25 June 2002--I was contacted by the executive director of the American Parkinson's Disease Association and in turn had alengthy discussion with the director of their young onset division. They are looking forward to working with YOPA and would like us to jointly hold a national young onset conference late next year.

Also have setup a good working relation with the Parkinson's Action Network in Washington, DC and am currently working on relations with the MJ Fox Foundation.

21 to 24 June 2002-- Attended MSNBCs "Summit For A Cure" in Cleveland, Ohio. The show was a bit broad and was limited on Parkinson's information. I educated those in the audience around me on SCNT.

Spent time with Lora and discussed the direction that YOPA is heading in.

10 June 2002--We are starting a non-profit (NPO) called the Young Onset Parkinson's Association (YOPA).

The mission of the Young Onset Parkinson's Association (YOPA) is to educate the American public and politicians on issues relating to Parkinson's disease, specifically those issues associated with the unique cases of young onset patients. YOPA, which is filing as a non-profit organization, consists of Parkinson’s advocates all over the United States as well as Parkinson’s ambassadors worldwide. The asociations Board of Directors and representatives is comprosed solely of people with Parkinson's disease, none of whom receive any salary for their services.

The Young Onset Parkinson’s Association strives to provide education and awareness on the subject of young onset Parkinson's disease worldwide. They help to promote all current, positive legislation and assist in the lobbying efforts to counter opposing opinions.

The associations State Representatives convey health related issues and legislation to all Parkinson's groups and patients by attending and supporting Parkinson's forums, symposiums, and fundraisers within their area of responsibility and all over the nation.

Additionally the association sponsors both local and national fundraisers providing much needed funds for advocacy and research efforts.

We work collectively with the Parkinson’s community in ensuring that duplication of effort does not exist.

We will continue this mission until this disease is no longer a threat.

25 to 29 May 2002 -- Flew to Chicago and then rode a bus (4hrs) to Peoria, Illinnois. Helped my friend Joan Snyder with her "Shake Rattle & Roll" fundraiser.

17 to 24 May 2002--My name is Tom Berdine and I am a 35yr old young onset Parkinsons patient living here in Albuquerque. Recently another young onset resident and I had the opportunity and pleasure of attending the Parkinson's Action Networks Public Policy Forum in Washington, DC. I submit to you a report I wrote in hopes that you would post it. Your co-operation would greatly aid us in raising awareness of Parkinson's disease, especially young onset, in New Mexico. If you would like to contact us on this issue, or perhaps an interview, please do not hesitate to email or call at 293-5612. I also invite you to visit my website at www.youngparkinsons.com. Thank you.

(Albuquerque-NM) -- Tom Berdine (35) and Gaylund Bowling (30), both from Albuquerque, recently joined 225 other Parkinson's advocates from across the nation in Washington, DC Both Tom and Gaylund suffer from the effects of Parkinson's disease, a condition that was once only dominate in the older population. The time was spent learning about Parkinson's Advocacy, lobbying legislators and meeting with others afflicted with Parkinson's.

Parkinson's is a progressive neurological disorder caused by the degeneration and death of brain cells that produce a chemical called dopamine. Dopamine transmits signals from the brain that tell the body when, where and how much to move. Symptoms include uncontrollable shaking, muscle stiffness and slowness of movement. Medication is used initially to help with these symptoms but many patients end up having to receive surgeries that leave a lesion on the brain or that implant simulators in the brain (essentially a brain pace maker).

Tom Berdine was medically retired from the US Air Force after a 16 year career in October of 2001 due to the effects of Parkinson's disease. He was officially diagnosed in March of 2001. He now dedicates the majority of his time to Parkinson's advocacy. He owns and operates one of the best Parkinson's websites at www.youngparkinsons.com. Recently he spearheaded a T-shirt sale fundraiser which sold 170 shirts worldwide generating over $1500 in profit. This money was donated to the Michael J. Fox Foundation For Parkinson's Research. Tom is also the New Mexico State Representative for the Parkinson's Action Network.

Gaylund Bowling is 30 years of age. Problems started to occur at the age of 28 and due to his age they could not pin point his "diagnoses" because he was so young. By June of 2001 he saw a specialist and was diagnosed with Parkinson's disease. He is still able to work full time. He attends the Young-onset Parkinson's meeting once a month for support and education. He got the pleasure of meeting Michael J. Fox and Muhammad Ail while on his trip to DC to help raise awareness and research funds for Parkinson's Disease. Gaylund also dedicates his spare time to help raise awareness for Parkinson's Disease.

