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DPB

Describe how you feel to someone without Parkinson's

42 posts in this topic

"Describe how you feel to someone without Parkinson's".

 

1)Great question!

 

2)Describing how we feel to someone without Parkinson's  is impossible. Non-parkies simply don't understand, CANNOT understand.  

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I agree, Christie.  One thing I've learned to explain to them basically, though, is that in many ways its a hidden disease and that it affects everything in the body.  Sometimes my outer symptoms don't show, and so people just can't understand why I'm in most of the time.  I just tell them that it's a good day when I'm out and about. I also stress the profound fatigue issue, as that is something they can relate to and understand.  But in the end, like you feel Christie, there is no way they can really understand.  When I get advice from someone without PD, I just explain that I would be doing just what they say if I didn't have PD, but that it's completely different when having PD and something that I can't explain.  That's where they stop trying to give me advice.

 

Another thing I want to mention is that I don't really have a problem saying to people that I have PD, especially in instances like when checking out in a store and am struggling with getting my credit card out of my wallet.  I'm sure most of you are familiar with that scenario--as well as trying to get coins out, which is particularly challenging.  :-)  I just simply and with a  smile say that I have Parkinson's and that it makes it hard to do some things..  They have ALWAYS (even though many probably don't know anything about Parkinson's) been very nice and say, "That's okay, take your time" and are patient with me.  I think it also might help the person behind me who is waiting to check out next (if they heard me).

Edited by Linda Garren
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Just a suggestion;  I find it so much easier to use a credit or debit card for everything.....can even keep card in pocket if need be or alone in an easy area to get in purse.

 

Most places do not even require a signature unless over $50.

 

Just pay the bill in full and you lose nothing.

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A few days ago I was talking to a colleague, after a really exhausting day at work...I told her "you don't know how tired I am" and she replied "yes, I DO know", by emphasizing the DO part, only because she had done the exact same thing and she was "tired" too. I didn't bother to start explaining her anything (and yes, she does know I have PD).

Edited by christie

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Just a suggestion;  I find it so much easier to use a credit or debit card for everything.....can even keep card in pocket if need be or alone in an easy area to get in purse.

 

Most places do not even require a signature unless over $50.

 

Just pay the bill in full and you lose nothing.

 

Thanks, ellaangel.  That is actually what I almost always do.  I agree with you.  But I purposely keep my credit card inside my wallet, where it won't fall out of my purse or hands.  I often have people call out to me that I've dropped something.  :-)  Including money.  So I intentionally make it hard for my card to get out.  Silly, but just one of my quirks, made worse by my clumsiness from PD.

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Describing PD? Hmmmmm, it quite depends on the day.

 

" A mild inconvenience that can be tolerated with the right diet, supplements and exercise. Keeping a good attitude can get you through the day. Staying positive is the secret."

 

Or

 

"Generally, my body is in chaos on a cellular level......every muscle Is busting against the tendons in a frantic attempt to escape....coiling and restless. The tendons are stretched beyond limits and snap in weird configurations while sleeping. I look forward to tremors to provide an outlet of the energy. Each day is a new measuremnt of physical/mental capacity and lessening control .... as I witness the steady dripping of my brain......drop by drop...".

 

Kinda depends on how much reality someone wants to hear and how honest I can be.

 

Which description earns more $ for research? Hmmmmm

 

Notice ads soliciting research donations for dogs never show a robust puppy? ...hmmmmmmmm.

 

I am not depressed...just a lightening bolt of reality moved in....soon, I'll be out the door , in my "old normal" masquerade.

 

New Normal....still swimming

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New Normal hit on an excellent point.  We all smile and say "I'm fine" so PD is not seen by the general public as an issue needing attention in the form of donations and research.  Everyone has heard of people faking illness but don't realize how many people go thru life faking being well.

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In short, my rigidity is significantly improved.  It's very difficult to be stiff/rigid when you're walking 8,000 to 10,000 steps a day.  The fatigue is still bad, but somewhat improved as compared to May.  My balance is poor, but the number of falls has decreased.  Tremor is somewhat worse than in May, but varies greatly depending on stress, cold, medication, etc.  

 

Sorry to go off topic for a while, but this is important...

