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TxRR

Distinguished member
Joined
Oct 9, 2007
Messages
164
Reason
DX UMND/PLS
Diagnosis
01/2007
Country
US
State
tx
City
Houston
My name is Rob and I am 35 yrs old, married and father of three teenage daughters. I was diagnosed with PLS in early 2007 by Dr. Appel. My story begins in 2003. I had back surgery to correct a herniated disc. I had no signs or symptoms of PLS at this point (atleast that I was aware of). My back surgery was a very traumatic experience. I was in alot of pain and suffering. After my back surgery, my friends started making fun of the way I walked and moved. They called me the "Tin Man" and "Robot". I figured this was just a result of an unsuccessful back surgery.

One day, my wife injured her knee and went to see the same orthopedic surgeon that did my back surgery. She ended up having knee surgery and I went with her to a post surgery follow up visit. During the visit the doctor asked me how I was doing. I told him how my friends were making fun of me and that I was still in alot of pain. The doctor asked me to walk down the hallway which I did. He too noticed my gait was off. He checked my reflexes and ran a pen down the bottom of my foot. He told me my reflexes were very brisk and my foot turned upward instead of downward which usually indicates nerve disease. I didn't have any of these symptoms before and recommended that I see a neurologist right away. I was really scared at this point because the doctor had a look on his face like he just saw a ghost.

The first neurologist I saw said I was fine and that some people just have brisk reflexes. I called my ortho and told him this. He about fell out of his chair and told me to go to another neurologist right away. The second neuro acknowledged there was something wrong and by that afternoon I was having three hours worth of MRI's being done. A couple of days later I get a call from the doctor’s office saying they needed to do an MRA. They would not give me any details on what was going on. I ended up leaving this doctor because he would not give me the results of any of the tests he was performing. He kept telling me to wait until the end.

Finally, I went to the third neuro who ended up being the best one. He diagnosed me with PLS and referred me to Dr. Appel for a second opinion. Dr. Appel agreed with the original PLS diagnosis.

My main problem is with my legs. I have all the classic symptoms and it feels like they weigh 300 lbs.

Here's the kicker...I am a police officer and have been for the past 15 years. Luckily, I patrol in a very upscale area with not alot of crime. I know the day is coming if not already here when I am going to have to quit my job. I don't have a degree or any other skills which makes finding another equally paying job very difficult.

I still hit the gym four times a week and can bench press 285 lbs. and preacher curl 120 lbs. I spend an hour on legs doing the treadmill, elliptical, bicycle leg lifts (front and back) and calf raises. I spend two hours on upper body going hard core. You probably couldn't tell by looking at me that I'm ill. I seem to keep up pretty well with young healthy guys.

I don't have any regrets in my life other than the timing of this disease. I have two honor roll daughters headed for college. My wife and I purchased a very expensive two story home about 4 years ago. It will not sell for what's its worth in this dying housing market. We have three car payments, credit cards etc, etc... My wife and I are facing financial ruins if I can't work anymore.

I just wish if it was God's will for me to have this disease to atleast give it to me before we went and made such expensive purchases.

Also, from what I have read, the chances of getting this disease are slim to none. Those are about the same odds of winning the lottery therefore, we all ought to be buying lottery tickets.

Anyway, that's my story and I'm glad there’s a forum like this where I can vent my frustrations with people that understand.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
:-D hi rob,welcome
yes we are a rare breed,even more so in uk.you sound posative and thats good.
ive had pls for 8yrs. itoo used to go to gym and lift weights (wasnt bad for a girl lol
) i loved running also,sadly those days are gone.i use a walker but trying to put off a chair as long as i can.the financial strain of having a disabling illness is hard,i had to give up work and go on disability, now i do what i can when i can and that gives me a better quality of life.its good you are still able to go to gym,but be carefull on how much you do so as not to cause damage(if you have a good gym instructor there tell him about pls and ask for guidence, as i have permanantly dislocated elbow due to a childhood accident and i had to tailor my weight lifting around it)
take care and best wishes
 

TxRR

Distinguished member
Joined
Oct 9, 2007
Messages
164
Reason
DX UMND/PLS
Diagnosis
01/2007
Country
US
State
tx
City
Houston
Hi Olly nice to meet you.

I have always been athletic and spent 6 years in the U.S. Marines. I was in the first Gulf war assigned to an infantry unit. I am going to continue living my life like normal. I'm going to fight off having to use a walker, wheel chair or any other assistive device for as long as I can.

I love fast cars such as the Ford Shelby Gt500, going to the gym and having the occassional pint at the pub. My wife gets mad at me when I drink too much. She says i'm going to trip and fall. I tell her I trip and fall anyway, atleast this way I won't feel anything. Or atleast until the next morning. I tell her to just point me in the right direction and get the hell out of the way.

