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TNdad

Diagnosed today

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Thanks, Diane for the Sinemet info. My husband has been on it for 2+ weeks now and other than sleeping a little better has seen no change in symptoms (tremor, rigidity, etc.). Except for back pain his symptoms were pretty manageable on his other medicines without the Sinemet so he may need to keep searching for an answer to the back problems and go back to just his old medicines. 

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My datscan was read as normal my the radiologist. I'm waiting for my MDS take on it. Good news for me, but am now wondering what do and how long I will have to wait before getting some kind of definitive diagnosis. My symptoms are about 90% improved with 25/100 sinemet three times a day. My dystonias have just about disappeared. I'm wondering now if this could be DRD (dopamine responsive dystonia) or some rare autoimmune encephalopathy related to my hashimotos. My last hashimotos anti-tpo levels came back over 1100 (normal is less than 40). Still, I'm very happy to have lots of dopamine activity on my dat, but am frustrated by not knowing what my real prognosis is. Has anyone else experienced this?

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Golden01,

 

Has he been diagnosed with PD, or had a DATscan? Usually, if the Sinemet doesn't relieve symptoms within one to two weeks, it is discontinued because that is a sign that PD is not the problem.

 

Dianne

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He was diagnosed with PD in 2005 but has not had a DATscan. The back pain is coming from really tight muscles so our hope was that Sinemet would fix his back. It didn't and didn't have enough of an impact on his symptoms to make much of a difference. This morning, his MDS is having him stop the Sinemet for now and he'll try some muscle relaxants and other things. One thing we've learned is not all problems are from PD. He's discontinuing the Sinemet because his other medications (Azilect, Artane, Amantadine) control his symptoms pretty well. Finding what will help his back has been harder.

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Sorry for the hiatus.  I've been going through what many on this forum have already mentioned.  I'm still coming to terms with this unpredicatable disease and have felt like a prairie dog lately.  Sometimes I come out of my hole in the ground to sniff the air and see how others are doing, other times I duck back down for solitude and denial.  I've finally found out about a local PD support group in town and will attend my first meeting this Wednesday.  It's held once a month and the speaker roster looks interesting.  I'll give it a go.   

I'm also curious if anyone has had long "off periods" with sinemet.  Specifically, I had great response for the first two months, but now have a return of my tremor most of the time and my dystonias have returned out of the blue.  I'm not sure if it's all due to the high dose steroid pulse I endured about three weeks ago which ruled out autoimmune encephalopathy, or is just what's expected with this variable disease.  My MDS has given me the option of increasing each dosage by 1/2 a pill each dose, but I got real sleepy at that level and am afraid of it effecting my ability to work. 

Well, anyway, spring has sprung, and I just decided to peek out of the hole this morning.

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I just finished participating in my first clinical trial today. I found it at the fox trial finder site. It was the IMPACT-PD study. The purpose of this study is to establish the feasibility of conducting virtual research visits with Fox Trial Finder (FTF) participants diagnosed with Parkinson Disease. It was very easy, and I got another "virtual" evaluation by a MDS. It consisted of two separate online meetings which took place at my home and at very convenient times for me. I was curious how they could pull off a neurological exam over the web. It included most aspects of real time visits except for evaluation of reflexes and balance, and included a lot more cognitive evaluation than I've received from my in office visits. I didn't even have to sit in a waiting room thumbing through a good housekeeping magazine. The only bad part was having another MDS confirm my diagnosis. Sorry, but it still stings a bit. I plan on participating in other trials if I can.

I keep looking for an all you can eat chocolate PD study or cruise ship PD analysis studies, but haven't had any luck yet. Let me know if you come across any of these.

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Come on out TNDad - the weather's fine!  Winter is over and it's a fine time to end your hibernation.  The flowers are out; the corn is up; fresh strawberries are on the table; and the sun is shining.  It's another great day to ignore the PD and go do something.  I'm going to the local airsoft field for a day of fun and exercise!  Then, when I get home this evening, I'm got a lot of work to do in the garden.  When you stay busy and have fun, it's a lot easier to forget the PD.

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PatriotM, your attitude is great and I agree with you. But, damn, it's not ALWAYS possible to forget PD. For example, whenever I tried to ignore my symptoms including a debilitating fatigue and go out to have some fun or exercise, I ended up collapsing in bed for days in a row just to regain some strength and with worsening of my dystonia almost bending me in half. Truth is I need to up my meds. I may manage to forget PD a little easier then.

 

Keep up having fun and living your lives, everyone !

 

Have a great weekend !

