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Mike in Maine

Distinguished member
Joined
Oct 18, 2013
Messages
244
Reason
PALS
Diagnosis
10/2013
Country
US
State
PA, No longer live in ME
City
Pocono's
Went for monthly visit to the Doctor yesterday, he wants me to quit working. Not because I’m physically unable to perform at work or there is a safety issue, it is because it interferes with my medicine schedule. Granted he has a point, it I take the amount of Baclofen and Tizenidine on the schedule he wants I’m pretty much comatose, and need a nice long nap about mid-day (nothing wrong with a nice nap). The spasticity has gotten real bad, like so bad that by the end of the day my legs hurt so bad all I want to do is go to bed. I feel like my whole body is a large knot. Right now I’m taking all the Baclofen he wants to me take 30 mg X 3 a day except I take 20mg followed a couple hours later with 10mg. Can’t do the Tizenidine except at night, just kicks my tail end. Not ready to stop working, seems like one of the few things I still control, as much as I complain I still enjoy it. So now we are talking about the pump so I can stay working, to finally get to the 2 questions of this ramble. For those of you no longer working, how did you deal with it? I’m in great fear of that day! Those who have had any experience with the pump, how did it go? Ok 3 questions, does any of this make sense?

Thanks
Mike
 
As far as the job thing goes... I miss my job dearly. But... it becomes one of those "adapt and overcome" things. Don't know how old you are but there does come a time later life where your health is far more important than "being in the game". After a while... it ain't so bad. Fridays become just another day. Weekends become all week long. Sometimes (often) you can't remember what day it is... what difference does it make? :)
 
Mike, instead of quitting out right, I'd take a doctors excuse to miss work and go on short term, then long term disability if you have it. Eventually they will run out of course but if you've paid in to it why not draw it instead of just throwing it away. I'm sure you can use the money as much as the insurance company can.
When I first went out I had a hard time adjusting as I had been very active all my life but as time went on I found other things to occupy myself with. Reading and learning being just two. I was forced to. Retire for safety reasons as my legs are going, can barely stand now, and my job required climbing ladders and up and down machinery to repair it.
 
I don't know your job or condition. Bacofen made my legs feel rubbery and actually made walking worse. I would think that using a wheelchair may help your legs not be as stiff. It works for me. I have avoided the pump since I don't think there is a lot of benefit for me. I finally relented on my last neuro visit and I agreed to get tested. I am going next week. After 6 yrs with PLS I finally decided to on medical leave and long term disability. My speech was bad and I could no longer drive safely. I needed a scooter or wheelchair. I really enjoyed work but it was not worth the effort. It was not as hard to adjust as I expected.
 
Mike - I had the Baclofen pump implant done 6 months ago. I was taking oral Baclofen that made me so tired that I would come home from work and eat, shower and get in bed by 7:00 p.m. I would sleep away most of the weekends. The pump has made me a lot less tired and has helped the spasticity in my legs. It took about 3 months to get the pump meds to the right dosage for me and had to increase it by very small percentages due to my sensitivity to the drug. Since January all is good. I have no regrets in going through with the pump. Also, I just stopped working in December due to falls and increasing spasticity. I started using a walker as a cane was not helping with my balance issue. I believe the PLS progressed at the same time my body was getting used to the pump so it was a tough time there for awhile. Now that I have been off work for 3 months, I can move at a pace my body can keep up with. It is so great. I miss my job a lot. I worked there for 23 years so it wasn't an easy decision to go on disability leave. But safety was a big determining factor and I know my health is most important at this point in my life. Good luck to you Mike!
 
Mike and Loulou, as time passes (a year or more) you begin to realize how enjoyable it is not having to be nice to people you don’t like, (would like to fire) :). sitting in a meeting going over the same operational problems that was covered in the last meeting and the meeting before that but still unresolved. But, the toughest… trying not to yawn :). Then, another department manager (who is salaried higher than you) walks into your office wanting information/data he was given you know of… at least twice :-(. You can work late, maybe an hour, maybe two, often, but come a morning, walk in 30 or 45 minutes late, one time, and people stop and look at their watches. Lastly, the guy or gal who wears a half a quart of cologne and closes your office door to tell you about their weekend :-(. Oh yea! One more… the office computer program from hell. I think it was called AS400. It was short one (S). Staying at home working on your health ain’t so bad. :)
 
