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Rebecca2z

OM GOSH YOU GUYS !

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I can't believe it my father is playing cribbage RIGHT NOW with my mother, he is counting no problem. In fact mother is having a harder time then him with the counting ! My sister sent me pic she took of them playing, I can't stop looking at it ! They upped his meds yesterday and today he picked up a deck of cards and asked my mother if she wanted to play cards !

How can this be !!

He has been sitting for almost 3 weeks staring, no TV, no nothing and now playing cards :o

 

Tears of joy !!! Just wanted to let you all know. Never give up hope ! ( I know this may not last but it might right !)

 

Hugs,

Rebecca

Edited by Rebecca2z
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Thanks Donald and lu ! Guess what he is doing now ? He is lifting up a dinning room chair exercising, says he trying to get some arm strength back ! I told my sister hurry and go get him some hand weights... This is so weird, it's like he woke up???

 

My sister keeps sending me photo's of what he is doing ( he doesn't know she taking them, using the cell phone, trying to not make a big deal )

Curious if this will happen tomorrow... 

 

Just so happy to be able to report some good stuff instead of my usual depressing posts !

hugs,

Rebecca

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Ok,  so like I am freaking out about my father coming out the Catatonic State he has been in for 3-4 weeks.

Is this what I have seen some in this forum refer to as The on-off phenomenon ?  I am googling this to find out how long this lasts.

What a strange thing this is. 

 

If I hadn't seen the photo's I wouldn't have believed it, just 3 weeks ago I saw a photo of my father just sitting and staring- lights are on, but nobody is home type of thing and now he is playing cribbage - which by the way he won, and he kept score, now he is exercising... AND a few mintues ago he told my sister he wants to drive AND he cracked a joke??? Ok I am going loony here !

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you got me Island, seriously I am freaking out... how can this be ??? They upped his meds yesterday and sometime this after noon

he like woke up !!! I mean I have the photo's - I can see him with cards in his hand, cribbage board in front of him, score pad on his side of table. OH and he asked for the TV to be on and wanted the sports channel on !

This  is weird! .....I want me some of that drug ! lol

 

Part of me wants to ask Dr. Okun but I am afraid he'll think I am nuts !

 

I can't get a thing done today, I am so consumed with trying to find info about this on line, which I am not finding much.

Edited by Rebecca2z
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They made a famous movie about the discovery of levodopa in the 1960's. The movie was made in the 1990's and starred Robin Williams as the doctor who administered the levodopa to men who had been comatose like your dad, Rebecca, for decades. The discovery of levodopa made nearly normal life with Parkinson's possible for the first time. Maybe someone can remember the name of the movie.

 

Dr. Okun will not think you are crazy. The levodopa in Sinemet (generic is carpidopa/levodopa) is why some of us wear t-shirts that say "Will Work for Dopamine"; it replaces the dopamine the Parkinson's brain no longer produces. :-P

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Wow thanks for this Beau's mom, I will google that and see what comes up, so do you know how long does it last ?

It's the strangest thing I have ever seen. ....even cracking a joke ! I am curious if he is aware of the state he was in.

 

It would seem like a cruel joke if this  vibrant, wanting to live life was taken away.... never to return or only return somewhat.

 

Yes I get it now... I would work for dopamine too ! Kind of like magical  stuff !

Hugs,

Rebecca

Edited by Rebecca2z

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That screenplay, "Awakening" was based upon the book "The Case of The Frozen Addicts" written by J. William Langston, MD and Jon Palfreman.  Pantheon Books,  1995.

Edited by Rogerstar1
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They made a famous movie about the discovery of levodopa in the 1960's. The movie was made in the 1990's and starred Robin Williams as the doctor who administered the levodopa to men who had been comatose like your dad, Rebecca, for decades. The discovery of levodopa made nearly normal life with Parkinson's possible for the first time. Maybe someone can remember the name of the movie.