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True Christie. It is hard to forget I did up my Stalevo a few months back it was a great move. Plus I got off that "damn agonist"! Hope you get some energy back soon! I am like Patriot. I keep busy. In some ways I don't have a choice having four children and two of them being under 4. I still amazes me how the same disease effects us differently. Good luck TNdad.

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curious about all of you who exercise.   i can barely walk.    sinemet helped immensely, but now i feel every minute of my 65 years. i also have fybromyalgia, which can cause some major pain.  i was a waiter until i couldn't do my job and lost it in august of 2012.  i worked and ran up and down stairs for the 26 years there.  now, i hardly walk, and am getting fatter and that is not helping my bad knees ( from sports and 8-9 hrs of stairs year in year out.   surgery on one years ago helped, but it is bad again ), and walking.   how do you all exercise so much ?   some days i have to stay in bed and take advil by the handful plus pain pills, just to paint ( paintings to survive ), but i like painting at my easel.  i need to walk, but the pain gets me, so i don't, then i weigh more, makes my knees worse, and on and on and on.   before the sinemet, i couldn't walk because of the freezing, little steps, having to hold on to things etc. the sinemet freed me up, but now if i get any walking in, i have to lie / sit down.  ugly circle.  energy....ha !  i am exhausted all the time.  please tell me how you fight off the p.d., exhaustion, everything so you CAN exercise, w/o then the pain and collapse.  i feel at my age, if i don't turn this around, i am going to just get worse and worse, and just feel like a huge 80 year old.  any tricks, thoughts, ideas, systems ?   thanks, and it IS a lovely time of year.   best to all of you,  lu  

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hi roger....don't understand.  if sinemet has taken care of most of my physical symptoms,  what would stimulation do ?  i thought it was for tremors etc.    it helps exhaustion ?   and pain ?  and all of those things that are my big problem now ?    i'll do some research, and am seeing neuro on the 23rd, but maybe i misunderstand what the stimulation (  just the WORD sounds great......i'm so dull ) does.    thanks for the tip, i really appreciate it !!     lu

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I'm still very early on in all of this. Exercise does help keep me moving and increases my energy level. I get on an elliptical step machine every day for 30 minutes and alternate days with light weights. It really gets harder each day to keep doing this, but I know if I stop then I will pay for it with stiffness and worse fatigue. My wife would also kick my arse if I didn't keep trying. I'm fortunate to still be able to work full time. That too is getting harder as each week passes. My biggest concern right now is how much longer I can keep this pace up. I'm not sure which is harder, the work itself or the stress levels which accumulate during the day. From what I've seen at the local PD support group, this disease affects all of us differently and is not a one size fits all process.

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Lu,

 

I think the secret to exercising is to find something that you truly enjoy.   For me, that's airsoft, hiking in the woods, and riding my bicycle.  If you can find a type of exercise that you really enjoy, then you'll actually do it.

 

I agree with you that inactivity is a  vicious cycle.  If you don't get exercise, your muscles will atrophy; you'll become increasingly stiff;  and your weight will increase.  All those things make it more difficult to exercise and things just keep getting worse and worse.  The only way to break the cycle is to "just do it", as they say.

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hi roger....don't understand.  if sinemet has taken care of most of my physical symptoms,  what would stimulation do ?  i thought it was for tremors etc.    it helps exhaustion ?   and pain ?  and all of those things that are my big problem now ?    i'll do some research, and am seeing neuro on the 23rd, but maybe i misunderstand what the stimulation (  just the WORD sounds great......i'm so dull ) does.    thanks for the tip, i really appreciate it !!     lu

You make a good point.  While my DBS improved me in many spheres, distonia was not one of them.  Freezing has dissipated but painful joints and lethargy has not.   As a general proposition however, I believe DBS had helped me considerably.  Example: I  am just  down off a ladder where I've been painting my house whereas pre DBS I would have been still in bed at this hour on a Sunday morning.  So far today I've taken just two half pills of Sinemet.   Best to you lu.

Edited by Rogerstar1

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thank you all.   after not moving for over a year ( really moving ) it just sounds impossible and quite frankly, the idea of an exercise i LIKE now, sounds like " ugh ".  no magic pill i guess....i need to move before i can't.    i'll start with walking again, and see what i can do.   the old " use it or lose it " applies....and i desire to MOVE again, BIG TIME, so..........thanks, i'll just DO IT !!

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Hi Lu

 

Exercise means different things to different people. I am 67. I try to keep moving...all day. That is, all day that I am awake. If I am sitting, or lying in bed, watching TV, or riding in a car, I stretch or contract my muscles as much as possible. To an observer, it looks like I am holding my arm up in the sky...but I know I am in a complete stretch...as far as my muscles can go, and I hold it. Sometimes pull one arm with the other to increase the stretch. Then bend my arm to a square. Then meet my arms in front of me equally stretching both arms and my back, touching my palms together..kinda yoga style. Just moving ...moving...my arms, my legs, even my hands. In the car, I will expand my fingers and contract...simple...but moving.

