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Superdecooper

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I forgot I had wandered out of the YOPD forum.  I'm a little more surprised that your doc is so hesitant about diagnosis.

From your descriptions I am surprised your neuro doesn't want to do sinemet.  You sound like you are undermedicated - azilect is very limited in the magnitude of symptom benefit it can deliver.  He/She may be stuck in the old thinking that sinemet gets 'used up' and should be delayed.  Recent evidence contradicts this, including the largest ever trial in PD that shows sinemet is a perfectly good drug to start with.  Definitely tell your doc about the ICD problems.  If they prescribe an agonist anyway then my advice is to run away.

On the jeans, my advice is to take them back and ask those around you to keep an eye on you.  Tell them to ask you on a regular basis if you have noticed any more impulsive tendencies (including in areas other than shopping, which I encourage you to consider - you may not even realize it yet).  Trust me, this can take control of you faster than you realize.  There is not much evidence out there for treating ICD's other than discontinuing the causative agent.  This may be another reason to switch to C/L. (But beware that C/L can come with ICD issues as well, though far less commonly than with agonists).

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So, I'm dealing with a mild case of swimmer's ear right now. That just an outer ear infection. Last week the pool filter broke and the gym replaced it on the fly without really closing the pool down or changing out the water quickly enough. This too shall pass. Doc says take ear drops, get some ear plugs, should be gone in about 10 days. I can still swim though. Which is good cause I signed up for swimming lessons at the local community center. I'm trying to learn the breaststroke, the backstroke and the flip turn. 

On the PD front, I've been waking up with a tremor some mornings - not every day, but often enough. And the occupational therapy for the dystonia in my hand seems to be helping with the pain some and grip strength. I'm supposed to get a physical therapy evaluation next week - I've got some mild freezing going on so I'm trying to pick up a few tricks on how to get up quickly and how to walk a bit more smoothly.  I'm also getting some work on knowing where my hands and are placed - hopefully that will cut down on the knocking things over.

-S

Edited by Superdecooper
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Superdecooper, my issues are mostly around stiffness and slowness, with hardly a tremor. I am low 30's and take Azilect and Madopar.  Madopar is a levadopa based drug like Sinimet. I started on Azilect only and it helped a lot with the stiffness compared to how I was before, but I was still uncomfortable and it's results were unreliable, especially when I got sick or tired etc. 

I also had trouble with knowing where my hands were and it was a bit disturbing for me. It is a strange sounding problem to try to explain. In the end Madopar helped a lot, as I think it was just a side effect of being so full time stiff, a bit like a mild version of when you sleep on your arm and you lose where it is.  

Madopar has given me a big boost to life as it means I can keep up with the family and work again. There is a downside though for me being slight gut trouble, but more that the stiffness can be a tad worse as it wears off. I take 50mg which lasts about 3.5hrs.  100mg doesn't seem to last any longer, and 25mg doesn't work at all. The neat thing about immediate release Madopar is that if you have to do any serious physical work, or you get crook, then you can take a bit extra if needed. With Azilect alone you pretty much have to deal with the consequences of fluctuations in your dopamine needs, although it does give a good base improvement for me. 

Not sure if any of that helps but thought I'd share what is working best for me so far. I'm not perfect and don't expect to be, but I am much better than where I have been in the past. 

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Hi cldm, my symptoms are similar to yours and I am on sinimet as a monotherapy.I was good with Azilect only for two months and have tried some agonist,but couldn't cope with side effects.It is good you are still working,considering how hard it is to joggle work with drugs side effect.My most troublesome symptoms are the wearing off symptoms like,stiffness,numbness and tingling of the mostly affected Lt arm and balance problems.I would say my off symptoms before I started the medications were tolerable than now that I am on meds.Dealing with symptoms fluctuations as regards your dopamine needs could be a big deal as you stated.According to Dr Okun and my MDS,good timing and close  spacing of medication are the best way to manage symptoms fluctuations with C/L.Do you have issues with sleeping?If so,how are yu coping?