Mike and Loulou, as time passes (a year or more) you begin to realize how enjoyable it is not having to be nice to people you don’t like, (would like to fire) :). sitting in a meeting going over the same operational problems that was covered in the last meeting and the meeting before that but still unresolved. But, the toughest… trying not to yawn :). Then, another department manager (who is salaried higher than you) walks into your office wanting information/data he was given you know of… at least twice :-(. You can work late, maybe an hour, maybe two, often, but come a morning, walk in 30 or 45 minutes late, one time, and people stop and look at their watches. Lastly, the guy or gal who wears a half a quart of cologne and closes your office door to tell you about their weekend :-(. Oh yea! One more… the office computer program from hell. I think it was called AS400. It was short one (S). Staying at home working on your health ain’t so bad. :)
Hi Mike, I had the pump implanted last October after postponing for 2 years. I was in the same situation as you with taking medications only at night because I would fall asleep at work if I took it during the day. In my case, the decision to go with the pump was a life changer. I am less fatigued, more mobile, and feel the best I have for a very long time. I have had 4 med adjustments since the initial implant and I will probably have a least one more adjustment next month. I would recommend that you take a serious look into the pump. Just my 2 cents :) Good luck. Keep us posted.
 
Thank you all for the feedback, I think I will go with the pump. My Doc is trying to find one up here in Maine he likes to do the evaluation. Will see how it goes, trying to avoid Boston. Those of you who have the pump have you had any relief in the shoulders and arms or is it mostly legs. The spasticity in my legs and tail end is very bad, but my shoulders and arms maybe worse.

Thank You
Mike
 
Mike, my area of concern is basically in my legs, hips, and lower back. The pump has done wonders thus far even though I had it implanted only about 6 months ago. I am able to get up from seated positions much easier and my gait is much better. The side effects of taking 7 muscle relaxers at night to just the pump is night and day. I hope everything goes just as well for you. You will be in my prayers. Keep us posted.
 
Hi Mike,

I agree with Dalvin above....if you have Short-Term Disability (STD) benefits, be sure that you use them....you paid into them (or your employer did - or both), so use them for the meantime (while you wait for the SSDI appeal process to work itself out).

I, too, have contemplated quitting work.....the only issue for me is that - even though STD (and Longer-Term Disability) will pay you while you are on short- or even longer-term leave, you'll either have to pay COBRA (expensive) to keep health insurance, OR if total family income is low enough at that time, you could apply for Medicaid meantime.

I hope that helps. I am also struggling with the question of when I should "pull the plug" on working. Meds make me TERRIBLY sleepy -- although I CAN lie down (excepting scheduled conference calls, which tend to multiply like rabbits) when I wish to do so.

Mike
 
By the way, Mike, my pain management doc recently prescribed me Valium 10 mg. at bedtime....for the first time in MONTHS, I slept throughout the entire night. Keep Valium (diazepam) in mind, too!
 
I've had my pump for 6 months. It has not helped the spasticity in my arms or hands, but has really helped my legs. I have been wearing braces on my hands at night for over a year and a half. My fists clench very tightly at night time. My doctors have not really heard that there is a lot of this with PLS. Even before the pump, I was taking 20 mgs of oral baclofen and 10 mgs of diazepam at night with no relief on the clenching. So I wear the braces so I'm comfortable at night. I am so, so happy to not be working anymore. Didn't realize how tired I was then.
LouLou
 
All,
Thank you for the feedback, interesting LouLou I get the clench fist thing also, my arms will tighen at the same time pinning them to my chest (mostly in my sleep). When I told my Doctor about it, he looked at me like I have issues. It is getting to be the normal look I get from him.

Mike
 
>he wants me to quit working. Not because I’m physically unable to perform at work or there is a safety issue, it is because it interferes with my medicine schedule.

I usually passively agree with others on most topics, but the issue of working or not working is an important one to me.

I will keep work they will let me. For money. For purpose in life. To have something useful to do.

Max
 
>I will keep work they will let me. For money. For purpose in life. To have something useful to do.

If they will let me…
 
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