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NeverGiveUp

Need your opinion...on Retirement disability

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NeverGiveUp    5

Alright,

Please help me decide whether to talk to Dr. about retirement disability.

I am 43. 6'2 350 lbs.. Very Active, Played college football.  not your typical 300 pounder, I move good and love sports.  PE teacher for 10 years, now Principal.

Diagnosed in May with Early onset PD.  (several symptoms and abnormal dat scan) taking 8 mg Ropinrole ER..helps but symptoms seem to be coming back.

Diagnosed a year and half ago with Rare Kidney Disease (Primary Aldosteronism)-taking eperolone.

High Blood Pressure- On Coreg, enapril, 2 81mg ecotrin

Thyroid problems- under active- taking levadale..spelling may not be correct

Sleep Apnea-wear cpap every night.

Diabetes- controlled no medicene

I have been in the education field for 20 years, Teacher for 10 and an administrator for the last 10.  Currently, I am an Assistant Principal over the discipline of 750 teenagers.  I love being around the kids and coworkers but we are a week into the school year and seems like my symptoms worsen with stress.  I cant find my words when talking in an assembly and hand tremor in situations like talking to parents and on intercom.  Biggest factor is fatigue, very tired..have to pull over and power nap for 15 min. on the 50 min.commute every morning.  By mid day, I feel out of it and not myself, very tired.  Co-workers ask me if I am ok.   During the summer, I was able to get on exercise program, eat right, and if I was tired, I took a nap.  Blood pressure is also been running real high...average 175/95-100.  Financially, I am as good if I stay home as if I worked, because I have 20 years experience and have disability insurance which I have never used in 20 years.  I guess I have guilt that if I can walk for exercise, camp, fish, hunt and do recreational things to keep moving to take care of myself, i should be working. If I stay home, i would look at it as a new start in my life, not giving up.  

 Should I work on? or concentrate on my Family and Health....

thanks for all your help,

Stu

 

 

 

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DaveN    430

Stu,

I'm quite a few years old than you and I hear you on what you're saying. To be honest, it sounds like your meds aren't optimized. When I was first diagnosed I started off with Mirapex and it really made me tired. I was experiencing a lot of the same issues that you are. It seems like a common theme for some people who take agonists for their PD. I ended up changing doctors and he started me on a low dose of Sinemet (Carbidopa/Levadopa). I now take Rytary (extended release formulary of C/L). My symptoms are controlled extremely well and you would need to be an MDS to tell if I had PD, may be exaggerating or over confident but you get my point. You should talk to your doctor and tell him/her what's going on. If you're ready to retire, then go for it. I'm a programmer and also have other health issues. I could easily collect disability if I wanted to. I still love what I do and the money isn't bad either. 43 is pretty young to retire. I'd personally be bored out of my skull.

Dave

 

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Gardener    194

Hi Stu,

Dave's advice is spot-on.  It took over three years to get my medication optimized and it makes all the difference.  Is it possible to request a less stressful position within the educational system?  We don't know how much your other health issues are causing you problems at work so it might be that optimizing PD meds will not be enough.  Good luck!  Gardener

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NeverGiveUp    5
11 hours ago, DaveN said:

Stu,

I'm quite a few years old than you and I hear you on what you're saying. To be honest, it sounds like your meds aren't optimized. When I was first diagnosed I started off with Mirapex and it really made me tired. I was experiencing a lot of the same issues that you are. It seems like a common theme for some people who take agonists for their PD. I ended up changing doctors and he started me on a low dose of Sinemet (Carbidopa/Levadopa). I now take Rytary (extended release formulary of C/L). My symptoms are controlled extremely well and you would need to be an MDS to tell if I had PD, may be exaggerating or over confident but you get my point. You should talk to your doctor and tell him/her what's going on. If you're ready to retire, then go for it. I'm a programmer and also have other health issues. I could easily collect disability if I wanted to. I still love what I do and the money isn't bad either. 43 is pretty young to retire. I'd personally be bored out of my skull.