 

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Hi CLDM and Oto 

My MDS is super conservative and wants me to stay on Azilect for another 12 weeks to see if the meds will get to full strength and help with some of the other symptoms - other than sleep disturbances,  which is what Azilect seems to be helping most with right now. I'm not convinced and I'm going to talk with him again this week to re-evaluate that plan. I'm sleeping about 6 hours on average, unless I go to bed stressed about something or worried, then I get the 3 am wake up routine. I can fall back asleep after a while. Wouldn't it be wonderful to sleep 8 hours again? I'm finding that tremors respond to my emotional state. I admit to being frustrated many mornings when I come to bed later than my wife and wake up earlier than her and she has slept all night long with no problems.  But she's worried about me so I don't bother her with my sleep jealousy. Does anyone else have sleep jealousy or is it just me? (I should trademark that phrase!)

I am a little less stiff now than I was in December, but I'm still dealing with feeling undermedicated. The swimming seems to be helping with the stiffness and I hope to add in some more consistent and routine stretching in my day. Ive never taken Madopar, but CLDM you make it sound both helpful and tedious to take. I wonder when Azilect wears off, or does it. I'm sure I don't have on and off periods since I'm not taking much meds right now. However, I have the most problems early in the morning and early in the evening. 

Im coming to grips with my health. I hope. At least for now. I do wonder what would happen if I stopped taking Azilect. I wonder if my body is getting accustomed to the boost in dopamine from that medicine and would get worse without it. I'm dealing with the thought of having to take PD drugs for the rest of my life. That's sort of difficult for me. I take blood pressure meds now, but as my weight is dropping my pressure is going down and I might get off them. I wonder if there's something I could do to make my dopamine act right and then get off of Azilect and not have to take any new PD drugs either.  I guess these thoughts are what people refer to as bargaining.

still trying to deal with this.

-S

 

 

Edited by Superdecooper

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Hi Superdecooper, it is funny you call it sleep jealousy.It's like we are now in a kind of sleep competition with our dw.I see it differently,because of our situation.I doubt if any pwp ever gets 8hrs of sleep without sleep aids.If you get 6hrs of sleep with Azilect,that is a big deal.I know that if you stop any PD meds the symptoms will reappear,and unfortunately we are in this for a long run,unless there is a breakthrough for a cure one day.I understand the "why me"question still lingers in the minds of most parkies,because acceptance is a difficult struggle,especially as a young pwp.I guess the earlier one accepts this new journey,the better.It is tough on everyone including the families.Hope is on the horizon,they say.May the major breakthrough happen in our lifetime.Stay positive!

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I started on an agonist but felt awfully sick and exhausted, and then swapped to Azilect which didn't work as well, but good enough for 6 months or so. I desperately needed something to get me moving properly and make me comfortable again. I think taking meds gets us more active, and being more active means more stiffness when you try to stop meds and give your body that sudden change. 

Madopar is helpful and tedious like you guessed, but I want to keep working, stay active, and run a muck with the kids, and a few Madopar during the day let's me do that. I don't take them shortly spaced enough (ie no strict schedule)  so I still have on/off time. I mentally don't like the idea of that much medication but in reality I'm probably only 1 or 2 pills per day short of not having significant symptoms. If I stopped Azilect then I would have to be much more strict with timing. 

Sleeping is so variable for me and I don't have the answer. It can be periods of 3hrs a night, to back up to 6.  I'm happy with 6, but not with 3.  My best sleep is if I've been really active during days prior and a Madopar about an hour before bed. 

Good luck to you both. I'm sure this is as hard or harder on our families than it is for us so we owe it to them to keep ourselves moving well and positive while we can. In my view, if you can't move well then it is harder to be positive and have those short moments where you can put this out of your mind. I'm hoping as time goes by I can stop letting it occupy my mind. I don't like bothering family and friends talking about PD as deep down I know everyone has their own version of a bothersome struggle. 

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Just had a conversation with my older brother and sister to let them know what's going on with me. They took it pretty well. I showed them the tremor that my hand and fingers are doing. They said, "grandma use to have the shakes just like that." 

I had no idea. 

