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Newly Diagnosed

Newly Diagnosed

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#1 Jaxs1949

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Posted 17 August 2013 - 01:33 AM

Thank you for allowing me the opportunity to discuss my diagnosis. I am in week 10 of acceptance of the diagnosis. I almost immediately identified with a mantra that I found in the National Parkinson Foundation pages, "Life isn't about waiting for the storm to pass...It's about learning to dance in the rain!" So I have tried to keep that thought front and center in my mind. I contacted the Muhammad Ali Parkinson Center - Barrow Neurological Institute, to get information as well as the Michael J. Fox organization. As well as the National Parkinson Foundation for any information.
My diagnosis was rendered at the Phoenix VA Hospital June 19, 2013 by Dr. Kenneth Harris, a dynamic Neurologist. Don't think I ever had a more detailed Dr's appointment than this one. Having worked at the VA Hospital for a year and a half in the Internal Medicine Clinic I became very familiar with Dr. Harris's work. I was honored that he was going to handle my Neurology Consult. If I am going to get bad news might as well be from someone I respect. I was prepared to hear a diagnosis that my MS came back not Parkinson's. Looks like Agent Orange got me again. Thank God I had my wife of 40 years at the consult. She is an amazing woman and I know after the weeks of reading will be an awesome caretaker.
Dr. Harris ordered me to see the physical therapy department of the VA for a Berg Test because I have fallen so many times in the past 12 months. The Technician Mr. Hansen and a Dr. in training administered the exam. They were both exceptional in making me feel comfortable. They gave me exercises I could to at home and scheduled a follow up appointment Aug 29th.
Your web site has given me video's to watch. Ability to read articles written by Dr Okun and all of the health care providers involved. Not sure how this is all going to play out but I am learning to dance in the rain, taking one day at a time, and faith in the Lord Jesus above. Thank you for allowing me to vent.

#2 Donald Ennis

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Posted 19 August 2013 - 07:58 AM

Jaxs,
Welcome to our little forum, hope you find anything information you need, There are alot of good people here happy to give advise, answer questions, or just listen when your having a bad day and need to vent. There are a few more of us on here that are Vets also, I'm prior Coast Guard.

#3 Jaxs1949

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Posted 29 August 2013 - 11:44 PM

Thank you for the warm welcome. Have had a rough couple of weeks since posting. Spent time in Hospital for Kidney disease. Never sure what symptom was Parkinson's and what was diabetes and Kidney disease. I am trying to hook up with a group in Gilbert, AZ. Before I forget thank you for your service. Looks like you have a great family. Like you I am well supported by my wife of 41 years, 3 good kids and six grandchildren. One on active duty in the Army and I have a nephew that is in the Family Business (Air Force).

Having some really problems like today freezing in place and grabbing anything in front of me. Today was a light pole and the wife. Horrible. While at the VA they sent me to ER because my sugar was over 700.

Anyhow, thank you for the warm welcome. I will stay in touch.

#4 Donald Ennis

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Posted 30 August 2013 - 07:49 AM

Jaxs,
Thank you for your service also, My oldest is looking to go to the Air Force Academy next year. The youngest of my 3 kids my son is missing from the picture.
I found this site you might be interested in it is a program for VA program for PD, no one at my VAMC even knew about it until I brought it up.

http://www.parkinsons.va.gov/index.asp

I hear there are alot of great groups out there in AZ.

#5 Vanillab1027

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Posted 30 August 2013 - 08:06 AM

Welcome, Jaxs! I hope you find this forum as beneficial as I have.

#6 Jaxs1949

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Posted 30 August 2013 - 11:10 AM

Dennis and Vanillab 1027 again my thanks for making me feel welcome. Been a long week so I can only say THANK YOU.
Like those words going to AFA. I am so happy for you and him. Sure will enjoy following his steps through your eyes.
I do not understand the VA not having more PD connections. At VA yesterday nobody had anything. I found a place in Gilbert AZ that has meetings so we are planning on attending next week. The coordinator seems real nice, left a positive email.
So I have to ask is your PD a result of Agent Orange? So far the VA Neurologist I have feels it is all AO? Just curious about yours and Vanillab?
Thank you again, you made my day. Look forward to hearing back from you.

Jack

#7 christie

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Posted 30 August 2013 - 11:23 AM

Jaxs welcome !! You can vent in here all you want, it's very comforting to know there are people who can understand you like no one else can. Your positive thinking and attitude are inspirational.

I hope you will hang around and keep sharing your thoughts with us...

PS: sorry for not responding earlier. BTW, we should all do our best to welcome all newbies. How about a "welcoming committee" for the newcomers? I'm the first to volunteer !

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#8 Donald Ennis

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Posted 30 August 2013 - 11:34 AM

Jax,
My PD is idiopathic, meaning unknown cases, I'm abit to young at 42 to have came into contact with AO. I am also a second generation PWP (person with Parkinsons) my Dad was DX 27 years ago in his 40s (Young Onset like me), and Mom was DX last year at 71 years old. Most likely My PD is genetic from my Dad if you play the Odds. ( I've read about 60% of young onset cases are genetic) Although the VA has declared my Dad's PD as service connected.

#9 Vanillab1027

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Posted 30 August 2013 - 02:49 PM

Mine is idiopathic. No family history. I did grow up in a rural Midwestern community with lots of farming, so if pesticides are a cause that might explain mine.



