.  I have environmental allergies.  I am allergic to grass, trees, dust, mold, ragweed (I have hay fever, especially Spring hay fever), and sycamore.  After taking Gilenya, my allergies have improved.  I had been taking allergy injections for years.  I am still affected by allergies, but much less so, and I no longer take allergy injections.

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What about dizziness?

As a result of my Multiple Sclerosis, I would have dizziness.  After taking Gilenya, my dizziness is gone.

Flu like symptoms

I no longer have flu like symptoms, but this I attribute to stopping the Betaseron.

My vision improves

About 10 minutes after starting Gilenya, my vision had improved.  It has continued to improve to the point where my optometrist has had to lower my eyeglass prescription.  However, I still wear glasses, but the prescription is significantly lower.  No more Coke bottle glasses.

Gilenya gives me 2 1/4 years of walking to work

I was about to stop walking in 2007, but Gilenya gave me another 2 1/4 years of walking to work, before I was forced to retire by Multiple Sclerosis.  Gilenya still works great from the neck up.

How to improve

Anyway, by the end of 2011, I was looking for a way to try to improve.  I spoke to my neurologist and he suggested a Baclofen Pump.  Baclofen is a muscle relaxer, but when I take it orally I have had very bad side effects.  I would get headaches and dizziness, and I was a mess.  However, with a pump, the medicine is delivered directly into the spine, with, in my case, no side effects.

It sounded good

This sounded like a good idea and in January and February of 2012, I began to set up the surgery that was need for the installation of a Baclofen Pump.  This would entail incisions in the front and back.  In the right front, the pump would be placed, and in the back, a catheter would be run up my spine to deliver the medicine.

The doctor’s new job

My doctor, apparently had plans to take a new job in New York City.  I followed him into the city, and had the surgery performed in the city.

Successful operation

I had the operation on March 5, 2012.  A representative from the pump manufacturer was present at my operation.  The operation was successful.  The next day, I was awoken, given two Percocets, two aides stood me up, and I was told that I could leave.  Boy, was I groggy after the operation and two Percocets.

The $1,000 ambulance ride

Anyway, I was loaded into an ambulance and taken to Glen Cove on Long Island.  Only later would I learn that this ambulance trip would cost me $1,000.  I would only stay at this hospital for two weeks, at which time the staples from the operation were removed by the doctor.

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The problem

Here was my problem.  My neurologist was not admitted to Glen Cove Hospital.  Very few doctors were qualified at the time to regulate the pump.  It is regulated by remote control by the doctor.   The pump cannot be regulated by the patient.   The only doctor I could find to regulate the pump at this facility, hated Gilenya.   Gilenya affected the immune system.  The doctor believed I would get some terrible illness because my immune system was suppressed by Gilenya.  However, the drug company that makes Gilenya tested for this, and found that not to be the case.  I was part of the clinical study that got Gilenya approved by the FDA.  My medical records were sent to the FDA.  Based on my (and others’) medical records the FDA approved Gilenya.  This was not enough for this doctor, and I was taken off Gilenya.

No Multiple Sclerosis medicine

I was given Cellcept, which caused bad side effects, and so I was on no Multiple Sclerosis medicine.  All my pre-Gilenya problems returned.  But I toughed it out.

Medicare will only pay for 100 days

After the two week stay in Glen Cove, I spent about 100 days recovering in a nursing home.  Apparently, Medicare will only pay for 100 days.  After 100 days, I was returned home.

How did it work for me

I wish I could say I had great results from the surgery.  While the surgery was a success, I only had small gains from it.  My Clonis (shaking of my legs) improved (lessened), it did not go away completely.  The Baclofen relaxed my muscles, but did not give me any added strength.  I had less spacity, and could sit up better, but I had little trunk support, and was prone to falling over sideways.  I would have to work on this.

Return to my regular neurologist

Shortly thereafter, I returned to my regular neurologist, who put me back on Gilenya.  This required another 6 hour adjustment period, but it was well worth it to get back on the Multiple Sclerosis medicine.  All the benefits of Gilenya returned.

The Story Continues

I left off after I was diagnosed with Multiple Sclerosis, and I was prescribed Betaseron.  But my journey with Multiple Sclerosis did not end there.

Betaseron injections

Betaseron is one of the ABC drugs.  These drugs are injected into the arms, legs, and stomach.  The injection site is rotated so that no one site repeatedly gets the shot.  I continued to do this from 2003 to the end of 2006.

