I have PD (Parkinson Disease)

Posted by Chris J @chrisj2491, Feb 13, 2015

I would like to introduce myself. My name is Chris and I just joined the group.
I have PD (Parkinson Disease) which of course is a neurological disorder.
If there’s one thing I’ve learned. ….it’s that everyone is “different.” It’s always good to listen and learn about others’ experiences.

@johnjames I’m so sorry to hear of your Parkinson’s. I especially admire how you are trying to be kind to the general public who does not realize what your symptoms are all about. I have a very mild form of PD and I’ve been involved with PD support groups. Have you found a PD support group in your area? A support group might be very helpful to you. I found a lot of very courageous people in the PD support group who have offered me inspiration in my journey with PD. I agree that you never know what to expect from a day. I’m not even sure, myself, what triggers a bad day or a good one. Often, though, stress or becoming overly tired will affect my symptoms. You have probably found that true as well (?) As far as the balance problem goes, physical therapy, especially balance therapy, is good for that. Finding an exercise program would be important as well. As you probably already know, PD is not something you can take “lying down” you have be proactive in your treatment and therapy.

I also want to thank you for your service to our country. It sounds as if you have and still are experiencing major sacrifices for that service and you are to be thanked and appreciated for that!

REPLY
@colleenyoung

Welcome to Connect @aperob. I moved your message to this discussion about Parkinson’s in the Brain & Nervous System group http://mayocl.in/2abXKUs. Here you can meet other Connect members who have Parkinson’s. I’d like to introduce you to @hopeful33250 @trouble43443 @ggopher @denie57 and @hdruss.

You’re not alone. We look forward to getting to know a bit more about you.

Jump to this post

Thank you John James for sharing your experiences of living with Parkinson’s here. I’m sure that @aperob @hopeful33250 @trouble4343 @ggopher @denie57 and @hdruss can relate. The stares in public when you are shaking are of course based in ignorance. So often it is left to the person with the condition to educate others.

I’d be interested in hearing from the group – What, if anything, have you said to people in public that have helped them understand?

REPLY
@colleenyoung

Welcome to Connect @aperob. I moved your message to this discussion about Parkinson’s in the Brain & Nervous System group http://mayocl.in/2abXKUs. Here you can meet other Connect members who have Parkinson’s. I’d like to introduce you to @hopeful33250 @trouble43443 @ggopher @denie57 and @hdruss.

You’re not alone. We look forward to getting to know a bit more about you.

Jump to this post

I have no external signs of PD at this time other than a little stiffness, altered gait and a bit reduced dexterity. Sometimes I am not totally focused. Since I am totally gray-haired, people I don’t know just assume it is generic old age that doesn’t merit a second glance. I don’t know what I’ll do when that changes. I’ll be following the conversation for ideas. Hope the group can help.

Steve

REPLY
@colleenyoung

Welcome to Connect @aperob. I moved your message to this discussion about Parkinson’s in the Brain & Nervous System group http://mayocl.in/2abXKUs. Here you can meet other Connect members who have Parkinson’s. I’d like to introduce you to @hopeful33250 @trouble43443 @ggopher @denie57 and @hdruss.

You’re not alone. We look forward to getting to know a bit more about you.

Jump to this post

JohnJames,
Just listening to podcast 328 by Popular Science that included a segment on Essential Tremors being treated non-invasively by high intensity focused ultrasound just approved by the FDA. One lady was treated at Weill Cornell and reference was made to http://www.weillcornellbrainandspine.org. but that page hasn’t been maintained since mid-2015. I know ET is not the same as PD, but you might ask your doctor if there might be similar work being done for PD.

REPLY

Thanks my friend- I’m willing to try anything and to into new findings and information- Thank you for sharing this with me. JJ

REPLY
@colleenyoung

Welcome to Connect @aperob. I moved your message to this discussion about Parkinson’s in the Brain & Nervous System group http://mayocl.in/2abXKUs. Here you can meet other Connect members who have Parkinson’s. I’d like to introduce you to @hopeful33250 @trouble43443 @ggopher @denie57 and @hdruss.

You’re not alone. We look forward to getting to know a bit more about you.

Jump to this post

Thanks for sharing part of your story-(ggogher) Have you found that the anxiety increases as time goes by? I was diagnosed a little over 2 years ago and the anxiety has continued to increase, the internal anxiety- I was told by a VA Agent Orange Doctor – will increase as long as Parkinson’s does. I thought, wow-that’s not an real encouragement – but the reason for those who have both, is that when I was diagnosed with agent orange Parkinson’s they didn’t tell me then of the Internal Anxiety Issues` I don’t think it affects everyone in that way, it depends if you have been struggling with PTSD, than the anxiety is doubled because of the Parkinson’s- it’s a complete difference way of diagnosing the PD then if a person who wasn’t exposed to the agent orange chemicals. I’m not sure if this is any help-to anyone. JJ

REPLY
@colleenyoung

Welcome to Connect @aperob. I moved your message to this discussion about Parkinson’s in the Brain & Nervous System group http://mayocl.in/2abXKUs. Here you can meet other Connect members who have Parkinson’s. I’d like to introduce you to @hopeful33250 @trouble43443 @ggopher @denie57 and @hdruss.

You’re not alone. We look forward to getting to know a bit more about you.