Oh, and one other thing. my blood pressure has dropped low enough for my doctor to cut back on some of my blood pressure medicine. He's not worried, unless the bottom number drops to 60 or below. It's been in the mid to upper 60s for the last couple of weeks. 

-S

Edited by Superdecooper

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So, note to self: do not sleep without a cotton t-shirt on or your wife will look at you very strangely in the morning and say, "I had to sleep on the edge of the bed to get away from all the night sweating from you! All the way over here!"

....Oh man. Yikes. Also, Kinda funny, but okay, I get it... stupid PD is affecting both of us..

So maybe the Azilect is only having a partial effect on sleep symptoms. But also, I need to get back to daily swimming again. I haven't been swimming since last Thursday. I have to wait another six more days for my ear infection to clear up...

-S

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 I was recently diagnosed with drug induced  Parkinsonism.  When I got that diagnosis, I was very excited because I knew it meant that my symptoms were going to go away.  Even though I’ve been off the suspected medication for over two years. Then she told me, no, it’s not going to go away. Sometimes drug induced parkinsonism unmasks idiopathic Parkinson’s and it’s likely that’s what is happening with me. I understood her to mean that we just have to wait and watch. Like you, I’ve been struggling with acceptance, apathy, diagnosis, medication,… 

 Of the dozen or so books I’ve read about Parkinson’s, my favorite is  Brain Storms  by John Palfremen. It answered so many of my whys.

I believe it it was in his book that I read that of people autopsied within the first five years of a Parkinson's diagnosis, about 50% didn’t actually have idiopathic Parkinson’s. That was a horrible accuracy rate and explained why so many scientific studies had trouble. If half the candidates in a research study didn’t actually have the right disease!! Knowing that helps me to be fine with my diagnosis even though I’m pretty sure it’s wrong 😆. I know she is watching to see how my symptoms progress. 

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Hi Sherrie,

I have that book Brain Storms. I've read about two chapters. It's interesting. 

So you're hoping you wake up one morning and notice less symptoms and then it gradually goes away once your body realizes you are not taking the first  medicine that caused the problem... that your doc is wrong and drug induced PD is not masking idiopathic PD - and soon this bad dream will be over.  Did you have a DAtscan?

You sound like you are coping with things okay. so am I. Humor helps as does having a few friends and family members to talk to when things seem terrible. And of course, music. I've been listening to Andy Grammar, "Keep you head up." that makes me smile.

 In the meantime, i guess you're taking the new PD meds and exercising daily and thinking positive thoughts, right? I guess that all any of us can do. Let me know the secret to getting to acceptance if you find it. I'm still pretty far away yet...

-S

Edited by Superdecooper

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My insurance denied the datscan twice. The MDS thought that since I responded well to levodopa it’s likely idiopathic and a datscan was warranted but my insurance company did not agree. Aside from occasional times of apathy and exhaustion I keep busy and happy.  A lot of aha moments have come from this forum and support group. 

 

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Hi Gang,

Just came back from a Physical Therapist evaluation for freezing, etc. She says I'm having problems with my  brain's vestibular system, which controls balance and stability. I passed most of the tests, but i'm having some problems walking a straight line, foot dragging and perception of objects in space. I'm using my eyesight to  over compensate for what my brain should be doing to correct my balance.

The therapist said I should get the tools now to deal with balance issues, rather than wait for the problem to fully develop and then try to address it. So, it's 8 weeks of therapy (twice a week).

-S

Edited by Superdecooper

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I don't know yet. She just did the evaluation today. I go back on Monday.  I'm sure it's going to be some type of exercise I will have to repeat over and over again until I die of boredom or pain!

She sort of scared me into coming in for treatment....You could ignore this, but you won't like how it turns out... would you like to hear some horror stories?

Edited by Superdecooper

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So, the therapist did a 15 minute falling test...could have been the mini-BEST test that has a bunch of movements like timing how long it takes you to stand up, can you walk and turn quickly while counting backwards, etc. The cutoff for being at risk of falling was 23 and below, and I scored 24 or 25 - so she said I am just above borderline and there's some exercises I have to do. 

im not sure yet what exercises are supposed to work on what problem, but  it was a lot of walking on the treadmill sideways, walking along a straight line also side ways, etc. 

