Archive for September, 2009
Post 13
Posted by mneshati in Succeeding After The Parkinsons Diagnosis, Uncategorized on September 22, 2009
Currently Listening to: Don’t Give Up Peter Gabriel 2-04 Don’t Give Up
Just completed three days showing the finished Chevelle at the annual Route 66 Rendezvous, a four day event showcasing older cars, and celebrating the heritage of Route 66. Exhausted but Exhilarated. My car got lots of great comments and I think about 5000 pictures got taken.
I am grateful to a lot of people without whose friendship, hard work and contributions this car would not have been possible. First and foremost to my Amazing wife Kim for her patience and support over many a long weekend over the last two years. My neighbor Chris who has come over weekend after weekend and devoted hundreds of hours helping me on this car. Welding in particular was a skill I had not yet taught myself to do left handed and the right hand….. well lets just say the results wouldn’t have been trust worthy. Karl Eakin and his company Panel Tech for his help on the body, frame and paint, and Little Jay’s Upholstery, there are many many others and I have and will continue to thank them personally.
I want to also thank my friends who came down and supported me through the grueling 100 plus degree days standing in the sun. Our IT Manager at work, and a friend the rest of the time, Keith Butler, our Controller at work and my friend the rest of the time Charles Smith and his lovely wife Tracy, my colleague at work and friend the rest of the time,Chuck Barnes and his son Brian who spent the better part of Saturday keeping me company as did my wife Kim and an old friend Don Prather. On Sunday the president of our company, a man I am proud to call a friend the rest of the time Dale Carson came down and kept me company for several hours. All of these wonderful people took time out of their busy lives and came buy and spent time keeping me company during the show and I am forever grateful to them for their support this weekend and their friendship, support and presence in my life the rest of the time.
The restoration of this 1966 car over the last 2 1/2 years has been a remarkable journey and a life lesson for me helping reinforce in my mind that all things are possible and doable with the right outlook and desire, and the will to work around, through and over obstacles rather than be defeated by them. A huge lesson and a reminder was that like almost everything in life I didn’t do it alone, I had lots and lots of help and support, like we have through out our lives, from parents and from our siblings, from school teachers, from friends and neighbors, collegues at work, bosses and the people who have been mentors to us, even when we didn’t know it, and of course from Up Above. I hope that I have always remembered to thank all those who have been there for me. I urge all of you to think about all of those special people in you life too, and take the time to thank them. Life is GREAT!
Post 12
Posted by mneshati in Succeeding After The Parkinsons Diagnosis, Uncategorized on September 17, 2009
Currently Listening To :01 Beginnings I am a great believer in luck… and I find the harder I work the luckier I get! I was in Chicago at a Bus conference called BusCon, I was honored by being asked to moderate one panel and later in the morning be the host that introduced another session’s speakers. I noticed that my right hand was tremoring a little more than normal, not wanting the audience to think I was nervous, (OK so I was) I simply kept my right hand in subtle motion. Fortunately the way Parkinson’s effects me, and I am told this is normal, is that it is an “at rest” tremor so if you put the muscles in motion the tremor essentially stops. Little gestures with my right hand looked perfectly normal during a speech, and to the audience I didn’t look nervous or ill at ease. Solutions are what you see when you take your mind off of the obstacles!
More importantly in this post I wanted to share how touched and honored I felt for all of my many industry friends and colleagues that I ran into who expressed such great concern and caring about my well being. It is truly humbling to be reminded of the people who care about me and who expressed their concern. I reminded them as I remind anyone who reads this post that I am fine and couldn’t be more grateful for your concern and caring.
As the day progressed and I was able to connect with so many friends I started thinking back to the life I have lead, I thought about my beautiful, amazing, loving, caring wife Kim without whose love and support, none of the rest of my life would be possible, and that got me thinking about my beautiful and loving children, now adults, and my amazing grand kids, and the friends and family that love and care about me despite the flaws and pimples and warts, I thought about the loved ones that aren’t with us anymore, some of them taken from us so young, and I was reminded, as I am everyday, what a rich and charmed life I have led, and how I truly am one of the luckiest people in the world.