I'm currently taking Baclofen and still experimenting with the dosages. I take 10mg. either 1-3 times a day. Some days are good and some are bad.

One thing I don't understand...if this is a degenerative disease shouldn't one be in a constant physical decline. Another words, some days I can barely get out of bed and walk two feet and other days i can jog around the house. This has kinda been the pattern with me.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hey Rob welcome I have 7+years in im 62 . I dont want to sound like your Sergent But you know when you go on a call you always prepare for the worst case scenario . Now is the time to get your ducks in a row .
Discover your options if something should happen . We are a Very Very Rare set of Birds . The key here is educate yourself as Most Docs. dont know Jack about what we have . Beleive me im a Been there done that Guy . This disease is a Sporadic .meaning comes on all of a sudden . I woke up one Saturday with slurred speech . Good thing you dont have that one , kind of hard to explain a Cop with Slurred speech . If you were to pull me over you would sware im drunk ,i cant tandem walk ,slurred speech , except i can follow the pen with my eyes . Yes i was devastated as all were . We all progress differently .Im of the belief it is a Virus that has gotten into the Brain all my Diagnostics is fine MRIs EMGs etc etc. You might want to have aspinal tap to check for MS . Dont overdue the Baclofen i ended up in Emergency one day ,it stopped my breathing .
I have quite a few Posts so you might want to read them for more info . We ended up moving to Florida because the heat and hottter weather is better for me . Not one Doctor will touch this subject wether Virus or not . and employers see people like us as a liability so beware of what you tell them if they get wind you are a PLS candidate you might end up losing your job . And yes i found out first hand . Geo
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Forgot to mention ive been i alot of Groups and it seems to me ,we all were in jobs where we encountered the public alot . If anyone is going to be more vulnerable to Viruses and Bacteria it's us . I was a Plumber and had alot of nasty jobs . Geo
 

TxRR

Distinguished member
Joined
Oct 9, 2007
Messages
164
Reason
DX UMND/PLS
Diagnosis
01/2007
Country
US
State
tx
City
Houston
My wife and I have started preparing for the worst. I told her we were on the Titanic and the iceberg was straight ahead. I just didn't know how far ahead. The day is coming when I will have to tell my employer. I'm just trying to build my retirement up as much as possible in the meantime. We are also trying to pay off as much debit as possible.

Fortunatly, I have two wonderful parents and in-laws that would cut off thier right hands to help us.

I had a spinal tap done and it was negative. I like your theroy about the virus. My ortho had asked me if I ever had Polio or any other serious illness. I guess he thought it could be viral as well. I told him no other than the seasonal flu.

I've heard some horror stories about Baclfoen but it dosen't seem to bother me. The most I take in one day is three doses. I figure if it dosen't work by then the hell with it.

I notice when I talk alot that my throat gets stratchy and hoars. I use to choke on my food, water or saliva but that went away.

God had a sense of humor when he created this disease.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
We did a living will a do not recessitate and all that jargon . because once they get you in there thier attorneys will keep you on a machine until theres no more money and your spouse will be destitute.
Also look into SS Disability . I did a thing called Vital Stim Therapy where they put a Muscle Stimulator on your neck muscles which helped me then i bought my own TENS / EMS machine also helps for stiffness in the lower back . i get the saliva thing in mornings mostly . Im on nothing now was on Zanaflex but made me like rubber . I hope you dont have to get in a confrontation with a fugitive being stiff and all ,or running them down . I watch Cops all the time,(like to see the good guys win ) my best friend was a Ill State trooper ,retired at 45 ,hope you can get an early retirement from Texas or a Disability retirement . At least we get to live, which is more than ALSers, makes you appreciate life more i geuss . Geo
 

Whitsend

Distinguished member
Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
I'm with Geo. I wouldn't be surprised if this is viral. My symptoms started shortly after I had shingles.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Shingles is the Vericela Zoster Virus or VZV it remains dormant in your spine after getting the Chicken Pox
then comes out at an older age . A VZV virus is 20,000 times smaller than the head of a pin ,so you can imagine how big . So yes a Virus along with Caffeine, Alcohol, and Stress can go through the Blood Brain Barrier . Why they go for the Motor Cortex is beyond me . I found That wwwhowstuffworks.com is a good web site to learn about things you dont understand . Geo
 

TxRR

Distinguished member
Joined
Oct 9, 2007
Messages
164
Reason
DX UMND/PLS
Diagnosis
01/2007
Country
US
State
tx
City
Houston
Would I qualify for SS disability if I don't pay SS taxes? Here in Texas most law enforcement agencies have a different retirement system (Texas Municipal Retirement System) and we don't pay SS taxes. They told us at an insurance meeting last year that long term disability pays 60% of our regular pay. They didn't say who pays the long term disability (state vs private insurance).
 

