[MikeTTF]

Hi all ...

A YouTube video clip of me.

And a long rant ... (I know ... I'm preaching to the choir here, but I want to get this off my chest and possibly start a dialog)

Re: The recent MJF "issues" ... on, off and or exaggerating -

6 years post diagnosis, I still see confusion on the faces of people I personally interact with. Some who know me well (my wife) some I see only occasionally (Aunts - Uncles - friends)

Like all PWP, I can "present" as near normal, or frighteningly Dyskinetic, or as a Bradykinesic zombie ... depending entirely upon my Sinemet/Levodopa intake.

So, someone can see me just after my first daily dose of L-dopa kicks in and think, "Hey, look ... he's not sick!"

Conversely, see me later in my day after the 2nd or 3rd L-Dopa dose and witness the Dyskinetic writhing of my trunk, flailing of my legs and the evil spasmodic Dystonia ... and think ... "oh, that's what Parkinson's Disease is."

Then there's the real horror of Parkinson's Disease ... Bradykinesia. The "me" that most people have never seen, thanks to Levodopa.

It's so frustrating to deal with and try to explain ...like the affect that stress (social and self-inflicted) has on the severity of my Dyskinesia. (re: again ... MJF and Limbaugh)

Sitting quietly, alone at home ... my Dyskinesia is dibilitating, but somewhat manageable. Faced with any stress, though (social interaction - talking into a camera lense, etc.) and it flares to uncontrollable - and dare I say - exaggerated extremes.

So ....

Bradykinesia - "off" (the "real" PD)

Levodopa - "on" ... without Dyskinesia.

Levodopa - "on" ... with calm state Dyskinesia.

Levodopa - "on" ... with stress-induced / aggravated Dyskinesia.


This can be hard for some poorly informed people to suss out. And I can understand why.

Frustrating to hear news people on TV mis-identify MJF's symptoms as "his advancing Parkinson's Disease" - rather than the drug-induced Dyskinesia that it actually is. Makes all PWP have to deal with painful, ignorant misconceptions.

It's not a black and white affliction. Michael J Fox said it best - we all have our own version of the disease. Heck, I've even seen non-MDS Neurologists struggle with discussing and treating it ...

And I can even find it my heart to understand (and forgive?) Limbaugh's reaction, given his combative personality.

MikeTTF

P.S. Recently, someone here characterized me as someone who might speak for others not inclined to post publicly. I agree with this entirely and informed my decision to make this post.

[paula_w]

Nice to meet you Mike. You are so right about stress ......any interaction causes dyskinesia, just talking to someone, anything. People don't understand the illness unless involved in it somehow. It's scarier to me that the medical community has many working with pwp with little expertise--well make that no expertise.

Mike Fox would probably like to disappear and sleep for a week. But, man, has he taught a few people something these past days.

So off to vote- should be an interesting day.
Thanks for the video, my plans have changed - making one on GDNF, my first choice for a treatment.

Paula

[MikeTTF]

Thanks Paula ...

Levodopa = Can't live with it - Can't live without it.

I both hate and love the stuff. Hope my DBS reduces the Dyskinesia. (first DBS Screening visit to the Cleveland Clinic is set for December 1st)

MikeTTF

Originally Posted by paula_w

Nice to meet you Mike. You are so right about stress ......any interaction causes dyskinesia, just talking to someone, anything. People don't understand the illness unless involved in it somehow. It's scarier to me that the medical community has many working with pwp with little expertise--well make that no expertise.

Mike Fox would probably like to disappear and sleep for a week. But, man, has he taught a few people something these past days.

So off to vote- should be an interesting day.
Thanks for the video, my plans have changed - making one on GDNF, my first choice for a treatment.

Paula

[Thelma]

Mike

There are people who can talk and make everyone turn away with boredom you Sir cause me to pay attention with truth and accuracy and the one thing I admire in a human being the ability to say forget it and move ahead. Your comments about Rush put you in that most admirable group.

Continue on I am listening

Thelma

[rosebud]

I've been out of touch for the last two weeks due to a computer crash and this is the first chance I've had to really have a look at what has transpired. I saw a bit on TV, and I am incredibly impresssed with MJF and his ability to speak so clearly and to articulate and think at the same time...something I am finding increasingly difficult to do myself. Thank you to all of you who put yourself out there for the world to see. Mike, I know what you are saying and even tho your preaching to the choir, It gives the choir courage to keep going knowing we are not alone. This forum is great and we are so blessed to have the internet to communicate with each other, but I know that when I am not connected by the electronic magic window at 2 am -I do feel alone. A rant is good for cleaning out the cobwebs in our heads anyway... glad you feel comfortable enough to do it here.

[MikeTTF]

Thanks Thelma, I appreciate your comment ... very kind of you to say.

Although initially quite peeved at Limbaugh (caught me at a "bad moment") I've always been able to see clearly in all directions, not just the one my heart is pointed towards. I think I missed my calling as a mediator or negotiator.

Mike

Originally Posted by Thelma

Mike

There are people who can talk and make everyone turn away with boredom you Sir cause me to pay attention with truth and accuracy and the one thing I admire in a human being the ability to say forget it and move ahead. Your comments about Rush put you in that most admirable group.

Continue on I am listening

Thelma

[MikeTTF]

Thanks Rosebud ...

I enjoy communicating through "The Magic Window" ... I really wouldn't want to think of my life without it.

Mike

Originally Posted by rosebud

I've been out of touch for the last two weeks due to a computer crash and this is the first chance I've had to really have a look at what has transpired. I saw a bit on TV, and I am incredibly impresssed with MJF and his ability to speak so clearly and to articulate and think at the same time...something I am finding increasingly difficult to do myself. Thank you to all of you who put yourself out there for the world to see. Mike, I know what you are saying and even tho your preaching to the choir, It gives the choir courage to keep going knowing we are not alone. This forum is great and we are so blessed to have the internet to communicate with each other, but I know that when I am not connected by the electronic magic window at 2 am -I do feel alone. A rant is good for cleaning out the cobwebs in our heads anyway... glad you feel comfortable enough to do it here.

[RLSmi]

comments on your communication skills and your openness. Some of us just dont have it.
Rosebud, I feel the same way about this forum. It can get pretty lonely without it. Thanks for finding me when the old braintalk was down and this one was going. Your mail note telling me about BT2 and that you and Steve were tracking down other BT members was much appreciated.

Does anyone know what has happened to Teresa in Spain? I seem to remember seeing her post on this forum a couple of months ago, but have not heard from her lately. I think she mentioned that she had started on Stalevo, and was having trouble with it. Teresa, if you are out there we need to hear from you.

[stevem53]

Didnt Teresa mention DBS a while ago?