They visited the US Senate building and meet with staffers working for Senator's Bingaman and Domenici. They asked the staffers to convey to the Senator's to support the following three issues:

1. Fully fund the National Institute of Health's Parkinson's Disease Research Agenda, which calls for an increase of nearly $1 billion over five years for Parkinson's research. The Agenda has been severely underfunded by the NIH.

2. Support and fight for additional funding for the DOD Neurtotxin Exposure Research Program and the Department of Veterans Affairs (VA) Parkinson's Program.

and most importantly;

3. Support federal legislation and funding for stem cell research, Somatic Cell Nuclear Transfer (SCNT) (AKA therapeutic cloning), as well as other neuro-regenerative technologies.

We are still waiting on followup communications with the Senator's offices on these issues. Both staffers were very receptive and promised to convey our concerns to the Senator's. We sent a powerful and personal message that without their support a cure for Parkinson's and other neuro-degenerative diseases may not be possible. Scientists have stated that Parkinson's is the neuro-degenerative disorder most likely to produce a breakthrough and that a cure is possible by the end of the decade--if research is funded and supported. This research would pave the way to curing other neuro-degenerative diseases.

Currently their are two bills before the Senate, the Brownback and the Feinstein. The Brownback would make it illegal for scientists to pursue such stem cell research, and penalties include imprisonment. The Feinstein Bill would allow for SCNT research but most certainly would prohibit human cloning. It is important to note that the process used for this research utilizes "unfertilized" eggs which are injected with the intended recipients own cells (often from skin cells).

The two advocates also were fortunate enough to get seats in the US Senate and witness the testimonies of Michael J. Fox, Muhammad Ail, and others. This testimony included a panel of scientists who discussed the progress of research as well as the shortfalls of an initiative by Congress to boost spending on Parkinson's research by $1 billion by 2005.

Tom and Gaylund also attended the 9th Annual Moe Udall Awards Dinner which was hosted by Michael J. Fox and MC'd by Sam Donaldson.

We urge all New Mexican's to take a few minutes of their time to call your representatives at (202)224-3121 and ask them to fully support the Parkinson's Research Agenda and vote against the Brownback bill. Additional information may be found at Tom Berdine's website, www.youngparkinsons.com, or on the Parkinson's Action Networks site at www.parkinsonsaction.org. Both of these sites offer preformatted letters on these issues that are automatically delivered via email.

15 May 2002--Well am off to PAN from 18-23 May then Joan Snyders "Shake Rattle & Roll" from 24-28 May, going to be a busy and hard 10 days. I look forward to meeting all my new friends while in DC and going to see Michael J fox & Muhammed Ali testify before Congress on the 22nd for Parkinsons and Stem Cell research.

29 Apr 2002--Had an incident today that made me realize i have Parkinson's. Went toFoley's to try on suits for next months conference in Washington, DC. I was entering an "off period but felt I could handle an easy thing like suit shopping. Well, the salesman handed me a jacket and I struggled into it, like putting on a straight jacket--could not get my arms positioned into the sleeves easily. After I did manage getting it on I buttoned it fairly easily. Then i tried to unbutton, I struggled. Tremors kicked in as did embarassment, I was trapped in te jacket. I must have looked pathetic. Finally I managed, after a houdini act, to get the buttons opened---FREEDOM! Never had I been so concious of my condition.

26 Apr 2002--Tuesday nite I couldnt sleep, as usual, so took 1 AMBIEN at around 11pm and lay down. Was till unable to sleep so worked on the PC for a bit. Started feelin odd (or good) so figured I would try to sleep again, so for some STUPID reason I popped another AMBIEN, still no luck.

At this time the TV started talking to me and everything in my apartment became animated: singing coffee cups, a demon VCR, floating bed). At first it was amusing then became frightening so I called Naomi like around 3am. During the course of telling her what was going on I decided (or so she told me) that I was going to bed and hung up. I may have popped another sleeping pill, at this point things are blurry.

4am (according to Naomi) I call Naomi again. Telling her I had taken like 5 pills and demons were telling me to stab myself (telling it like it was, no sugar coating from me). Then she said all she heard was "ZZZZzzzzzzzzzzZZZZZZZZZZZZZZZ". Or was that the 3o'clock call?

At some point Naomi showed up at my door, she found me in my tighty-whities, my eyes red as sin and pupils fully dilated. She says I was rambling about race car toys and other gibberish. At some point (time is forgotten), she called poison control. They said I needed to come in for a stomach pump. I guess I freaked out "No! They will put me in the mental ward!" Then some stuff about an ambulance, me wanting to go for a drive, then for a hike (In my underwear). Somehow I got dressed, grabbed a few "misc" pills and swallowed them as she tried to take them away, then I remember being in her car, she was "secretively" trying to take me to the hospital. Somehow I got out, jumped a fence (not very quickly or flawlessly), and headed to the mountains for a hike. Naomi tried to follow and stop me, but by the time she turned around I was gone. Somehow I walked across a freeway and through several neighborhoods, down a spillway, and up into the high desert. Intent on conquering the mountains.