 

Ok, I take the risk of sounding silly...but in the last several weeks, I have regained range of motion in both "frozen shoulders." I even think I have regained some arm swing . (Perhaps wishful thinking, but it makes me feel good believing it)

 

The stretching and isometric contractions work not only the muscles but the fascia, tendons, and ligaments helping to keep things moving and flexible. And as I do the exercise it is always with pain..."but it hurts so good!" If I don't "move" one day, I immediately feel myself stiffening again.

 

Secondly, I am very fortunate I have an exercise/swim spa. Water is an unbelievable relief to me. The weightlessness soothes the chaos under my skin. Again, I can stretch and move ways I cannot when not in water. So if there is any pool accessible to you, I highly recommend it. Moving to music makes it even better.

 

Then, I have a "Total gym" as advertised on TV by Chuck Norris. It allows for exercise that use gravity, but without strain on your knees and back. A bench slides up and down according the slant you make it, and according to your own weight...and then u can move at your own strength level. then there are exercises with cables that you work your upper body with and your arms. I have it in my dining room, so I must walk by it to get to the kitchen. I sit on it at times and just do 10 leg presses...before I hit the refrigerator..haha....OR I work a full 15 minutes...however I feel. Sometimes I just lay on the bench and allow my arms to fall away to the ground...again, just stretching and moving.

 

I am grateful I can walk on the desert..at least in the mornings...and I walk one hour...but it took a long time to work up to it. An "exercise" I do, is slip my walking stick across my back at my waist with my arms holding it at the elbows...it took me a long time to be able to do it since my arms were so stiff...but once I accomplished that, I started walking that way as long as I can...it stretches my chest and diaphragm and upper back so I am walking straighter. That cd be done with a broom handle or cane in the house...just sitting watching TV...again, stretching the muscles so the back is not drawn down into a hump....

 

Lu, this may be more info,than u ever wanted...I just wanted to show you that even if you can't formally exercise, there are still ways to keep your body flexible....I can attest to how much it has helped me....it is like I am trying to swim upstream cuz as soon as I stop, my body starts to stiffen up again...but that only reminds me of how bad I wd be if I did not try to "move" all day long.

 

I hope some of my thoughts are helpful. Good luck to you...there is hope...we can create it in many ways, :)

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Christie,

 

Your last post about not forgetting PD after exercise proved to be prophetic for me this past weekend.  I ended up falling hard a couple of time on some very steep terrain and that really aggravated my neck and back stiffness and pain.  That all resulted in me having a TERRIBLE headache on Sunday that made me absolutely miserable.  It was one of the only times that Imitrex wouldn't take care of my headache.

 

I'm not changing anything about exercising or playing airsoft (except maybe some boots with better tread), but I did pay a steep price for my exercise this weekend!

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TNdad, I'm wondering how you are doing.   My Mom, age 78, was diagnosed today.  I am in shock and am sad because I am a nurse and feel I should have recognized the symptoms earlier-  lip tremor, lethargy, gait problems, a finally hand tremor.  But I suppose the misdiagnoses just prolonged the correct diagnosis and initiation of treatment.   My Mom is having surgery tomorrow, under general anesthetic (outpatient.)  I have no idea if anesthesia will impact PD symptoms.   She is to start the Neupro (sp?) patches on Monday.  One of the first questions Mom brought up today was whether or not she should move out of her house.  . . . just don't know what to expect.

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tndad,

 

I haven't been diagnosed for pd but my doctor put me on the neupro patch,( probably because there are no other meds left I haven't tried) and it's been great. Finally to get relief from the tremors, body movements and balance issues has been great. He has said before that he didn't think it was pd,maybe restless leg syndrome, but after reading the symptoms of pd I certainly can relate to the freezing, and leaning forward issues. Has anyone had problems with being startled all the time by a noise or someone coming up behind you? This is extremly frustrating because you know something is not right and nobody knows why..

 

Gary

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Sorry I've been out of contact for a week. The Mrs and I took a much needed vacation and did the cruise thing. My first day sitting up on deck reading a book and what do you know but the group next to me included a fellow PD vacationer. She told me about another person she met earlier who was a YOPD cruising with his family. Of course the odds are that there were others on the boat which was over 3 football fields long and had over 6000 guests on board. I took the elevators alot and took it easy on port days. The ship didn't seem to rock very much, probably because it was so huge. All in all it turned out to be very PD friendly in my opinion.

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