My Multiple Sclerosis Story, part four : Shingles and Tysabri

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.

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.

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

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

My Broken Van Ramp

What I have.

I own an old used Chrysler Town & Country Mobility Van.  It is a 2006 van.  The exterior color is midnight blue (it looks like a navy blue).  Most of the mobility vans in the lot looked like handicap vehicles.  They looked like modified ambulances.

I bought it because it didn’t look like a handicap van

This van looked like a regular Chrysler Town & Country, and you would not know that it was a handicap vehicle unless you stopped to look at the license plate or you saw the ramp come out of the side of the vehicle.

Van almost cut in half

They use front wheel drive vans to make a handicap van.  In order to have the ramp come out automatically (you use a remote control key), they need to almost cut the van in half.  This is called a conversion.  They are converting a standard van to a handicap vehicle.

Careful for the drivetrain

Because they almost cut the vehicle in half, if the van had rear wheel drive, they would have to cut through the drive train.  Generally, this is not a good idea.  It is much easier, and less expensive, to use a front wheel drive van.  For the same reason, they don’t use four wheel drive vehicles, or all wheel drive vehicles.

Press the remote key twice

When you press the remote key twice, the side door opens and the ramp should automatically come out.  Then when my power wheelchair goes up the ramp and into the van, you can press the remote key twice and the ramp automatically comes back into the van, and the door closes.

Ramp works partially

Well, that’s the way it is supposed to work.  This week, I had a dental appointment.  I pressed the remote key button twice and the ramp only partially came out.  Then I did it again and the ramp receded partially into the van.  The door would barely close.

It was stuck.

This was big trouble.  After that the ramp would not come out or go fully into the van.  It was stuck.  This is a nightmare.  The only thing worse is if this happens when I’m at the dentist office.

Call to the dealer

I called the van dealership where I bought the van and they agreed to pick up the van the next day.    The next day they picked up the van and later that day I received a call from the dealership that they would need more time to look at the van.

Out of cycle

The next day I received a call from the dealership that the ramp worked all but one time at the shop.  Apparently,  it had gone out of cycle.  I don’t know exactly what that means, but I asked if there was anything that a handicapped person could do to get it back in cycle?

A manual release

At that point, I was told that there was a manual release that was yellow in color.  It take time for me to get to the van, when they came so I had my wife talk to them and show her the manual release.  When the ramp got stuck, we were pulling it every which way to no avail.  I had a picture taken of the yellow manual release control so I could see it.

Where is it?

It is by the door on the floor of the van.  This is in a position that is almost impossible for me to reach.  However, another, more capable person, could easily reach it.

They should tell you about this

This way the ramp could be manually moved in and out.  They should really tell you about this when you buy the van.  I’ve had a lot of headaches with the ramp in the past.  Fortunately, they did not charge me this time.

Time to reschedule

The dental appointment had to be cancelled.  I will reschedule the appointment shortly.

Comments

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

What to do when your dog chews your lamp cord

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.

>>>>Buy Leviton Electrical Plug<<<<

This page contains Amazon affiliate links.  I receive a small commission at no additional charge to you.

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.

>>>>Buy Slip On Plug<<<<

This page contains Amazon affiliate links.  I receive a small commission at no additional charge to you.

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.

>>>>Buy Dowell Wire Cutter/Stripper<<<<

This page contains Amazon affiliate links.  I receive a small commission at no additional charge to you.

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.

>>>>Buy Irwin Multi-Bit Screwdriver<<<<

This page contains Amazon affiliate links.  I receive a small commission at no additional charge to you.

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.

>>>>Buy Cable Matters 6 foot extension cord 2 pack<<<

This page contains Amazon affiliate links.  I receive a small commission at no additional charge to you.

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!




Car Batteries and More

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.

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.

>>>>Buy 16 Odec Rechargeable Batteries<<<<

This is an Amazon affiliate link.  I receive a small commission at no additional charge to you.

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.