#10 Jaxs1949

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Posted 31 August 2013 - 12:11 AM

WOW I did not know about Idiopathic. Thanks for sharing. I see the midwest connection with farming. Makes sense. Working very hard to submit PW for VA. Your web site recommendation was a real home run. Had a great chat with a VA rep that just provided a great deal of information. Left a few doors open for me to check out, so thanks for lead Dennis. I did get a nice reply from the leader of the civilian hospital, so plan on attending that next Friday. Still having problems with the Kidneys and got a consult with a VA Renal doctor on Tuesday. Still doing the frozen dance and hugging on to anything to prevent falling. Took two real bad falls on Sunday cutting the back of my head open, not enough to go to ER.

Christie thanks for your nice welcome. It really meant a great deal to me. Way past my bed time, taking care of Grandchildren just got them down. Wanted to make sure I checked in with the clan here. My sincere thanks.

Jack

#11 Jaxs1949

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Posted 31 August 2013 - 11:42 AM

Good Morning. Woke up to a full body shake. Never had one at wake up. I am amazed at the intensity. Today we are going to try walking at the mall with my new walker. Too hot to walk outside here in Phoenix AZ. So much information to read. Great videos are very helpful. Have an awesome weekend. We will keep you posted. Shout out to Beau's Mom.

#12 Luthersfaith

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Posted 31 August 2013 - 05:03 PM

Hello there Jaxs. 1949 was a great year for Chevy's.

How's the back of your head doin?

Keep those leg muscles moving!
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#13 tremblenurse

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Posted 01 September 2013 - 11:56 AM

Welcome Jaxs from another "mostly" newbie (1 month today)....There is alot of great information here and great ppl too.

#14 Lee Meddin

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Posted 02 September 2013 - 10:17 AM

Greetings all, Lee Meddin here, diagnosed April 2010 (still feels like a new diagnosis). I’ve developed a Parkinson’s news site that you might find interesting (part free, part paid). Each day I scour the web for breaking Parkinson's news; when I find something worthwhile, I post it, with a link back to the original article. Many of the articles are very hopeful, which is why I started the site. Take a look and let me know what you think, and how I can improve it. See www.parkinsonsnews.com, and reach me at info@parkinsonsnews.com. Thanks.

#15 Jaxs1949

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Posted 02 September 2013 - 09:27 PM

Hello to everyone. Hope you had a great labor day. Sad to report I spent mine in the hospital. What I thought was Parkinson's episodes turned out to be blood pressure challenges when I stood up getting out of a car. I had an outstanding Neurologist take a look at me and said that Parkinson's may have played a role, not entirely PD's fault.

Hey Lee looking forward to visiting your website. In advance thank for putting in the effort.

Hello to tremblenurse. Luthersfaith 1949 was a great year.

Thanks for being there, nice knowing your there.

#16 Daven

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Posted 03 September 2013 - 12:48 PM

Jaxs, I apologize for the delayed welcome. I to was recently diagnosed with PD in early May this year. I haven't come to complete acceptance such as yourself. Have you started on any PD Drugs yet and if yes, how are they working. I'm sorry that you have to be here. This is a good group of people who try to help one another.

Dave

#17 Jaxs1949

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Posted 03 September 2013 - 08:46 PM

Well my new great friends. Had an amazing VA appointment today to find out about Parkinson's, Renal Disease and Diabetes and my dear friend Agent Orange. Met the most amazing folks from Neurology and Renal, the Endocrine was great as well. It is a real balancing act between the teams to medicate me correctly. Passing out 5 times this past weekend was not fun. What amazing people we having working for all of us.

As I told Donald Ennis I am surprised that the VA does not do more with Parkinson's? They have groups for Renal, Diabetes put not Parkinson's. They seem to rely on the local Muhamed Ali group at Barrows or the Michael J. Fox organization? I am going to a group meeting Friday at a local hospital in Gilbert AZ really looking forward to hearing from that group of folks. Great progress for me. Thankful I have all of you.

The VA folks enjoyed my "Shaken, Not Stired" t-shirt. My wife has one that say's I am with Shaky. Got to have a sense of humor. I do think that the mantra of Life isn't about waiting for the storm to pass...It's about learning to dance in the rain" makes a great deal of sense. I guess what ever floats your boat?

That's it gang. Again my sincere thanks. Jack

#18 Jaxs1949

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Posted 04 September 2013 - 07:20 AM

Good Morning to my Parkinson's friend. Why am I up at 5:00 in the morning? I really wanted to leave with each of you an Irish blessing, I think we could use it? I hope you can? "May God give you for every storm, a rainbow, for every tear, a smile, for every care, a promise, and a blessing in each trial. For every problem life sends, a faithful friend to share, for every sigh, a sweet song, and an answer for each prayer. I just feel that we are all looking for the knowledge we might beat this? Anyhow do not mean to offend, just want to send something to each of you.

Jack

#19 Beau's Mom

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Posted 04 September 2013 - 08:03 AM

Thank you, Jack! What a cheerful thing for me to read first on my screen this morning. As I was brushing my teeth I had the words of the song "Good Morning, Sunshine!" running through my mind and was wondering how I could post it!

For your morning pleasure:


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#20 Jaxs1949

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Posted 04 September 2013 - 09:03 AM


Beau's Mom thank you for the song. Yep good memories. I had an MRI this past weekend and the first song that came on was the Beatle's Magical Mystery Tour, I new I was in sync with something higher, LOL I am sincerely glad I made you smile. Thank you also for the work you do. Keep up the work.






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