Again, I have no concept of time. I took the 1st pill at 11am Tuesday nite, I was told I went for a "walk" around 10am.

Ok, so there I am climbing this mountain, or rather stumbling up it. I remember taking off my shirt to walk. It was hot (76). I remember looking for the perfect rock to sleep on, in the sun. Went through like 4 or 5 I think. Again, time is lost. Then I was walking down the mountain, stopped at a Circle-K for a big gulp, I was a tad thirsty, and headed home. I walk in to find my mom, oh boy, I was still a bit buzzed. I guess I passed out at this point. It was about 2p.

During my "adventure", the city cops were called (didn't offer any help), State Police (put out an APB), Naomi, my sister, and dad were scouring the area thinking a PWP couldn't go far w/out tiring.

To sum this up:

1. AMBIEM is a very powerfull hallucinegen. No more for me. 3rd time I have had problems w/it.
2. If you do take a sleepng pill--go to sleep.
3. Thank god for Naomi.
4. Next time I go hiking, bring lotion and water!

21 Apr 2002 -- Once more I find a month has passed me by, and once again much as happened.

I am starting to feel more rigidly and slowness throughout my shoulders arms hands and that and back. It is gotten so bad that I have started using my Dragon NaturallySpeaking voices recognition software to help me answer e-mails. This may be due to the fact that I have stopped taking all my medication except for SINEMET.

I'm trying to get back into shape since the weather has gotten nicer. I have been going for hikes in in the foothills close to my apartment, and these really make me feel a lot better.

As usual I miss my daughters greatly, but seeing how they are five hundred miles away there is little I can do to remedy that.

Financially things are pretty rough since I moved into my own apartment. I find that with these new bills mining disability from the military lasts me about half month. Thank God for microwave dinners! I to have a an interview with ball aerospace this coming Friday. But I'm not counting my chickens before they hatch. And even if I do get this job it will involve lots of traveling and long days, not having worked for year I am not sure if I can do that. But the job is in line with what I did, and loved, while in the military.

On the other hand, the veterans association is putting me into a programwhich will pay for my educationas well as a monthly subsidy. Additionally I picked in the Microsoft certification and Internet Webmaster programs for them to pay for, about $13,000. However they feel that my hands may be an issue in computer repair so they had me choose an alternative. I chose physical therapy assistant. This would be four to six years of college,paid for, and also a monthly subsidy. I find out more on this in June.

Next weekend I am planning to go camping with my dog, I just need to get away for a while and in enjoy the tranquility of the mountains.

I will be attending the Parkinson's action network public policy forum in Washington D.C. from May 18 through May 23rd, where I will receive political advocacy training, attend various functions, and watched Michael J. Fox testify before Congress. I very much look forward to this trip.

I'll try my best to make journal entries on a more regular basis.

21 Mar 2002 -- Nearly a month has passed since I had a change to write in here, and so many things have occured. Let me see where to start:

- Well my 3 daughters came to visit me for spring break, a week, I so enjoy having them around they surely make me forget about the Parkinson's. As always I was extremely saddened to see them go (500 miles away), and after I returned from dropping them off I started crying and could not stop. Over the last year and a 1/2 I have seen them maybe a total of 20 days.

- My own place. Took the big step of getting out on my own and rented a 1000sq ft, 2 bedroom apartment. This will strain my financially on my fixed disability income but I have to try to make it on my own again. So far so good although maybe a little bit too quiet.

- Job offer. Had a job offer to be an account executive at a computer training center, basically a telemarkter. I took the job but later decided it was not for me and that I did not fully analyze the situation.

- Therapy. What can I say? The treatment that Ruth, my PT, gives me is fantastic. She said not to write this but she even "popped the pimples on my back" (I am having some problems with pimples on my back which I never had before).

- Meds. I am so screwed up. Of the SINEMET, SELEGILINE, and PERMAX I am only taking the SINEMET.

Well, thats all of the pertinent things occuring in my life at the moment. I take each day as a new begining.

27 Feb 2002 -- Physical therapy going well, slowly my endurance is improving. The best thing is the massage therapy (ultrasound/estim), this helps more than anything. Ruth, my therapist, gave me her TENS machine to use until I get my own from the VA. This little machine works wonders! I highly recommend anyone with PD to see a physical therapist and have the ultrasound/estim therapy.