As a new feature, Humor me, I am going to add a “Currently Listening To” song with each post. Music is important in any society and as I have advocated for earlier, has healing and therapeutic qualities, it is a huge part of my life. Click on the link if you feel like, who knows you might discover a song you really like, or reconnect with a song, artist or band you once loved.
So I want to end this blog appropriately with a huge THANK YOU and I LOVE YOU to all my friends, family, and colleagues for being in my life and caring about me, I am inspired every day to lead my life to it fullest because of all of you!
Post 11
Posted by mneshati in Notable comments/Responses, Succeeding After The Parkinsons Diagnosis on September 16, 2009
I have been so honored and grateful that so many have started following my blog. I received a comment from someone in Sweden who has an amazing record of having put his Parkinsons remission and maybe even pushed it back. Rather than paraphrase or edit his response I have posted it below. While I haven’t finished digesting it and have tons of questions I still want to ask him, I post it here for two reasons. Any one out there with Parkinsons that might benefit from his thoughts, and everyone out there with or without Parkinsons can benefit from his core message, a positive attitude and out look. An “I can whip this” versus, “I am whipped” attitude.
Because I don’t want this site to become a platform for advertising cures, miracles or a particular treatment course, or to take the place of sound medical advice I do have to state this disclaimer: The views contained in the following post are strictly those of the author. I, Macy Neshati, nor the site SucceedingwithParkinsons.com do not endorse, recommend or in any other way promote the thoughts or opinions of the author. Nothing in this blog, this website or this blog are intended to take the place of good medical advice from your own doctor. You should not discontinue any medication you may be taking or take any other action without first consulting your physician. This post is only to provide information and if you are interested in it, please contact the author and do your own research. There I hope that takes care of the legal aspects of publishing someone elses opinions.
Again, my message, don’t see the obstacles, stay focused on the goal, Each day is a GIFT, Make it a GREAT one.
Macy
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To contact the author of the following response to m site contact: Tiger World at consult_3@hotmail.com
Tiger World wrote: I am a 59 years old dentist, who had Parkinson’s disease slowly gnawing inside me for over 30 years. I finished dentistry 1997. My first symptoms I had right after 20 years of age in the form of RLS, Restless Legs Syndrom. Around 25, I had abnormal pain in the legs after football games. Then came writer’s cramp at the lectures at dental school. The years between 30 -40 were one long downhill in physical terms, when my legs finally was unable to jog, and resulted in a year’s sick leave, with no diagnosis could be made.
My father died of Parkinson’s Disease 25 years after their diagnosis. Therefore, PD was the first diagnose that I denied. Yet I had 4-5 ailments at the same age as my father had suffered these earlier in his life. During the year I was sick andweak all the time, until the last of the amalgam was cleaned away from my mouth. Then I experienced a turnaround in healthstate, anda month later I was at it again in my dentist-practice. This made me a moderate opponent of amalgam fillings and I developed my own clean-up method for sensitive patients, to avoid adverse effects of amalgam removal.
After being stiff in lower part of right arm since 1988, I began to shake in the right arm in summer 2007. PD I still denied. An inguinal hernia forced me to the doctor in 2008, when the diagnosis was established by a specialist after medicine helped. MabyI partially still deny the diagnosis in that I refuse to believe that PD is an incurable disease. But I have my three best reasons.1 .. First, I am an optimist.2 .. Second, I witnessed with my own eyes how my father with his 22 years old symptoms was completely recovered 15 minutes after I treated him with the same stabilization method that I used on sensitive dental patients. He was symptom-free the rest of the day, but was sick again the next day after. But I saw that the PD can be tamed.
3 .. Third, I have by a comprehensive treatment of both body and soul, managed to reverse the trend of my own Parkinson’s and become free from more than 40 symptoms from Christmas 2008 to September 2009, and as shown here:
Symptoms disappeared while dopamine agonists was reduced from 2 tablets to 1 tablet per day and no administration of L-dopa occurred. Prescription say I should take 6 tablets per day.