Dave

 

thank you for the reply, I really don't want to retire but want to work at a less stressful occupation.  I think I would be able to get another job as long if it is not in education.  Something I will have to check on.   I go back to Dr. on Thursday and I will discuss these meds with him.  Thanks again

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PatriotM    806

Stu,

It seems to me that many of your problems may be the result of your weight.  Diabetes, sleep apnea, high blood pressure all could be the result of the weight.  In addition to working on getting your meds correctly adjusted, I would suggest getting on an aggressive weight loss program.  Additional medical problems make PD much worse.  If losing weight would eliminate some of your medical problems, that might pay significant dividends with your PD.  I would suggest talking to your doctor about your weight issue and how it might affect your PD.

 

 

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MusicMan    771

Stu,

personally, the best thing I did for myself and my PD was take myself out of the stressful environment of full time work. My PD progression seems to be fairly slow, mainly 'cos I have no real worries. If you can "retire" and still pay your bills and have fun, then do it! (But yeah....lose some weight. At 6'2" you should be about 200lbs. I'm 6' even, 158 lbs)

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afroney    125
4 hours ago, PatriotM said:

Stu,

It seems to me that many of your problems may be the result of your weight.  Diabetes, sleep apnea, high blood pressure all could be the result of the weight.  In addition to working on getting your meds correctly adjusted, I would suggest getting on an aggressive weight loss program.  Additional medical problems make PD much worse.  If losing weight would eliminate some of your medical problems, that might pay significant dividends with your PD.  I would suggest talking to your doctor about your weight issue and how it might affect your PD.

 

 

Agreed.

Used to weigh 350. Im a really big guy to begin with, but its still 120 too much. Having that and PD just really complicates  things.

I lost a bunch of weight, due to illness, but I gotta admit moving is easier with 80 less pounds. Now I'm told I need to carry an extra 20 to 30 pounds, due to my declining health.

Ive found swimming and biking to be excellent exercises that PD doesn't seem to affect. Especially, swimming.  Still really good at it - recently swam to the bottom of a 20 ft pond.

As for disability, I was able to get another 5 years of working in once my meds were stabilized. Would still be working, but have been fighting multiple GI infections and Sepsis for the last two years.

Stu,  you might be able tohold out a little longer.  Find the right level and type of meds. 

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stump    463

Not to pile on, but I agree with the other posters that 350lbs is likely hurting your overall health, no matter how athletic you seem to be.  Get down to the low 200's and you probably won't have the issues with diabetes, and high blood pressure.  Might even help the thyroid issues.  Fatigue will most likely also be improved as it takes a lot less energy to sustain a 200-220lb body than a 350lb one.  

 

Also, as others mentioned, getting meds stabilized should help you a lot.  Switching from regular Sinemet to Rytary really helped smooth out the levels of meds in my system and that did a ton to help with issues like daytime sleepiness.  You may need to change dose, frequency, or even type of medication.  It can sometimes take a couple/three months to get everything to settle out for some people, so if things don't improve immediately with a change don't give up right away.  

 

As far as disability retirement goes, while I can definitely understand wanting to punch out, think about it long and hard.  A lot of people, men especially, find a lot of the meaning in their lives from the work they do.  Quitting, even if you have enough money coming in from disability insurance, is not without consequences.  If that is the right move for you, then certainly go for it.  But realize that not everyone is psychologically able to retire in their early/mid-40's.

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NeverGiveUp    5
On 8/7/2017 at 0:25 PM, PatriotM said:

Stu,

It seems to me that many of your problems may be the result of your weight.  Diabetes, sleep apnea, high blood pressure all could be the result of the weight.  In addition to working on getting your meds correctly adjusted, I would suggest getting on an aggressive weight loss program.  Additional medical problems make PD much worse.  If losing weight would eliminate some of your medical problems, that might pay significant dividends with your PD.  I would suggest talking to your doctor about your weight issue and how it might affect your PD.