Spoke with my neurologist and he said to go ahead and start the Indian herbal treatment "Ayurveda" but to stay on my normal meds. He sent me a new titration schedule for the permax and says it should help with my rigidity, which has gotten worse as of late. He also put in a prescription of Celexa for me (anti-depressant) but wants me to see a psychiatrist as well, so I will make appointments with psychiatry and optomology ASAP.

I get keys to my own apartment tomorrow, this will be a HUGE financial and emotional challenge but I have to try to get back out on my own.

Coming Soon! 2001/2002 Parkinson's Unity Walk at Central Park, New York

18 Feb 2002 -- Once upon a time I was happy. I was married to a woman whom I thought loved me, I certainly loved her, and had three fantastic daughters. That is all gone now, it has been for a year. Everyone tells me, "You still have your daughters", but they are over 500 miles away. I'm at the point where I want to see them but don't want to, if that makes sense. You see, when they visit or I speak to them on the phone they always go away. And someday, another man will be with their mother, he will get to see them everyday, play with them, do their homework, go to teachers conferences, fieldtrips, be there for their first date, first dance, report cards, and all the stuff I was looking forward too. Perhaps someday I will understand this better, but for now I am deeply confused and starting to feel the icy cold fingers of depression grasping at my throat once again.

15 Feb 2002 -- Well I thought things were going ok. The military and the VA disabled me at 80%, but Social Security says:

"The medical evidence shows you have Parkinson's Disease, and that you have responded well to treatment" --um ok who said that? --

"While you are limited on your ability to lift and carry you are not considered to be totally disabled at this time. You have some major problems with depression, these are not thout to be totally disabling"

--funny the eval write up stated I had possible intentions of harming myself--

"Overall you are assessed as capable of at least routine UNCOMPLICATED work at light levels of exertion"

--Is Wendy's hiring? Glad I worked in Intelligence for 16 years--

So I guess I look for a job and try to juggle a job, my bi-weekly hospital appointments, my meds, and the on-off effect. Sounds like a challenge. But I will go ahead and draft an appeal, guess it won't hurt.

7 Feb 2002 -- Started my new physical therapy program at the VA Hospital. My therapist, Ruth, has started me on an endurance & strength program. She had me do stationary bike, treadmill, hand treadmill, leg stretches and lifts, all followed by climbing 12 flights of stairs twice! I am very happy that I have such an involved and pleasent therapist, now to find a neuro who is 1/2 as good. Ruth introduced me to an 80 year old Parkinsons's patient, a Navajo indian, a very nice man. It somewhat alarmed me since he could barely walk or talk.

Hot News: Abraham Lieberman, MD – 1/30/02 – National medical director of the National Parkinson Foundaton shares some of the latest information on the disease. Click HERE to listen to the 15 minute audio interview.

1 Feb 2002 -- Realized yesterday that I am sick, and am not going to get better. Started struggling with this and having visions of wheelchairs, brain surgeries, and even death. Went cold turkey on my meds, stoped eating, and tried to push away someone very special to me. Realized also that my knowledge on Parkinson's is nothing compared to the hundreds of people I communicate online with, I have much to learn and hope I can do so.

24 Jan 2002 -- Where did sleep go? All of a sudden I find myself not finding sleep anymore. I lay in bed and am constantly barraged with cramps in my legs and arms, constant burping and farting. This has been occuring for a good week now. And when I do manage a few hours rest I awake to a body that is hesitant to move. My arms are frozen in horrible and painful positions and my legs don't listen, it takes extreme effort to straighten myself out and stumble for my SINEMET and cup of coffee.

I have been working daily on the site and have associated youngparkinsons.com with amazon.com, you will find a link in the upper left corner to a page outlining the benefits of using amazon.com from this site, please visit the link.

Upcoming Event: 2002 International Gala For Hope

Hot Site: Petition to President Bush to Permit Federal Funds for Stem Cell Research

18 Jan 2002 -- Neurology appointment with Dr. Gordon, Director, Neurodegenerative Disease Program at the University of New Mexico, my primary Neurologist. Overall he feels I look good and am doing well. He decided to keep me on the SINEMET and SELEGILINE both two times a day. He is adding an agonist, PERMAX, which I will slowly tritrate up on over the next few months. He also prescribed TRAZODONE to help me sleep, I have not slept in 3 days.

Added several "surveys" on the main page of the site, hit HOME. Refresh the page to get to the other surveys. If you have a survey in mind feel free to email me and I will post it for you.