 

"Awakenings"....Rebecca, if you watch this film don't get alarmed! Those patients did not have Parkinson's. They had post-encephalitic parkinsonism, as a result of encephalitis lethargica.  This form of parkinsonism is much more serious than idiopathic PD, and the response of these patients to levodopa is only temporary (and not as impressive as depicted in this Hollywood movie...) In contrast, patients with PD continue to respond to levodopa throughout all stages of their disease.

 

http://www.bjorklundnutrition.net/2012/07/awakenings/

 

"Encephalitis lethargica is a viral epidemic encephalitis that occurred in many parts of the world between 1915 and 1926. Also known as sleeping sickness or sleepy sickness, those who survived the initial infection typically displayed long term apathy, paralysis of the extrinsic eye muscles and extreme muscular weaknesses [sacks 1982]....Sacks [1982, screenplay Awakenings 1990] described treating 20 such patients with L-DOPA. The initial dose was 500 mg daily but, if required, was increased gradually to 6 g. Many patients showed great early progress, which Sacks termed an Awakening. Unfortunately, this dramatic improvement in health began to reverse

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I came back in here to tell Beua's mom I found that movie, thank you Roger, yes it's called Awakenings.

So is this a true story? I 'll Google some more.

 

AND Thank You Christie for warning me that those people didn't have PD, at least not the kind my father has.

But what a curious thing, you'd think this would drive the scientists crazy, trying to figure out how to make that

 awake-ness last.

 

I am curious to see the movie now, I am thinking I must have seen it as I love those 2 actors

very much, but I don't remember it.

 

OK Dr. Okun  wouldn't think I am crazy...lol   But really how can there be something so dramatic as my father just waking up

 that they can't figure out how to fix the problem for good.

 

Thanks for all your help everyone !

Hugs,

Rebecca

Edited by Rebecca2z
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Rebecca,

 

Thank you so much for sharing this.  I have been having a tough time these past few days and this news it very therapeutic.  It even reminds me how drastic the difference was for me when the meds started kicking in.  The thing about PD (at least for me) is when I'm in an OFF time I don't remember what it feels like to be ON, and when I'm ON I forgot what OFF was like.  I can only speculate (as my PD is not nearly as advanced yet) but in my experience it sure does sound like this is ON for your Dad, and OFF may return, but don't lose heart when it does.  This is why it is important for PWP to take their meds "on time every time." If he misses a dose or is late it may take a couple doses to get back on track.  Also don't be alarmed if he has his meds on time but a stressful or emotional day put him into an OFF period.  Hopefully with the right dose of meds he will be ON more often than OFF.  Nutrition and exercise will also encourage there to be more and longer ON periods.  Also from what I have read Dr. Okun likes to here when the Meds are working for PWP.

 

Happy for you and your Family

 

RIchard 

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Hey Richard, THANK YOU for YOUR very helpful post. You answered something that I have been wondering all day,

I wondered if my Dad was aware of his off times when he was in a ON time and vice versa. That is very interesting what you said.

 

I guess it would be torture if you were really aware of these different states. Also thank you for telling me about exercise and stress, these are very important so I will pass this info on to my family. When you say nutrition, I am not sure what all that encompasses so I need to read up. I do know about the protein being a problem with absorbing the dopamine. But if this is important to having more or longer ON times I better read up !

 

I am sorry to hear your last few days have been difficult, but yeah if my 84 year old father can have this kind of response you will have double or triple that, so keep 'swimming'.

(thanks for the tip on Dr. Okun, I will share this news with him, and hopefully my father can make that flight to Fla so he can keep that apt on Feb 26th)

 

Thank you SOooo much Brad for your kind and thoughtful post. It means so much to have the support!

 

... and Beau's Mom, aww you are so sweet~ your always here and always giving support and love, thank you. Your support is felt all through out the forum and you have helped so many and especially me !

I put the movie Awakenings in my ' Q ' tonight, I am curious about it... Hope I don't regret it... I want to know about all sides of PD, the good, bad and ugly!

( I know Christie warned me that those people in the movie don't have PD like my father does, thank you again Christie for telling me that)

 

Keep you posted...

