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Superdecooper

New guy here - a journey I'd like to avoid

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On ‎9‎/‎22‎/‎2017 at 5:38 AM, Superdecooper said:

Its probably nothing, right? Just a coincidence probably. 

Hi Superdecooper ... the first question my neuro asked on my first visit was, "How is your sense of smell?"  I told her I'd lost it 6-8 years ago.  She later told me, after the diagnosis, that it's one of the first non-motor symptoms of PD.  All the posts here offer great perspective and you can see everyone's journey is different.  My experience is similar: starting with physical therapy for a "pinched nerve in the neck" which turns out I didn't have and which didn't do any good.  But after two months, the PT suggested seeing a neurologist.  Then the tests, the DAT scan, the diagnosis.  Had all the Bradykinisia symptoms.  A story like so many here.  Exercise for me is the most important thing I do to keep up strength, flexibility and dexterity.  Something every day - walking, swimming, weights, stretching.  I added Rock Steady Boxing a year ago which is great plus meeting other PWP.  I can't recommend it highly enough!!

You'll make your way to doing what's best for you.  I've asked questions on the Forum, stayed open to new ideas.  For me, finding a spiritual perspective of acceptance helped greatly. That and exercise keep me going every day!  Stay connected, handle one thing at a time, you'll do fine!

 

 

Edited by EllenRosen
typo

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Hi EllenRosen,

Truthfully, it's only happened about three times that I can remember, but it happened enough for me to try to short-circuit my wife's complaints by getting an air freshener. The odor problem really didn't register with me as being that bad. I'm not sure I should bring it up with the neurologist because it seems so inconsistent. And how do I know if my wife was just over complaining. i'm not sure if I Should I bring it up with the doc? what do you think?

-s

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Hi Super,

All that matters is what's happening to you.  Strive for peace in the house.  Anxiety and stress makes things worse.  Your wife is likely going through her own fears about your and her future and that's her journey.  All you can control is you :rolleyes:.  There will likely be other accommodations you will both need to make and hopefully they'll be met with tolerance and compassion.

My sense of smell deteriorated over a long period of time and I didn't even notice it for a long time until one day I walked into my favorite Italian restaurant and didn't experience the automatic salivating at the wonderful aromas.  I thought the restaurant had changed but, sadly, it was me.  Try not to shoehorn your symptoms to descriptions of PD or vice versa.  Let the doctors do their job.  I kept a journal for the first year and a half and made brief entries when there was something new, no matter how small, or just to say that nothing had changed in this or that area.  I brought the journal to doc appointments and we discussed it.  It helped me see the big picture. 

 

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Superde, looking forward to having you as a probable family member here.  It's a wonderful group of caring, intelligent, and fun people, and you will fit right in.  Can't wait to read more of your poetry.

I don't think there is any doubt at all that you have PD, IMHO (said non-medically trained Linda).  :-)

Do you see the MDS's at Johns Hopkins by any chance?  Another person from Maryland (Eastern Shore area) goes to the same MDS group I go to there, as well as LAD who is from York, PA,  who goes to the same MDS there as I do.  They are an excellent group at Hopkins.

When you were found not to have carpel tunnel syndrome, was the other possibility that the doctor mentioned by any chance, "De Quervain's Tenosynovitis?"

Edited by Linda Garren

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Yes, that's it!. It was a strange sounding name- De Quervain's Tenosynovitis.  How in the world did you guess that?

I'm seeing a doctor in Greenbelt name Dr. Hussain. I'm not sure if he's an MDS or not. But if I get diagnosed with PD I'm headed straight to Hopkins or Georgetown. 

Also, whether I end up having PD or not, I might stick around this site with all the cool people here. 

-s

Edited by Superdecooper

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Superdecooper,

You need to tell your doc everything, including the sense of smell issues. Let him determine what's important or not. Dr. Pagan at Georgetown is my doctor. He's a good man and I like everyone on his team. They're very thorough and take the time to figure out what's in your best interest. He's leading the research on a cancer drug that looks to turn back the clock on Parkinson's.