1. Cramp in the ball of foot …gone…… 2.Loose balance while raising up from sitting,, not bloodpressure-related imbalance …also gone…… 3.Stiffness in leg muscles and Achilles tendon …soft now…… 4 stiffness in the pelvic muscles …soft now…… 5.Stiffness in the neck muscles, which caused a lot of insomnia. The head rose up from the pillow like a cobra and floated freely in the air until I perceived the situation and took command over the muscles anddropped my head,,, every five minutes,,til around 04;30 am, I finally fell asleep.
6th Stiffness in the muscles of temples,,, one of the most underestimated problems … 7. Stiffness in the right arm that shakes,,, has its original stiffness since 1988, during the spring, the forearm stiffness was reduced by 60-70% … 8. Stiffness in the facial muscles,,, softer look … 9. Weak muscles in arms,,,, 3 years ago I felt my arms too weak to perform a shave,,, my legs felt like the letter j …
10th Over Variable brushing teeth,,, after 2-3 strokes hyper reflexes took over and drove the toothbrush in a ferocious pace, in too long strokes,,, today I controll the toothbrush 100% and it feels firmer as time goes … 11. Breast spine and neck vertebrae in the wrong position,,, about 8 vertebrae have been adjusted by the chiropractor …
12th Cramp behind the sternum bone in chest …is gone… 13. Sudden drop in blood pressure with weakness throughout the body,, last year with the frequency of 2-3 in the week,,,, has not occurred this year…
14th Atherosclerosis in the head arteries,,, in early March to the severity measured 5 respectively 6, in different sites and across the head,,, in mid-May reduced to a more lenient 3 respectively 4 and standard grade 2 in 5 different locations.The result spurred me to put further action against arteriosclerosis because I read in Fass that my form of Parkinson’s is due to many smaller infarcts in the brain, with new health benefits in June-July as a result.
15th Dementia trends have improved withpurer blood vessels, in particular the memory of where I put things have improved … 16. The depression has lifted for good,,, and is the symptomloss I put most value in. I have had many happy days in our spring and summer when I was almost grateful that I had Parkinson’s and thus made radical changes in my lifestyle. Euphoria usually resolve in 10 minutes. My longest euphoriaperiod lasted 6 days, and with big astonishment I could only conclude that it was the result from a slowly progressive healing process. Or els it would not last for 6 days.
17th Poor assimilation,,, improved nutrition and a more even distribution of nutrients over the day … 18. Poor elimination of wasteproducts,,, has been improved by stimulating the lymphatic system and liver, stinking body odor has disappeared … 19. Constipation,,, 4 bowelmovements per week has risen to 15-20, which reduces the load on the nerves by the phenomenon of self-poisoning, autointoxikation … 20. Incontinence,,, my urgency did not come slowly and increasing last winter. They came like a lightning strike with a force that made it impossible to keep tight. Now I’m tight against the far milder tones.
21st Poor energy metabolism in muscle cells, previously these quickly became fatigued. Replacing the tires on the car was a 2-day project. Now I can manage it in an hour …
22nd Disorder in the autonomic nervous system,,, in a half year, I have been training the balance and cooperation between the catalyst sympathetic and the calming parasympathetic …
23rd Low levels of neurotransmitters monoamines,,, has generally increased, including dopamine and serotonine, is a conclusion of so many symptoms have improved … 24. Dizziness when changing walking direction,,, in 1991, I interrupt a dance course in bug due to dizziness. If I feel something today, it’s more like a memory of how it felt before. The body remembers and hesitates in fear of the moment, but there is no true vertigo.