Jump to this post

I was diagnosed about 14 months ago, Agent Orange presumed. Nothing was said about internal anxiety. I was asked if I felt depressed or anxious and I thought it was a joke. Well Duh, you just told me I have Parkinson’s, what would you expect?

I’ve not been screened for PTSD but have no reason to think I should. I’ve actually improved mentally since a couple months after diagnosis as the Sinemet seems to have the limited symptoms under control and my new doctor is much more supportive and positive.

Steve

REPLY

Thank for sharing- There is many sites now-list all the health problems caused by Agent Orange ( Look at a couple 1. US Dept. of Veterans Affairs, add the search for Agent Orange Health issues, and a long list should pop up. 2. Also Military times.com list up to date health problems from AO and they center in on all the Veterans who might have been exposed, in places we would never expect ” that was sprayed”, now the Brown Water Navy- or known in Viet Nam- our Navy Gun Boats, patroling the waters and streams in Nam-they were sprayed also. I was diagnosed with ” Unknown PTSD Serve internal Anxiety over 3 years ago- and they give special medication for that purpose. You might want to think about- being screens for PTSD- if you were in Viet Nam anywhere-you would subject to the trauma-seen or unseen, for PTSD. Just a thought.

REPLY
@colleenyoung

Welcome to Connect @aperob. I moved your message to this discussion about Parkinson’s in the Brain & Nervous System group http://mayocl.in/2abXKUs. Here you can meet other Connect members who have Parkinson’s. I’d like to introduce you to @hopeful33250 @trouble43443 @ggopher @denie57 and @hdruss.

You’re not alone. We look forward to getting to know a bit more about you.

Jump to this post

@ggopher Hi Steve: Thanks for sharing about the “internal anxiety” and Parkinson’s. I’m glad that you brought up that topic. It is certainly not regularly listed in the PD symptoms. While I don’t have AO experience (albeit my ex-husband was a Viet Nam vet). I have been part of PD support groups for a number of years. I’ve heard about “internal tremors” being part of PD symptoms and I can certainly relate to that. I’ve always had what I thought was anxiety and did not realize there was such a thing as “internal tremors” which feels like anxiety. Interestingly enough, when I started carbidopa/levodopa treatment for PD the “anxiety” was reduced.

REPLY

I never heard of internal tremors or anxiety until now but they sure sound like me.
I’ve had some email problems and lost some email. I think JJ sent some other AO resources – whomever did please send them again. I’ll think on the PTSD thing. I hate to add to an already over-stressed line of guys much worse off than I am.

REPLY
@ggopher

I never heard of internal tremors or anxiety until now but they sure sound like me.
I’ve had some email problems and lost some email. I think JJ sent some other AO resources – whomever did please send them again. I’ll think on the PTSD thing. I hate to add to an already over-stressed line of guys much worse off than I am.

Jump to this post

Got it. Thanks.

Steve

REPLY
@colleenyoung

Welcome @trouble43443. I’m glad you got logged on!
I’ve moved your message to this discussion where others are talking about PD. I also want to invite @burgle to join you here.

I completely agree with you Trouble. It’s amazing to connect with others and “compare notes”. Good for you for getting your own support group started. With your help I think we can get a virtual one started here too. 🙂

When were you diagnosed with Parkinson’s? What kind of stuff are you hearing about protein?

Jump to this post

Thanks for the info about senemet and protein. My husband has been on both for several years but will talk to his new local doc about this. Also the fact of taking it with a sugary drink was interesting. Two things to do reserch on. Thanks again for sharing.

REPLY
@colleenyoung

Welcome @trouble43443. I’m glad you got logged on!
I’ve moved your message to this discussion where others are talking about PD. I also want to invite @burgle to join you here.

I completely agree with you Trouble. It’s amazing to connect with others and “compare notes”. Good for you for getting your own support group started. With your help I think we can get a virtual one started here too. 🙂

When were you diagnosed with Parkinson’s? What kind of stuff are you hearing about protein?

Jump to this post

Not sure what I posted last. Guidance from new doctor is 20-30 minute standoff between protein and Sinimet if taken with caffeinated soft drink. Diet soda is OK and carbonation helps with constipation.
Worth asking about

Steve

REPLY
@colleenyoung

Welcome @trouble43443. I’m glad you got logged on!
I’ve moved your message to this discussion where others are talking about PD. I also want to invite @burgle to join you here.

I completely agree with you Trouble. It’s amazing to connect with others and “compare notes”. Good for you for getting your own support group started. With your help I think we can get a virtual one started here too. 🙂

When were you diagnosed with Parkinson’s? What kind of stuff are you hearing about protein?

Jump to this post

@ggopher Yes, carbonated beverages or orange juice help the Sinemet go to work quicker.

REPLY
@colleenyoung

Welcome @trouble43443. I’m glad you got logged on!
I’ve moved your message to this discussion where others are talking about PD. I also want to invite @burgle to join you here.

I completely agree with you Trouble. It’s amazing to connect with others and “compare notes”. Good for you for getting your own support group started. With your help I think we can get a virtual one started here too. 🙂

When were you diagnosed with Parkinson’s? What kind of stuff are you hearing about protein?

Jump to this post

I left off a few details. Take the Sinemet with 4 oz of caffeinated soda before mealtime then he added a 4th dose with water at bedtime so I’d quit kicking so much in my sleep. Not sure it is helping. I use the 12 oz bottles of soda, one a day.

Steve

REPLY
Please login or register to post a reply.