Dave

 

 

 

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16 hours ago, Superdecooper said:

Yes, that's it!. It was a strange sounding name- De Quervain's Tenosynovitis.  How in the world did you guess that?  Because I also have it and was thrown by the name when the doctor told me what it was, just like you.  It's really a mouthful, isn't it.  :lol:

I'm seeing a doctor in Greenbelt name Dr. Hussain. I'm not sure if he's an MDS or not. But if I get diagnosed with PD I'm headed straight to Hopkins or Georgetown.  My brother lives in Greenbelt (Ridge Road).  I wonder if you and he live near each other.  I just love the community.  It's like living in a forest, and the little town's grocery store is nice, too.  There's just a real nice feel about the community.

Also, whether I end up having PD or not, I might stick around this site with all the cool people here. Great!  We have one or two people, at least, who stay on or come in occasionally to check in who do not think they have PD.  They have valuable postings and seem like part of our family here.  I'd love to read more of your writings.  Do you write for a living?  What you describe in the poem you wrote gets across very clearly how severe your pain is.  I hope you can get some relief soon.  I think you will find some PD help very soon. To have access to the possibilities of both JHMI and Georgetown is such a blessing.  Some people have to travel at least two hours (some more) to get to a good hospital. 

 

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Hi DaveN,

OK I'll do that. He will get the rest of my medical history  

I Just remembered a few other things that are going on that I forgot about.

 I have an Irregular heartbeat that the cardiologist is currently monitoring, I used to have chronic asthma until age 30, and I had constipation so bad in my mid 20s that I had to have an operation to remove hemmoroids. 

Ohbyeah, forgot about my ongoing battle with insomnia. 

That surgery made me change my diet and put my athletic pursuits into overdrive until a spinal injury in my mid 40s.

the asthma and roids were so long ago I totally forgot  and I'm not sure they're relevant, but I will pass them along  

 

Edited by Superdecooper

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Hey Linda,

i live about 30 minutes from your brother. 

Also yes, I write for a living. I'm not in that kind of pain anymore. I was dealing with another roatator cuff injury and buldging disc at the same time. Some of the poem rings true today, but I'm in a better place on most days. Not all in the past however, especially if it's about to rain. But I have a pain management doc who is keeping me moving with PT, injections and meds. 

My writing for a living is not creative like that poem. I have to change styles for the business press. However, I'm a pianist and composer and I may post some links to work I've done in small documentaries and CDs. 

-s 

 

 

 

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You have been through so much!  Glad to hear that you are not in the kind of pain any more that your poem describes. 

I'd love to listen to and read your creations!l Have you by any chance shared them on line before?  Not long ago I ran across another musician who had been composing music but who was concentrating more on another direction in his life (can't remember what it was).

Edited by Linda Garren

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Linda,

Yep, or as I like to put it: My interesting life continues. 

I will share some stuff later. I've got to pull it all together in one place soon. 

Edited by Superdecooper

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Well guys,

Just got back from the neurologist for a second round of tests. his diagnosis: benign essential tremor. 

He ruled out PD based on Clinical observation plus relatively normal tests for everything, including thyroid, brain scans, nerves and circulation. 

No meds necessary at this point for essential tremor unless the tremor starts to interfere with daily activities more. So just watching and waiting, including if I notice anything else going on with my sense of smell. 

He did find that I have nerves in my cspine that are worrisome, lots of osteoarthritis in my lumbar spine,  and some bone spurs that are bulging discs in L5S1 and affecting nerves in my legs. 

I'm relieved. 

And now, I have yet another medical issue to deal with.  My interesting life continues. 

-s 

 

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Good news!  ET is much preferable to PD as it's not a progressive, degenerative disease.  Not that it's a total picnic, and causes plenty of issues as it is, but given the choice I'd take it over PD.

Edited by stump

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Superde:  No rush at all.  It will be interesting to read/listen to when you can get to it.  If you're like me, I've put a lot of projects and things needing to be done on the back burner, as just keeping up with the absolutely necessary things to be done is like climbing a steep mountain.  I tend to get to the top of little hills--no steep mountains at this point.  :-)  And even those little hills are quite a challenge.  No need to add any stress to your life at this point.

And just saw your most recent post with what the Doc thinks you have.  So one or more of those problems may be what caused the bee-sting sensations you were having?  And what can be done to help take care of what he found?