Hot Site! Young Parkinsons UK

15 Jan 2002 -- Wonderful day! Attended my usual pool therapy but following the class my therapist, Ruth, took me back to try some techniques on my neck, shoulders, and back. She did a combination of ultrasound/electrical-stimulation, ice massage, and myofascial releasing techniques (MFR). During these procedures I literally felt my muscles "jumping" up and down my back. I was very satisfied with the results of the techniques and look forward to more.

• The primary purpose of electrical stimulation is to control pain, contract muscle tissue to decrease atrophy, increase circulation and tissue temperature, encourage the breakdown of adhesions, and reeducate muscles. Electrical stimulation is delivered using electrodes that are placed directly on the skin in specific locations in order to activate (contract) the appropriate muscle. Many people describe the feeling as a pins and needles sensation.
• Myofascial Release is a technique that works with fascia, not muscles, to relieve pain. Fascia is the sheet of connective tissue that surrounds every muscle and connects muscles.

Hot Site! Joseph Jankovic, MD, Houston, Texas

8 Jan 2002 -- Have attended two pool therapy appointment so far. My class consists of 4 people, 3 of which are over 70. They are all nice and understanding and I am enjoying it so far but have yet to see any beneficial results. I still await my VA evaluation results, and have started the social security process. My goal is to afford an apartment and get out on my own. Ii have an appointment with my neuro doc from UNM on 18 January.

Had a problem the other night. Was going out to eat with my parents and I was in a rush, so I popped my SINEMET and SELEGILINE Well, I started hallucinating, really bad, road was waving, cars were morphing into each other. I laughed about it. Then dinner came, I got a beer, then from there all I remember is getting home (dad was driving whole time) and realizing I mistook my sleeping pill (AMBIEN) for the SELEGILINE Oh what a night!

1 Jan 2002 -- Happy New Year to you all! As I look back at the past year I can't help but to think "How in the hell did I survive?". The year 2001 will be one that I will never forget no matter how hard I try. My wild ride began on 31 Dec 2000, I had already been diagnosed with PD and was in the process of finding a suitable medication and my marriage was starting to nose dive. The rest of 2001 brought forth my wife and kids leaving, my firm diagnosis of PD in March, major depression, suicide watches, loss of my security clearance, and ultimately the ending of a 16 year distinguished military career. By August I found myself, and still am, unemployed and living with my parents.

But, 2001, also taught me some valuable lessons. It taught me how much my kids mean to me, and the true value of good friends and family. It taught me it is better to give then receive, and that is is good to forgive (although hard).

I look forward to a new beginning this year. And I have many plans to redo this site and get more active participation here.

God bless you all. -Tom Berdine

Hot Site! Ayurveda can cure Parkinson by Dr. Mukesh B. Paneri

21 Dec 2001 -- Physical therapy appointment at the VA hospital. Standard muscle checkup and questions. I will be starting my pool therapy twice a week in January to loosen up my neck and shoulder stiffness. Chat room is working well, I am going to host weekly chats there every Friday at 9pm MST

Hot Site! Bootsnet by David Boots

19 Dec 2001 -- Fixed the chat room. Believe it is much more easy to use now.

Hot Site! Parkinson's Disease: A Thorough Review

4 Dec 2001 -- Visited my Primary Care doctor today due to increased pain in my left shoulder. Over the last two days I have developed a piercing pain in my left shoulder that comes on when I elevate the arm or move it horizontally. Not sure if this is a Parkinson condition or possibly a side effect of the SINEMET or SELEGILIN Doctor had no clue, and referred me to physical therapy and registered me for pool therapy. It is very difficult to dress/undress due to the pain.

Hot Site! Parkinson New Zealand

28 Nov 2001 -- Went to the VA Neurology appointment. They concur with my diagnosis and are submitting the evaluation. Just have to wait for the outcome now. Was quite surprised to find that I am weighing 140pds, I had been down to 115 around February. Depression caused that.

Hot Site! How our brain controls our movement.

21 Nov 2001 -- Received my VA Neurology appointment for the 28th of November. Preparing for my first Thanksgiving without my daughters, it will be difficult but I must face the fact that I am no longer a large part of their lives.

14 Nov 2001 -- Went to the VA hospital to get evaluated for disability. Saw psychology and a general practitioner for a full physical. Psychologist recommends I get back on antidepressants and attend group. Not sure how I feel about either. The general practitioner is recommending the VA also have me see a neurologist (again), more to follow on that. They have one month to finish the evaluation. Had another job offer at Sierra Vista, AZ. The job would demand lots of worldwide travel and is a year contract, hope to hear more today.

2 Nov 2001 -- Received notification from the VA today for me to report to the VA hospital for testing in neurology and psychiatry to determine my VA disability. Here we go again. That will be on the 8th. At this point I've decided not to file for social security as I feel I can and want to work. I've had lucrative SIGINT job offers at Cape Canaveral, NORAD, and Sandia Labs.