Hugs,

Rebecca

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Rebecca there is a book on nutrition availible on this site for free. Basic premise that I follow is eat foods that encourage dopamine production, this is mostly green vegetables, which with kids in my home we have every night. Http://m.wikihow.com/increase-dopamine this is a good article for anyone as dopamine isn't just a PD thing...

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That wikihow link is awesome Richard, I 'd like to print that out, I think if I save it as a pdf I can grab it. Very interesting.

Who knew ??   ...well you did  ..lol

I will get the book on this site about nutrition sent to my father. Thanks for the great info.

Good stuff to know.

Hugs,

Rebecca

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Hi Rebecca,

 

May I ask what meds your dad is on?  From what to what?    Did he have dementia along with PD before?  My mom has had PD for 15 years now and Dementia for the past 7.  She was walking by herself until June of this year.  Because of her mind going she stopped swallowing her pills whole which forced me to crush them for her and they are not being absorbed properly..   She takes Stalevo with Mirapex.  I tried upping her intake but she started to grind her teeth.

 

Seeing this about your dad is so inspirational to me.  It's like finding the fountain of youth.  I take thousands of pics of my mom showing her progress from 7 years ago to now.  Good days and bad I don't care. I just like seeing them. 

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Hi sarahjo, thanks for your kind post, I really appeciate all the friendship here!

 

Hi Miracleseeker, You can always ask me anything ~ anytime ! I appreciate you telling me about your mother. I hope my father

does as well as your mom, so your post gave me hope ! I love that you take lots of photo's too, I am like you I enjoy seeing them doesn't matter if it's a

bad day or not. So since my sister is back in Maine with my father for another two weeks I am going to request she take a lot more !

 

Ok here's what he takes for med's- I think I have this right... ( The first time he got the PD meds was Nov 7th- I think it was, so there are still going to be many adjustments I am guessing.

 

My father  took the Carb/Levo three times a day and then it was increased to four times a day.

Currently on:
Carb/Levo-  1-1/2 PILLS (.25-100mg ea) four times a day

Lexapro went from 5 to 10 then to 20mg a day and I believe they want to raise that up again.

 

Take good care of yourself and I am sending positive energy out to your mother !

Hugs,

Rebecca

Edited by Rebecca2z

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Thanks for telling me Rebecca.  So you are saying that he just started taking the meds?     My mom started off on Sinemet at the beginning then needed Comtan and then Stalevo was invented so she went on that.  Be very careful!  My mom was over mediated for a long time due to a horrible neurologist.  I gave him a piece of my mind on the telephone and he hung up on me.  She then started seeing another doctor but I stopped the visits since last year.  She was another idiot.  Now my mom is just going to her family doctor until I can find someone I would trust.    I basically do research on my own and go to him and ask if my mom can try this or that.  He usually says yes cause you never know until you try it.    I tried giving her less and more frequently but I didn't get your results. 

 

Again keep posting.  I am very happy for your father's progress.  I know the feeling and I wish to see my mom "wake up" again soon.

 

 

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Good info miracleseeker, Thank you - Getting a good neuro is so hard and so important. I found a good one but still want my

father to see Dr. Okin, ( he has an apt on Feb 26th) Just not sure he can or will want to fly to Fla, where my parents have a second home.

 

Yes my father just started his meds about 2-3 weeks, seems longer as the stress of getting the dx and waiting for the meds to kick in

made time drag on forever !

 

I talked to my sister yesterday and my father is doing much better, more awake and most importantly he is not getting worse.  The mornings are the worst, he gets up and he is a total mess and I am not sure what can be done about this problem. But later in the day he is better, in movement and in thinking.

 

I also do my own research, I think it's important to help your doctors to help you.

 

I hope your mother is going to find a good doctor, sounds like she really needs someone to manage her meds better and then you may see some

more awake-ness !

 

Thanks for all your info and sharing your experiences. I appreciate you mentioning about being over medicated.

More isn't always better!

Hugs,

Rebecca

 

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