Seriously! I'm only 56. I really don't think this is normal that I'm just skirting a falling test.

and finally, I thought my current PD doc was an MDS. He's not, he's just a Fellow - which I guess is an MDS in training. So I'm definitely getting a second opinion. I have an appointment with an MDS in June at Johns Hopkins,  but my wife wants me to find another physician sooner rather than wait. However getting appointments with an MDS take quite a long time. I called one recommended by the local PD support group, but his earliest appointment was mid June. 

Edited by Superdecooper

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I'd love to hear more about the exercises. My pt has me doing balance exercises on a blue square foam thing...

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Hey Hiker,

Yes, I spent a lot of time on the blue foam pads trying to walk without falling off. I'm sure I hate that. The pads were placed in a straight line on the floor at the base of a parallel balance beam bar. I had to walk on those blue foam things with my eyes open and closed. She said that was to help my perception and balance. I also had to walk side ways along a straight line and squat like i was sitting in a chair without falling over. I had to walk on a treadmill - moving slowly - and look around the room for small dots of color on the walls, and doors, etc - without falling over. There was other stuff too. Level of tiredness after doing them 1 or 2. Level of frustration: 7.

-S

Edited by Superdecooper

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Just an update...latest two issues I'm dealing with.

So, I've just started having dystonia in my right foot last week. I get this kind of urge to stretch my big toe and then it goes on automatic pilot for the next two or three minutes.. sort of curling under repeatedly. My Physical therapist thinks it's dystonia and gave me some exercises to do to stretch out my foot... 

 Also, I've been having teeth chattering since December - at random moments, when I'm stressed, or cold,  lasting for two or three minutes at a time. I just came back from the dentist where she said I'm starting to grind my molars and I've cracked one of my teeth.. So I'm going to have to sleep with a mouth guard.

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So I see the Johnson Hopkins MDS for a second opinion on PD in the first week of June.

here is how things stand.. about five months after a positive Datscan and starting Azilect.

i still dont have a clear diagnosis from my PD fellow -- who just recently earned his MDS status. He says I have a dopamine deficiency and possibly early signs of PD.  He thinks the Datscan may have been a false positive, because the resting tremor I have shows some signs of entrainment, and because I was taking opiate pain medicine at the time of the test - which He required me to stop as a condition of starting Azilect.   He also sent me off for Occupational therapy for dystonia like symptoms in my hand and Physical therapy for balance and freezing issues.  

I've talked to a few other more experienced MDS about my case - not a full exam just conversations - and they also disagree with my doc's view of the Datscan results being influenced by opiates as do fellow forum members Christie and  Dr Okun. The other MDS also question how you can have a dopamine defiency and not have PD. 

I have started swimming a mile each night and have lost about 20lbs since December and cut my blood pressure medicine in half. My masseuses and chiropractor tell me I'm less stiff now, but as soon as I take time off from swimming they immediately notice it. 

Here are where my symptoms stand:

im sleeping roughly six hours a night, still sweating but manageable if I sleep in a cotton t-shirt. This is an improvement from 3 hours a night, serious night sweating, super vivid dreams, kicking in my sleep that lasted all of 2017 and part of 2016.

I still have a tremor in my right hand affecting my typing and other fine motor activities, it starts early in the morning just after I wake up and haunts me as I go about my day. But I can mostly ignore it. 

im still dropping things frequently (super frustrating). Also dragging my feet as I walk. I'm not sure about reduced arm swing, but my doc says I have an intermittent problem with that. 

my sense of smell is a little bit better - I can now identify when the kitchen garbage is smells terrible when I'm right next to it.  That's different but still I'm not smelling nearly as strongly as my wife.  I'm still hopelessly clueless about the trash cans in the garage. But ive  also been noticing fresh cut grass these days - that's an improvement.

still got hand dystonia, but I'm managing it with baclofen, but when it wears off my hand wants to close into a pain cramped shell. I'm doing daily exercises with clay and other objects to retrain my brain. 

my right toe  has started cramping and curling under - that's probably dystonia, and it started in early April. 

i have a random teeth chattering tremor that has resulted in me cracking a molar -and grinding down others - dentist is ordering me a mouth guard for sleeping at night. That started in Dec. 

stupid handwriting gets smaller the longer I write. So now I try to write short sentences or just stop in mid thought.

im freezing at doorways and stairs, especially if a door is half closed.

and I'm dealing with apathy that's affecting the quality of my work and interactions with Mrs. s, who worries about me.