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Hi gang,

I just wanted to say thank you all for your support during a very difficult time for me.

Obviously, I still have health challenges to face, but it's nice to know that a random group of people united by affliction can still care for one another. I'm really grateful.

I'm still going to be hanging around the NP board; and will chime in from time to time. 

I don't know what the long term effects of essential tremor are, but we've all seen folks with shaky hands trying to drink or write or type. I'm trying to avoid becoming that but it may be unavoidable, who knows. I'm reading up on the disorder and trying to live accordingly healthy.

I've read there are treatments and medicines available to manage it when essential tremor become intolerable, including PT, drinking beer to some extent, gamma radiation and sonic waves directed at your brain. (yikes!) So if you ever see a big green dude, shaking just a bit too much and spilling his beer, and who cant hear very well: that will be me. (smile.)

-S

Edited by Superdecooper
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Wonderful news, Superde!!  I hope you can also get the help you need for your spine and disc problems.  I've had some similar problems that were helped greatly by surgery. 

We'll look forward to your stopping by now and then and catching us up on things!

Take care.

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This feels more like I’m not out of the woods yet. Like I’m not in the deepest part of the forest, rather I’m at the edge of the trees, looking over at a green field. 

Now I have to figure out what direction to move. 

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My PD was found by accident when I got an EEG done on my arm prior to surgery for a cervical fusion. I had compression as well. The EEG doc was an MDS. Anyway, I had the surgery and got my DX a few months later. It took awhile to process it but you accept, adjust and adapt. Exercise- find something that works...keep moving!!

good luck!

 

LAD

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Another concern I have is, how do I  deal with this in public? I have a pretty public job where I’m in front of people talking, in small groups, sometimes on TV.  When I hold my phone out to interview someone, my hand starts shaking. It’s noticeable. I’m worried someone is going to say something. I guess I could train myself to use my left hand. Maybe that would work? 

- S

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With tech stuff available-Is there an alternative to holding your phone?  I read an article once about a guy with PD who had to use a laser pointer and told everyone "I have PD and I'm still using the pointer."  It broke the ice and everyone moved on..

 

good luck

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Hi guys,

Looks like I'm definitely headed back to my primary care doc and an then to an MDS for a second opinion. I'm not liking the way things are progressing. 

I've developed a resting tremor, and my hand is super stiff. Feels painful and cramped like I had been squeezing something for hours. 

-S

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Just got back from the MDS. 
 
He said ii don’t have essential tremor, but he’s not ready to call it parkinson either. He’s sendin me for a DAT scan. 
 
I definitely have some parksinson symptoms, both motor and non motor, but he wants to be conservative and rule things out. 
 
The symptoms look like parkinson but there may also be a psychogenic overlay.  In addition, my spinal cord issues could be contributing to the tremor. 
 
if the DAT scan comes back normal, he wants to determine whether/how to treat the dystonia, cervical myclonus, rem sleep disorder or some thing else that would get me referred to NIH for a follow up. 
 
I really liked the doctor. He decided to wait on a sinimet trial until after the Dat scan give more information. 
 
I go back to see him in 4 weeks. 
 
-S
 
 
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I am hoping you get some answers. The DatScan helped in my case. Because of my age of 35 at the time and the way I presented they wanted to be sure. Unfortunately my DatScan came back with results consistent with a diagnosis of PD.

I hope for you that this will lead you in the correct direction.

Good luck and Blessings

Adam

Edited by adams234

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Hi Adams

thanks for your good wishes and encouragement. 

The doc seemed really knowledgeable and willing to talk things over with me, in addition to asking some very probing questions.

. I neglected to mention to him that I'm becoming uncomfortable with being cold, sort of a mix of pain and tenderness, and maybe a little more of a tremor...I did notice my teeth starting to chatter a couple of times, but that's ridiculous..I was in doors. So I tuned the heat up.. Mrs. supes came in and said why is it like a sauna in here.

the datscan is scheduled for dec 4, so I probably won't see the MDS until mid December.  Im going to occupy myself with exercise, work and good food until then. And music. I'm not spending the next Six weeks worried about this.

-S

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