Whitsend

Distinguished member
Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
SS Taxes

I just recently applied for SSD. In the appl. they asked a lot of questions about pay that was not taxed for SS. I'm not in TX, but I assume that what you earned and didn't pay SS taxes on will not be used in the calculation for benefits. My guess is, you'll probably be eligilble, but for a very much reduced benefit. I'm sure someone else in this group will know for sure.
 

pmbenb83

Distinguished member
Joined
Aug 6, 2007
Messages
399
Diagnosis
03/2008
Country
US
State
VA
City
Stafford
Hi Rob,
First I would like to say welcome to the forum and that I am very sorry to hear that this awful disease has touched you and your family too. Your story sounds very similar to my husband's story.

Our families have a lot in common... my husband is also a cop and has an undiagnosed MND (they aren't sure which one yet) and he retires in 4 years (16 on the job); we have 3 kids in college right now; he also was a big gym rat and was in the 300-lb club, and now we are trying to figure out what we are going to do too. Ironically on Friday, he just received his social security statement telling him what he could get if he had to go out on disability. We will definitely be moving on that pay. Better than nothing though, and we will do whatever it takes to make the best of it, no matter where we live. He is the 4th or 5th guy on the job to get this within the last 10 years, and we know that his department will find a place for him inside. Right now, his watch commander (friend) brought him into the control center to protect him. Unfortunately, he patrolled in some bad areas of DC on the midnight shift, so now he is daywork and inside... I like that much better. :) Maybe that could be an option for you too. If it is just your legs involved right now, there is a lot you could do inside and collect a good paycheck still.

From what we are gathering with my husband, this is a slow progressing thing for him. He too started having symptoms after surgery several years back from an injury on the job, but at that time we just thought he was over working his shoulder or dehydrated, etc. THen last spring he started having twitching and spasms all over with little exertion. The neuro put him on Tegretol for it, and then was hospitalized from an unknown cause, which was either a medication reaction or a tick bite. More likely the med reaction since everything else came back normal. His right arm/hand is affected and now his left is starting to lose muscle along with his left flank on his back. He too can use his arm some days and then others, he can't even use it to feed himself. It seems like there is no rhyme or reason to this.

How is your wife doing? If she ever wants to talk to someone who is going through the same thing, she is welcome to PM me.

Take care and keep your head up!
Pam in Va
 

TxRR

Distinguished member
Joined
Oct 9, 2007
Messages
164
Reason
DX UMND/PLS
Diagnosis
01/2007
Country
US
State
tx
City
Houston
Whitsend,

From what I have gathered, I would be elgible for 60% of my current salary through our insurance provider or the state (not really clear on which one). I don't really want to ask alot of questions at work right now because it may raise suspicion. I also heard that if you collect long term disability from another source or you find another job the benefits are reduced. The logic behind this is because they don't want people milking the system. The problem for us is there's no cure or treatment for what we have so therefore, we are not milking the system. If I had a back injury and just didn't want to go back to work then that would be on thing. I wish there was an exception for people with uncurable and degenerative diseases. We should recieve
90%-100% of our current pay.

Pam,

It's very nice to meet you and thank you for the kind words. It's looks like we are definatly alot alike. Unfortunatly, for me I left a large department about 5 years ago to come work for a higher paying small department. Big mistake because theres no room to move around. Theres also no one I can really trust to tell my problem. I work the night shift which is fairly quiet. Most of our calls are self initiated. Believe it or not, I rank as one of the highest in my department for arrests, calls for service and offense reports. If asked, the other officer's probably wouldn't believe someone with PLS worked harder than them.

My wife is very supportive. She says we'll do what we have to do when the time comes. She works alot of overtime and goes to college and still offered to get a second job. I said no way. I'll let her know she can PM you.

Tell your husband I said hello and not to feel like The Lone Ranger. There's a fellow officer and friend in Texas going through the same thing.

Take care,

Rob
 

pmbenb83

Distinguished member
Joined
Aug 6, 2007
Messages
399
Diagnosis
03/2008
Country
US
State
VA
City
Stafford
Hi Rob,
I will pass your message on to my husband. You guys should chat some time. He hasn't gotten on the forum yet, but I think he'll check it out one of these days. I'm sure you too can exchange a lot of good stories, because he also is one of the more active officers in his department.

Take care.
Pam B in Va
 
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