25th Daily swallowing incidents,,, has declined 95%. In my own treatment-sessions in the spring, I was able over a period of 3 weeks to feel how a spasm came loose from Cardia and walked in 8 seconds up to the larynx, where it got stuck like a cramp, which slowly faded away in 1-2 minutes … 26. Low bite,,,, have been raised permanently 7 mm, by new crowns from a dentist,,, its strong effect on the nervous system I know about, because I myself have treated 500 patients with a different variation of bite-raising …
27th Social isolation,,, second quarter of this year I have increased the visits to my home by 400%, from a low level … 28. Stumbling over the threshold, wiring and vacuum cleaners,,, has returned to the level of healthy individuals … 29. The knees bend automatically,,,, began in 1990, has ceased … 30. Micro Scripture was last winter down at the typewriter size,,,, have become larger and less problematic with time … 31. Fumbling, nervous and stare hands,,,,, such as peeling potatoes and similar tasks goes well, without feeling stress haunts the body … 32 Swelling of the feet at the computer work, could give the 1 cm thick edema in the foot,,, completely gone this year …
33rd Highfrequencytremor,,, underline the text in freehand gave serrated lines with 1 mm between the tops,,, I can not carry out serrated lines any longer, because tremor is gone …
34th Shaking-power has been lowered ,,,, if someone held my moving fingers before, so instead my hand began to shake ,,if he held my hand, my arm began to shake,, held arm, the body began to shake, the latter is not present anymore. Shaking-power is not enough to move the body.
At June 12, I had so few symptoms left, I found it difficult to determine how much effect I got from my treatment . That was why I stopped completely with medication.The day after I was on 4 hours of dance. Tired and just 24 hours without medication, I had no problem falling asleep. But the second day RLS came back as a letter in the mail. 0 seconds of sleep that night with the kicking leg. The next night I fell asleep without problem because of the sleep deprivation and of pure exhaustion. After that I suffered RLS every night .I had ample opportunity to test what was best treatment without drug intervention.
After 3-4 nights, I found a method to have good effect. RLS disappeared and did not return during the remaining 9 days without medication. The legs, however, became increasingly weak and I became convinced that healing will be safer and more efficient by using low dose of dopamine agonists.
Time after midsummer, the continued increase in health status. First week in July, I was so well and cocky, that I thought I could go back to white bread and other Smith-diet for 3-4 days. The answer came one night in the form of RLS. Somewhat desperate, without sleep at 03:45-am, I preferred the extra hard with two RLS treatments with a half-hour interval. Now, it took a screw properly …
36th Impotence disappeared,,,,, in 2008, I had tried various stimuli without response in the groin. There was a cut between the brains and the groin. However, I took this not so hard because of the depression that made me apathetic. Now,,with the depression already gone, there was additional joy to regain the ability … 37. Rigid movements of the eyes and staring eyes,,,,, disappeared,,, softer look of face … 38. Weak breathing,,, got higher basic level … 39. Insomnia,,,, disappeared, and suddenly I was able to guide the brain into sleep mode when I wanted …
That these four key indicators of health status improved markedly and at the same time, suggests that something fundamental has happened in the region of the hypothalamus.
40th Dry skin on the forehead and eyebrows,,,, has become soft and smooth.
This is what has happened in the first 8 months of 2009. It still goes in the desired direction. 8 months of vanishing symptoms cannot happen without a break in the progression of the disease. I even considder a reversal. It is not an easy game to achieve such results. It´s a half-time job. But the benefits in mental recovery is so pleasureable, that bliss have come to me for first time in life. Thanks to the Parkinsons Disease I can now feel happy in any moment. I can create head-pleasure every day.I hope it works for migraine-sufferers too, because it is exactly the opposite experience.Everyone can heal.
Post 10
Posted by mneshati in Succeeding After The Parkinsons Diagnosis, Uncategorized on September 10, 2009
I had a lot of documents to sign today at work which had me reflecting on the last five years with Parkinsons. The biggest impact the battle has had on me is a gradual loss of dexterity and motor control on my right, (also my dominant) hand. I have sought out mostly quick and easy solutions to this issue. I switched to a left handed mouse, awkward for the first week or two but now I can use it as easy as I used to use a right handed mouse. My writing was going down hill and getting a little difficult so I switched to a very small light note book computer that I take to meetings that might require a lot of note taking, simple solution and actually very powerful as it eliminates the step of transferring written notes to a word doc to share with others. When the meeting is over presto my notes are ready for distribution. I am also slowly teaching my self to write with my left hand.