I'm tapering down my meds so I can appear worse off at my appointments, hands are suffering most so far.

29 Oct 2001 -- "A Letter From A Friend". Found this in the book "I's All In Your Head" and wanted to share it with everyone. I also provided a link to it at the top of every page. This letter expresses how I feel almost to the tee.

Hot site! Tests for Parkinson Disease

Good read! "It's All in Your Head" by Russell J. Ahlstrom

28 Oct 2001 -- Woke up today to find my van had been broken into and my CD player stolen, the civilian life is going to take some adjusting. I don't understand people. I feel like the SINEMET is not working lately. I am very shaky at times and have increased dsystonia in both feet. My stomach still jerks as and my hands are stiff. My biggest problem know is my eyes, they are always buggy and strained. Depression seems to be coming back as well, I am going to make an appointment for more therapy and see about going back on CELEXA. I will be going to an acupuncturist next week, he believes he can help my rigidity in my neck and back.

Hot Site! The Healing Kitchen

22 Oct 2001 -- Spent all last week in Chicago for my grandmothers 86th birthday, had a wonderful time. Still taking the combination of SINEMET and SELEGILINE, no major differences noted although the SELEGILINE tastes horrible. Have noted increased active tremor in my left hand, sometimes uncontrollable, also my stomach is weak and "jerks" at times. Last night I had another bad swallowing episode, chicken lodged in my throat and I could not clear it. Eventually my throat reflexes vomited it out, was a long scary 1 to 2 minutes.

Hot Site! Frequently Asked Questions About Deep Brain Stimulation

9 Oct 2001 -- I am back! I have been in New Mexico for about a month now and finally received my computer. I really missed writing in the journal, time to catch up.

I officially retired from the Air Force on 18 Sep 01 and am waiting on my official forms so I can put in for disability social security, I am also looking at several job options. I visited my daughters in Phoenix 4 weeks ago, was good to spend time with them but was so hard to say good-bye. I guess that depression will never go away. I have giving up hopes of reconciling and am focusing on me.

I am being seen by the head of Neurology at the University of New Mexico, will visit every 4 months. He expressed that I should get off the SINEMET as it is better suited for later stages, however, when I am not on it I can barely move. He also started me on a additional medication called SELEGILINE I am taking it in conjunction with the SINEMET

As far as my current symptoms: I am still walking much better with good armswing but still have noticeable stiffness in my left hand, arm, and neck. My eyes continue to feel strained. More to follow.

Hot Site! Parkinson's Power Across America

20 August 2001 -- Neurology appointment. The final appointment with the chief of neurology here in Hawaii. I explained to him that I have not taken medication for over a month, that medication being REQUIP. Told him that the medication only resulted in me feeling very nauseous all the time. Asked him to start me out on SINEMET CR, which he agreed to. I started the medication today. I also had an appointment with the speech pathologist. Again she has been very helpful. We reviewed some more face and tongue exercises and performed some pronunciation drills. She had talked with the local Parkinson's support group about locating a group for me in New Mexico but there are none, at least none are registered. I'll look into a group when I get to Albuquerque and if I find none I'll attempt to start one. I had a very serious and disturbing choking episode today while eating pizza. Food became stuck in my throat and I could not clear it, I was very panicked. After about 45 seconds of gagging and nearly vomiting three times I managed to clear my throat, this was not a very pleasant sensation. On a final note my computer will be packed out on Wednesday and I will not able to make any further entries or page modifications until I get it in New Mexico, hopefully late September. Until then I can be reached at tomberdine@hotmail.com or phone number 1=505=293=0379. I will monitor the guest book and message board daily. I hope to see more participation on the message board and mailing list. Talk to all of you soon.

19 August 2001 -- I finally met another Parkinson's patient, I am not alone in the world! We talk for a good hour and I was very happy to be able to compare symptoms. I look forward to meeting others.

17 August 2001-- Added a message board section called "Minds Spinning", feel free to set your words free here. I added some prose from a rough time from early this year. It's amazing I made it through that time alive. I also added a websites folder where everyone may post their favorite Parkinson sites. And YES, I did order a T-shirt and designated the MJ Fox Foundation as my donation. :) Also I added the Reading Room at left, it will be for books YOU recommend, send me the titles & your narrative.

Hot Site! Get a personalized T-shirt & support your favorite charity! Choosing the Michael J. Fox foundation!