 

 

I appreciate the reply.  Yes,  I could stand to lose a few pounds.  But I have the Diabetes under control, sleep with my cpap every night.  I graduated high school at a lean 290 lbs.  I am an old washed up athlete...lol.   Your right, weight loss will help everything.

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NeverGiveUp    5
On 8/8/2017 at 1:42 AM, stump said:

Not to pile on, but I agree with the other posters that 350lbs is likely hurting your overall health, no matter how athletic you seem to be.  Get down to the low 200's and you probably won't have the issues with diabetes, and high blood pressure.  Might even help the thyroid issues.  Fatigue will most likely also be improved as it takes a lot less energy to sustain a 200-220lb body than a 350lb one.  

 

Also, as others mentioned, getting meds stabilized should help you a lot.  Switching from regular Sinemet to Rytary really helped smooth out the levels of meds in my system and that did a ton to help with issues like daytime sleepiness.  You may need to change dose, frequency, or even type of medication.  It can sometimes take a couple/three months to get everything to settle out for some people, so if things don't improve immediately with a change don't give up right away.  

 

As far as disability retirement goes, while I can definitely understand wanting to punch out, think about it long and hard.  A lot of people, men especially, find a lot of the meaning in their lives from the work they do.  Quitting, even if you have enough money coming in from disability insurance, is not without consequences.  If that is the right move for you, then certainly go for it.  But realize that not everyone is psychologically able to retire in their early/mid-40's.

Thanks Stump for the advice.  Dr. has changed my meds to Levodopa four times a day.  I went two days with no meds and could not believe how bad I felt.  Just more confirmation.  I would love to be in the low 200s, dont know if possible, I was a in shape, no gut 200 in 9th grade.  But your right as well,  my family Dr. has been telling me to lose wieght for 10 years, turns out he was treating me for High Blood pressure with all the wrong meds.  I was diagnosed with a rare Kydney diesease (ALdosteronism) that causes High Blood pressure and low potassium.  I have a lot of issues and i agree being several pounds lighter would help in every way.  Thanks again for discussing this with me.

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stump    463

One thing to keep in mind is that as we age we lose muscle mass.  You've obviously got a stout frame, and it's certainly possible that you'd be emaciated at under 200lbs now.  But a "lean 290" at HS graduation is probably a healthy/lean 240-250 at 43.  

 

Glad to hear you are getting meds figured out.  The agonists have a lot of downsides, and fatigue/sleepiness is a big one.  Before I ever started on meds at all I had issues with daytime sleepiness.  2-3PM and I'd be seriously fighting to stay awake.  If I could power through usually by 4-5PM I'd be OK again.  Didn't matter if I ate a lot of carbs, or virtually no carbs.  So as a result I have refused the agonists as I didn't want to risk even more sleepiness problems.  I started on C/L and haven't looked back.  Once I started on meds it got better for a while, then it came back in a big way.  Once I switched to Rytary (an extended release version of C/L) it got better again.  I'm just hoping it doesn't come back yet again.

 

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TexasTom    716

Stu,

Another one checking in.  Best thing I did was dropping from 300# to 240#. 6'3" so I never looked that heavy.

Worst part of it was early on no weight loss. Frustrating to say the least.

Rock Steady Boxing 3x a week got me moving, core exercises made a difference for my back.

Cut out all sugar. No soda, not even "diet zero calorie" as they really mess with your body. Water, black coffee, or a (one) beer with dinner.

No pasta, and cut way back on bread. Ya, no longer "pre-diabetic" as I was around 5.9, but down to 5.1 on blood sugar. (A1c)

Weight was one pound every one to two weeks, but as I got down to 240 I need to increase my exercise. Smaller portions, more exercise. Size 44 pants have gone to 38. I've tossed all my 3x and 4x t-shirts. 

Slow progress, but getting there.

Still wearing my cpap. AHI is under 5, but central apnea event's still messing with me.

Don't try doing everything at once, but if you can walk two miles a day that is a great start!

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