It’s all over, maybe

At this point, I felt as though it was all over for me.  I could no longer continue.  I would have to quit my job at the New York City Law Department’s Tort Division.  It was not uncommon for someone on Betaseron to suffer from Flu like symptoms.  This is a side effect of Betaseron and many of the ABC drugs.  Multiple Sclerosis and the MS drug had gotten the best of me.

Misery & Me

I did what I usually do when I’m that miserable, I research my way out of it.

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Fingolimod

I found a drug called fingolimod.  It was a pill that you took once a day.  It was for relapsing remitting Multiple Sclerosis.

Conference

I went to my neurologist and I spoke to him about the drug.  This was still the end of 2006.  He told me that he had gone to a conference and they had talked about it.  I was elated.  He knew about this drug.  He gave me information about the drug that he got at the conference.

Prescription, please

But my elation was short lived, because the I asked the key question –  could he write me a prescription for the drug.  He said incredulously, “A prescription, it’s an experiment!”  He could not write a prescription, the drug was not even approved by the Federal Food and Drug Administration (FDA).  I thanked him and left the office despondent, but I had the materials he gave me from the conference that he had attended.

I decided not to go to Japan

I decided to continue my research.  I found a place in Japan which was conducting a clinical study on the drug.  I don’t know how to speak Japanese.  I do not want to move to Japan, and if I did, would I even be accepted into the Japanese study?  I decided to keep looking.  My efforts were shortly thereafter rewarded.  I found a place in Plainview, NY that was part of the Novartis study for fingolimod.  I was elated.  I called my neurologist and told him.  He asked me where and I told him.  He said he also had other patients who might be interested in the clinical study.

I stop Betaseron

I called the office in Plainview and I was told to stop taking Betaseron.  I could not be in the study for fingolimod and be on Betaseron at the same time.  I would have to be off Betaseron for at least 3 months before I could be in the study.

I become a guinea pig

I went to the Plainview office and I was questioned and after looking at my records, I was told I could be part of the study.  The study was in phase three.  In all fairness, I had been following a Blog called Fingolimod & Me.  As far as I know this blog is no longer updated.  However, I owe much to this blog because it gave me great insight into what I was getting myself into.  I was about to become a guinea pig.  I was doing this not only for me, but all of the Multiple Sclerosis world.

Time to wait

It began in a room.  I had to sit there for 6 hours.  The pill I was taking was either a placebo, .5 mg, or 1.25 mg.  It was an FDA approved study and they apparently weren’t even sure about the dosage. I took the pill, and about ten minutes later I started to see better.  There were flyers on the door to the room I was in, and I noticed that I was able to see and read them better.  I mentioned this to one of the doctors who did not seem to give this much concern or credence.  After 6 hours, I would be allowed to leave.  The time came, and I was ready to leave.  I was told there was no way I was going to leave now.  Apparently, my heart rate had slowed significantly and it was time for an EKG.  Thereafter, they continued to monitor my heart.  Eventually, it leveled off and I was allowed to leave.

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Many doctors and tests

Thereafter, I was given a list of doctors to go to.  The doctors were part of the study and I got the impression from the doctors on the list that there was only so much they could tell me.  Novartis, the drug company, would pay for the doctors.  It was a variety of pulmonary doctors, dermatologists, MRI’s, and ophthalmologists who I would visit, as well as testing by the neurologist.

Placebo, maybe

I did not know whether I was receiving the drug or a placebo.  I did not know what dosage I was getting, .5 mg or 1.25 mg.

The approved dosage

Later, after the study was completed, I would learn that I was on the later FDA approved dosage of .5 mg.  No one originally told me, but after my eyesight improved about 10 minutes after I began taking the drug, I had suspected that I was getting the real drug, and not the placebo.  At the time, I did not know what dosage I was taking.

The drug gets approved

I later continued with the extended study for another two years.  On September 10, 2010, the FDA approved the drug.  However it was no longer to be called fingolimod, it would now be known as Gilenya.  In time, I learned that 14 Multiple Sclerosis drugs were in testing that year but only one, Gilenya was approved by the FDA.

I continued to work

I continued to work for another two years hobbling around Manhattan.  I have continued to take Gilenya except for one time, since then, but that’s a story for another time.

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My Multiple Sclerosis Story – The Beginning

My Multiple Sclerosis life story began in 1977, even though I did not know it at the time.  Only years later after consulting with my neurologist did I begin to realize the pieces of my Multiple Sclerosis story.