I also won't be missing meals or sleep, eating too much fast food or getting caught up in family dramas - stress is just not good for me. 

I also have some of the other associated medical problems common to pwp, such as sleep apnea, vit D deficiency, hypogonadism in addition to lingering spinal problems . 

thats basiciaLy  where things stand. I could go on but that's enough.

i could really use some clarity from my medical providers.  I just want to get things settled and move on with my life.  

As always, thanks for listening  

-S

 

 

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You will probably get the universal parkinson's disease rating scale test at Hopkins. I have had it for the research studies and at my appointments. It’s pretty thorough and challenging. I get really competitive with my scores: 

we have been researching freezing....think of a song with a beat ... rock Back and forth... look at an object in front of you .... use a side step motion ... 

 

good luck! 

 

LAD

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So another interesting visit to report. The Johns Hopkins MDS says he’s not ready to diagnose me with Parkinson’s based on his exam. He’s also not ready to rule Parkinson’s out either. 

He definitely wants me to stay on Azilect, which he suspects may be masking some symptoms. That was his response when I asked if he didn’t think I had PD, then why should I take the meds. Basically, it might be working. 

He said Percocet could “theoretically” have impacted my PD positive Datscan results, but he could find no NIH studies to back that up theory. (My previous neurologist suggested that the test was a false positive due to my using pain meds during the test.) He understood the previous doctor’s reasoning, but concluded it was pretty unlikely that Percocet had any impact. Also, he’s had no patients with that experience. 

He said the tremor could be caused by a number of things, but he wants to get Hopkins radiologist to examine the Datscan and write a more specific detailed report with quantative data he can consider. 

He said the tremor could be essential tremor, or a postural tremor that is the beginning of Parkinson’s  

He also suggested I get a REM  sleep disorder study done and also said I should get a night guard for my teeth to stop my teeth from tremoring. 

Hes going to get back to me in about a week after he gets the Datscan report back. 

Im patiently waiting for a resolution to this. 

- S

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11 hours ago, Superdecooper said:

So another interesting visit to report. The Johns Hopkins MDS says he’s not ready to diagnose me with Parkinson’s based on his exam. He’s also not ready to rule Parkinson’s out either. 

He definitely wants me to stay on Azilect, which he suspects may be masking some symptoms. That was his response when I asked if he didn’t think I had PD, then why should I take the meds. Basically, it might be working. 

He said Percocet could “theoretically” have impacted my PD positive Datscan results, but he could find no NIH studies to back that up theory. (My previous neurologist suggested that the test was a false positive due to my using pain meds during the test.) He understood the previous doctor’s reasoning, but concluded it was pretty unlikely that Percocet had any impact. Also, he’s had no patients with that experience. 

He said the tremor could be caused by a number of things, but he wants to get Hopkins radiologist to examine the Datscan and write a more specific detailed report with quantative data he can consider. 

He said the tremor could be essential tremor, or a postural tremor that is the beginning of Parkinson’s  

He also suggested I get a REM  sleep disorder study done and also said I should get a night guard for my teeth to stop my teeth from tremoring. 

Hes going to get back to me in about a week after he gets the Datscan report back. 

Im patiently waiting for a resolution to this. 

- S

Well on the bright side - he’s being thorough. Not rushing into a diagnosis. I go for my yearly follow up tomorrow. 

Be patient...you’ll get your answers!

 

LAD

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"Billy Jean" popped into my head when you said to think of a song with a beat.  :-)

Scoop, does the fellow's MDS also see you?  I thought that was how it works when seeing a fellow at Hopkins, so that you get the input of two good Hopkins-trained neurologists.

Am glad you were able to get an appt. there.

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