16 August 2001 -- Somewhat depressed today,realize that I will be retiring and from the military next week and my wife and children will not be there. I still refer to her as my wife because she has yet to divorce me. I guess I am still holding out for miracle. I just wish that I could stop loving her. My father will arrive tomorrow night. Had a speech appointment today, I really like the speech therapist she has helped me a lot. Today we were reviewed the face & exercises and recorded a conversation. She is looking into a Parkinson's support group for me in New Mexico. I asked her about "saliva control" medicine that I read about but she had not in heard about it. I have an appointment with the chief neurology on Monday, I am going to ask him if I can try SINEMET Saturday I will meet with another Parkinson's patient, my first experience and I look forward to it. Finally I will be able to talk to another person who understands the mental, emotional, and physical aspects of Parkinson's.

14 August 2001-- Having some difficulties storing energy. I find that when I go to sleep at about midnight, using AMBIEN,I wake up around 6 AM then lay back down until 11am. Throughout the day I'm fairly active but once I come home I run out of power. CREATINE is giving me a energy boost throughout the day, I take it when I wake up and after lunch. I'm still not taking Parkinson's medication. I will contemplate resuming it after I move to NM.

13 August 2001 -- The reason I started young Parkinson's.com was to give us younger people in place to share our thoughts, ideas, and experiences. Currently I have gotten many letters from fellow PLWP, however, I have yet to see the message board or the mailing list takeoff. Hopefully over the coming weeks we will see a change as more people find the website and make it more interactive. Please spread the word to what ever Parkinson's communities that you may be a member of, and perhaps we can start some message board dialogs and get everybody to use the mailing list. I will be without my computer for about a month due to my moving from Hawaii to NM, it is my hope that I will return to a more dynamic community. I am very flexible as to what goes on the web site and can make changes rather easily. For example I can add new topics to the message board or even possibly give everybody a section to run their own journals. The question is how do we get more people onto the website on a daily basis. The big three websites that I know are PLWP and SLWP as well as the Michael J. Fox foundation side. However, wouldn't it be fantastic if Michael J. Fox found our site and became a member. How do we do all this? Quite simple -- we advertise! I firmly believe that young Parkinson's.com in the rudimentary form it is currently presented, can be changed dramatically, not by me but by everyone visiting the web site. This is not my web site, this is our web site. I hope that through your help we can improve the website quality and layout. You can e-mail me your suggestion and I will make it so, within reason, we can put together a young Parkinson's community here at young Parkinson's.com. I would love to see the message boards come alive with personal stories, emotional poems, and deep dark truths. In time, it is my hope that not only young Parkinson's patients come here, but patients of all ages who may help us younger generation understand the challenges which will fall ahead. If any of you would like to help with the design and web site function, and you have some web site development background I'm very happy to give you passwords to get into and edit or add to the web site. For example there are many Parkinson's events running continuously around the world. We need volunteers to seek out and post these events onto the message board or I can provide a special events page. Some of you could also register the web site on the various search engines. Or those of you going to conventions could possibly mention our community or have some simple business cards made for the occasion. In closing I believe the site is doing well, from looking at the statistics, we are hitting traffic from all over the world. However, very few took the time to sign the guestbook. The mailing list is devised so that anybody that is a member of the list can alert other list members of pertinent Parkinson's issues. The message board is devised to open a dialogue between members, and possibly provide a place to write stories or poetry. We can do this together I cannot do this alone. Thank you --- Tom Berdine

9 August 2001 -- I bought some chewable CREATINE tablets, the plastic tablets are very difficult for me to swallow. I've not taken my Parkinson's medication in a month, as it does not seem like it helps with the stiffness or the rigidity. I find the creatine certainly helps me. More information on creatine and Parkinson's may be found on the links page. I watched the presidential announcement on stem-cell research. Some information follows:

*Multimedia! The stem-cell animation

*News Bite! The stem-cell debate

*News Bite! Bush to allow limited stem cell funding

8 August 2001 -- Speech therapy appointment. Reviewed the video of my swallow tests they upgraded me from a mild to moderate swallowing problem. Was given exercises on how to massage or and stretch the muscles in my face and how to exercise my tongue. My therapist also name in the name of another Parkinson's patient she works with, I will call him tomorrow. Trying to get the news ticker of the top to show current Parkinson's related news, please bear with me.

7 August 2001-- Occupational therapy. "Mr. Berdine has difficulty with all fine motor tasks, impairing his functional ability. He currently expands much energy to complete these tasks. He has a good rehabilitation potential to improve his functional ability with the use of some education on energy conservation techniques and with the use and aid of adaptive equipment. Our two-week goals are as follows":

1. Independence with buttoning using adaptive buttoning device.

2. Independence with zipping using adaptive device.

3. Independence with bathing self using a adaptive washcloth.

4. Independence within food using a rocker knife.

5. Independence with writing using a adaptive pencil.

5 August 2001 -- I will be sponsoring a chat on Saturday, eleven August, in the chat room on the left-hand bar. The time will be at 12 AM central standard Time. If participating please e-mail me ASAP. Hope to see you there!