Weakness holding a cup

I was in law school and I began to notice that I was having difficulty holding a cup. I had difficulty holding a cup of coffee, a cup of water, a cup of soup and so on.  I noticed this with my right hand.  I am right handed and usually pick things up with my right hand.

The nervous twitch is everywhere

I noticed that this was odd, but I was not that concerned about it.  I went to class and I looked around my law school class.  I wanted to see if anyone had a similar problem.  Virtually everyone in the class had a nervous twitch of some kind.  This was not unusual for a law school class.

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The weakness subsided

I did not think much of it and I went about my life.  The weakness in the right hand subsided in a couple of weeks and I just continued with my life normally.  I really did not focus on the issue and after a couple of weeks all was well.

The cloud arrives

My life went merrily along until on Saturday in 1985.  I awoke with a cloud in my right eye.  I could barely see through the cloud.  It did not cover the entire field of vision, but it obstructed about 1/3 of the field of vision.  I continued doing things that day and went to the Bay Shore Shopping Mall on the south shore of Long Island, NY.

I still see the cloud

I still had the cloud in my right eye and it was a sunny day.  I was hoping it would go away, but it did not.  I was thinking maybe I slept on the wrong side of my bed and I must have leaned on something.  Anyway, by the afternoon, I was beginning to think that someone who knew something about eyes should take a look at my right eye.

What to do in a shopping mall?

I was still in the shopping mall.  I looked up.  I saw Cohen’s Fashion Optical.  I went into the eyeglass store and I asked to see the optometrist.  A Dr. Corbin came out to see me.  He took a look at my eye.  Then he took me to his office in the back.  He looked more.  He kept looking, but he could not find anything.  He seemed frustrated. He kept looking, but could not find anything.

Time to see an ophthalmologist

He finally said that he knew an ophthalmologist that might still be available on a Saturday.  He sent me to Dr. Bruce Mazure in Woodmere, NY.  Dr. Mazure apparently had a new device.  It looked like a white mini satellite tv dish.  It had little points of light that came out of the device.

Optic neuritis

Dr. Mazure concluded after the testing and often looking at my eye that I had optic neuritis.  I had what?  Yes, he said he believed that I had optic neuritis.  Really, it is apparently an inflammation of the optic nerve.  I remember walking out of the office with Dr. Mazure, he apparently had a place to go and I walked outside with him to his car.  I was his last patient on that Saturday.  We continued to talk about optic neuritis.  Then we left.

Studying up about optic neuritis

I went home and told my parents, who also knew nothing about optic neuritis.  I began studying up on everything I could get about optic neuritis.  However, this was 1985 and there was not much known about optic neuritis.

Detached retina?

I went to many ophthalmologists after that and I was told that I had a detached retina. Who was right? Meanwhile, the problem was slowly improving, and became increasingly difficult to detect.

My first neurologist

I even went to a neurologist associated with North Shore University Hospital, who raised the specter of Multiple Sclerosis.  He said it could be many things.  What was this and how could we detect this.  Well, we couldn’t.  It was 1985 and there was no effective test.  We could do an epidural, but even that would not be conclusive.  Besides it was 1985 and epidurals had mortality rates at that time.  He said to just continue living your life.  There would be no confirmation of Multiple Sclerosis at that time.

Studying up on Multiple Sclerosis

I went home.  I studied up on everything I could get on Multiple Sclerosis.  I was a lawyer.  This is what I do when I have an issue.  However, again I was not coming up with much.  It is an inflammation of the nerves.  It was 1985, and even if they could confirm it, which they couldn’t, there was no cure and no effective treatment.

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Optic neuritis disappears

Life went on and the optic neuritis almost completely vanished and my life continued happily along.

The limp begins

Until, 2003 came.  It was Presidents’ Day 2003 and I began to limp with my right leg.  I went to Dr. Schlesinger who was a neurologist.  He is no longer practicing.  He sent me for an MRI of the brain with and without contrast.

MRI shows Multiple Sclerosis brain lesions

When I returned to his office, he gave me the news.  I had Multiple Sclerosis.  He showed me the MRI results with multiple MS lesions.  I told him about my story of weakness in the right hand.  The difficulty I had holding a cup in law school.  I told him about the optic neuritis or detached retina.  He said I probably had Multiple Sclerosis for more than 20 years.

Finally there is a treatment

I left his office with a prescription for Betaseron.  It is given by injection.  I would have to inject it myself. This would be the beginning of years of treatment for recurring remitting Multiple Sclerosis.

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