 

Patriot, I admire your perseverance and power of will to maintain a demanding exercise regimen, with obvious, multi-level  and  undeniable benefits not only for your PD but your health in general.

 

However, I also think you are over-dramatizing the potential negative effects of levodopa- a drug you have never even tried!- while under-stating and grossly overlooking the effects of the disease. Falls, even if decreased in frequency, are an alarming sign that you should have started  levodopa treatment. I don't think there's any other way to look at this. Levodopa will only help you feel better, exercise more and derive increasing benefits from your exercise.

 

I've been on levodopa and Azilect for the last 4 years, starting 3 years after my initial diagnosis, and feel 10 times better than before starting meds.

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Sorry to go off topic for a while, but this is important...

 

Patriot, I admire your perseverance and power of will to maintain a demanding exercise regimen, with obvious, multi-level  and  undeniable benefits not only for your PD but your health in general.

 

However, I also think you are over-dramatizing the potential negative effects of levodopa- a drug you have never even tried!- while under-stating and grossly overlooking the effects of the disease. Falls, even if decreased in frequency, are an alarming sign that you should have started  levodopa treatment. I don't think there's any other way to look at this. Levodopa will only help you feel better, exercise more and derive increasing benefits from your exercise.

 

I've been on levodopa and Azilect for the last 4 years, starting 3 years after my initial diagnosis, and feel 10 times better than before starting meds.

 

Not that he needs anyone to defend him (and on the topic of levodopa I certainly agree with Christie and not Patriot) but Patriot wrote that almost exactly 2 years ago.  And I do know that he has since started to use medical cannabis to help treat his PD.  Whether he would derive greater benefit with fewer side effects from levodopa I don't know.

 

I do agree that levodopa has helped me feel far better than I did before I started taking the meds.

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 Patriot wrote that almost exactly 2 years ago.  And I do know that he has since started to use medical cannabis to help treat his PD.  

 

Ups! Sorry, I didn't notice the date of the post. I only want to help Patriot, that's why I'm encouraging him to start levodopa. I'm convinced it will help him much more than he can imagine. Plus it will only augment any other positive effect,  of exercise or cannabis.

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My PD day starts out with being unable to sleep more than 3 hours continuously.  As morning approaches, I get increasingly stiff and my back becomes increasingly painful.  If I'm lucky, I'll wake up at 6am (if I'm not 4am or 5am).  Once awake, it is difficult to roll over and get out of bed.  Once standing up, I often have shooting pain in my back, which makes it difficult to stand.  I have to sit down to put on my pants and socks or risk falling into a wall.  After taking my first few steps, I have to remind myself that I didn't just turn 100, because I feel like I'm 100 years old.

 

My first priority after getting up is to take my Mirapex.  Many days, I'll wake up with a SEVERE headache and stiff neck.  The pain radiates down into my chest and I'm also nauseous.  On those days, I also immediately take an Imitrex. 

 

As the day proceeds, I usually begin to feel better, although I'm frequently battling severe fatigue.  My walking improves throughout the day provided I keep moving; the nausea typically disappears after mid-morning; and my severe headache and stiff neck slowly fade about an hour after taking my Imitrex.

 

By late afternoon, I am often experiencing severe fatigue and often take a nap.  By evening, I'm often still very fatigued and to the dismay of my wife, I'll fall asleep by 9pm, only to be wide awake by midnight.  Fragmented sleep continues throughout the night and the whole cycle starts over again.

 

That's my PD experience.  It's not pleasant, but it could be a lot worse.

The above post is from May of 2014, almost 3 years ago. It is truly amazing the difference 3 years make!!! In many ways, I have gotten a lot better, thanks to the exercise. When I first started walking with the FitBit, I was doing 5,000 to 6,000 steps a day. In a later post, I was doing better and walking 8,000 to 10,000 steps a day. Now, I walk a minimum of 12,000 steps a day and hardly even have a memory of the condition I was in 3 1/2 years ago when I was first diagnosed. I now sleep well, often through the night. My urinary urgency is much better thanks to the medical marijuana. I no longer am stiff upon awakening. I can put my pants and socks on while standing (usually) and I rarely fall (maybe twice in the past 6 months). Needless to say, I'm off that terrible Mirapex.