*News Bite! Bush ponders idea on stem cell study

4 August 2001 -- Added chat room & working on donation page. Also thinking about putting in a black and white photograph page, my new hobby. I am very impressed with the amount of traffic generated by this site in the last two days, it is my hope this web site becomes highly user active and a main place for all those with Parkinson's to meet and discuss/share our experiences.

3 August 2001 -- For the last few weeks I have noticed a strange sensation on the skin. It feels as if some type of insect is crawling all over me, but there's nothing there. Sometimes it wakes me up. Had a last visit with Dr. Lee today, I pointed out a white bump on my jawbone. He diagnosed it as a cyst and said it was nothing to worry about. Last month he removed a benign mole from my lower back.

31 July 2001 - Occupational therapy appointment. The therapist gave me several items to help with daily living. Including, a buttonhook and a rocker knife. Next week we will begin fine motor skill therapy.

30 July 2001 -- Psychiatric appointment. Downgraded from severe depression to moderate. I took myself off of depression drugs (CELEXA). Got a refill for sleeping pills (AMBIEN), although I am addicted the doctor feels they are safe, and they are the only way I can sleep.

29 July 2001 - Performed barium swallow tests at the Tripler army medical Center. Mild problems noted. It takes me to 2 or three times to swallow fluids or solids. Some weakness was noted in my lower tongue.

5 July 2001 -- United States Air Force approved me for "temporary retirement ". Retirement date is 18 September 2001. I will be reevaluated in 18 months. Disabled at 80 percent.

1 Jun. 2001 -- patient started on REQUIP. He continues to suffer from flat affect, tremors with intention and at rest, monotone speech, cogwheel rigidity,ataxic finger to nose, slowed rapid alternating movements, abnormal gait with a narrow stance and a lack of arm swing.

27 April 2001 -- patient seen by Dr. Cannard. Confirmed that the patient has Parkinson's disease. The patient had a positive response to SINEMET therapy with an improvement. Is unified Parkinson's disease rating scale from 29 to 23 one-hour after it does of the drug. He found "no clear a typical feature or features to suggest secondary Parkinson's or Parkinson's -- plus syndrome". Final comment was "it is not uncommon for early onset patients to have a fairly rapid course as this patient has had." His current symptoms affect his independent activities out of daily living. He has a significant loss of dexterity in both hands which causes great difficulty getting dressed, and bonding shirts, typing and right team legibly. His voice has become softer and more difficult to understand. He asked if some difficulty swallowing as confirmed by a swallow study, and has difficulty controlling saliva excretions. He has difficulty walking because of cramping in his lower extremity muscle groups. He reports nocturnal and urgency and is fearful of incontinence.

29 March 2001 -- patient seen by Dr. Duncan, chief of neurology. Additional history revealed blurred vision, slurred speech and difficulty concentrating. On examination, the patient had diffuse cogwheel rigidity with extreme axial rigidity rigidity, decreased in rapid alternating movement on the left upper extremity, abnormal gate with decreased armswing. Patient started on SINEMET because of the unusual presentation of Parkinson's in a relatively young patients, the patient was sent to Walter Reed Army medical Center to be evaluated by Dr. Kevin Cannard, a movement disorder specialist..

8 March 2001 -- returned to Dr. Lee. Patient complaining of deepening depression and frustration with his condition. He could not confirm that he would not harm himself or others so he was transferred to be psychiatric ward for observation. Patient discharge after one day. Started on depression medication. Wife served restraining order.

27 February 2001 -- returned to Dr. Lee. Twenty pound weight loss noted. Conditions deteriorating and personal life suffering. His wife wanted divorced and is taking his three daughters with her back to Arizona. Patient was immediately referred to mental health.

22 November 2000 -- evaluated by neurology. Found to have left upper extremity rusting cover, left upper extremity cogwheel rigidity, left sided increased reflexes compare to his right side, and some deficits of left sided rapid alternating movements. Diagnosed with a kinetic rigidity syndrome, possible early Parkinson's, started on Mirapex. Patient reported no improvement in his symptoms. Instead, he noted increasing side effects from the medication including suspiciousness, obsession, and moodiness.'

13 October 2000 -- evaluated by Dr. Lee. The examination revealed left-sided intensity weakness, left-sided upper extremity intentioned tremor and cogwheeling, with an apparent loss of some cerebellar function. An MRI was normal. Referred to neurology.