 

I still have fatigue, but it's significantly better than it was 3 1/2 years ago. I think the vast majority of the improvement is directly attributable to the aggressive exercise program I follow. I also attribute some of the slow progression to the Inosine and Protandim that I continue to take.

 

On the bad side, my tremor has gotten worse, despite all the things I have tried to stop it. The medical marijuana will stop the tremors, but only for 2 - 3 hours maximum with each dose. My arm still only swings when I make it. I still have my PD mask. Still have constipation. Still no sense of smell. Still have a quiet voice and word finding difficulty. Still have fatigue, although nothing like when I was on Mirapex. I have to constantly remind myself to stand up straight and keep my head up.

 

Still not taking Sinemet or DA's and don't plan to anytime soon. At my last visit, the MDS said that I was doing "GREAT"!

Edited by PatriotM
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I'm happy for you Patriot. Remember, I only want the best for you.  I just think you are needlessly  depriving yourself of a very effective and relatively safe drug. 

 

I support 100% your decision to refuse taking a drug (Mirapex) which has made you feel worse rather than better in the past, but levodopa is no dopamine agonist. It is much more powerful, and its strong effect is not accompanied by the nasty side effects of DAs.

 

That said, if you insist on following the no-drug route, I will be rooting for you.

Edited by christie
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Patriot,

 

Have you considered dong the LS Big Therapy.  I have my arm swing back after it being gone for well over 5+ years.  I don't even have to think about making it swing anymore.  It'll also help you with your balance issues.  I had my doctor's appointment today and my MDS told me that you have to look real close now to determine my Parkinson symptoms.  Everything is really subtle now.

 

Dave

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I would certainly consider the Big program. Anything that helps. I'm currently doing LSVT and that seems to help people hear me when I'm tired.

 

That's great that you're doing so well! Exercise makes all the difference.

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For those friends who wonder "what the heck is going on, some days you are great and other days you have to cancel lunch meetings....   https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

Once I got my meds dialed in, it was a huge improvement.  MDS politely commented I should have been on them years earlier, but all in all did pretty well.

 

I do feel I get a great benefit from working out. It is both social (everyone in class has Parkinson's) and a great workout. I joke that they are good friends as I have not been attacked by sharpies. Occasional, post work out, when stretching I have fallen asleep! I don't sleep well at night, and tend to nod off during the day.

 

Now with DBS, it has made a difference as I am not freezing as meds wear off. Life is good!

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I'm happy for you Patriot. Remember, I only want the best for you.  I just think you are needlessly  depriving yourself of a very effective and relatively safe drug. 

 

I support 100% your decision to refuse taking a drug (Mirapex) which has made you feel worse rather than better in the past, but levodopa is no dopamine agonist. It is much more powerful, and its strong effect is not accompanied by the nasty side effects of DAs.

 

That said, if you insist on following the no-drug route, I will be rooting for you.

 

It's always nice to know that your fellow patients care for you and want to help you (aside from arguments, disagreements or theoretical discussions).

 

If a fellow patient showed that kind of interest for me, I would more than appreciate it, and of course make sure I showed this appreciation to him/her, even if I disagreed with his/her views.

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I don't think there are words to adequately describe how it feels, so many things affected by PD, besides the obvious things, many subtle changes... Today, I'm reacting to Sifrol ER (Mirapex ER) negatively yet again. This dopamine agonist is causing me truly horrible headaches, messing with my vision, a bit of nausea, emotional upsets and I'm still getting some freezing (scary slipping on ice sensation). It seems I can only tolerate a low dose for a couple of weeks when it seems to work well and then need a "holiday" from it until the PD symptoms become too annoying and then start the process again. My GP upped the strength & doses, added in Sifrol IR but it had the same side effects. It's a good drug for my neuropathy, especially in my legs, but I wonder what it's doing to my poor brain?! I'm going to have to wean down over the next few days & cut the pills in half, then quarter & so on until I'm free of it. I don't think it's a safe one to stop suddenly. I feel like my head is so pressurized I will explode. So, dealing with getting one's medications right is a battle in itself. I think we all need a holiday from PD. 

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