I guess the point of this post is that working through Parkinsons is like anything else in life, you can get stuck staring at the obstacle or you can focus on the goal, the solutions. If you think positive and look for the solution, they will be there for you. Not always obvious, but they will be there.
A wise man (not me) once said, “Obstacles are what you see when you take your eyes off the goal” Focus on the goal.
Post 8
Posted by mneshati in Succeeding After The Parkinsons Diagnosis, Uncategorized on September 8, 2009
Monday Labor day, and I labored all day on the Chevelle and the great news is that the car is ready for the Route 66 car show starting Sept. 17th, as always I had a lot of help from my buddy Chris. He laid out the templates for the fan shroud I’ve decided I need to increase the engine efficiency. We got the rear window trim on, polished and waxed the chrome and took some fashion shots of the car to complete the album I have been keeping to chronicle the last two years of work on this project. Feeling good, but tired. But I’ll put an hour on the drums before I go to bed tonight. Remember, Life is Grand, and you get out of it what you put into it.
Click on each image if you want to see a larger version and click on that version to see the full size picture
Post seven
Posted by mneshati in Succeeding After The Parkinsons Diagnosis, Uncategorized on September 7, 2009
Went to visit a great man Friday. Jim Ditch retired as Executive Director of Maintenance from Long Beach about a year ago when his cancer came back and he bravely decided that Chemo and the side effects that come with it were not worth it. He chose quality of life not length of life. Jim was larger than life during his career. A knowledgeable man who has many innovations and even a few patents to his name. Jim is responsible for training programs that trained and promoted many capable people who are now maintenance directors or general managers at systems throughout California.
Jim has always been known as kind, generous with his time, and caring and compassinate about others. He was equally known and loved for his sense of humor and warm and generous spirit.
As Jim nears the end of his battle with cancer he still exudes these qualities. When you walk in the door he and his wonderful wife Carolyn immediately want to get you comfortable, and then Jim turns to his guest and wants to know how they are feeling, how they are doing with deep and genuine concern. He delights in the company of his wife and the impending visit of his beloved grand children. Jim’s bravery and undaunted spirit are an inspiration and help put out daily challenges in perspective.
Jim’s life has been and will continue to be a lesson in appreciating the good in life, delighting in your family, growing from the growth of others, helping those around you to succeed, and doing it all with a sense of humor and humility. Thank you Jim for the inspiration and the life lesson.
Post six
Posted by mneshati in Succeeding After The Parkinsons Diagnosis, Uncategorized on September 7, 2009
Finished wiring the starter with the help of a great friend/neighbor. Took the car for a long test drive, starter works great and fires off the car much faster and more dependably than the old starter, fans keep the car cooler longer but still eventually gets hot, need to look at a shroud of some type, car is being detailed, rubbed out and waxed to get ready for the car show, finished up, and cleaned up to meet our sons future in laws. GREAT family, easy to know, easy to talk to and easy to like.
My point in these last two blogs is at 55 and diagnosed with Parkinsons 5 years ago, I put in two 16 hour day working on the car, entertaining guests with no detectable problems. Sure my right hand isn’t as steady as it used to be, I have learned to use my left hand when a steady job needs to be done. All other aches and pains are realistically more to do with the natural aging process. I live each day with a sense of gratitude and treat each day as the gift that it is.
Post five
Posted by mneshati in Succeeding After The Parkinsons Diagnosis on September 7, 2009
Saturday Sept. sixth,worked from 10:00 AM until 10:30 PM without a break on my 1966 Chevelle. Got two new high flow fans installed to double my air flow and worked on installing a new starter. Got the fans installed, got the starter installed, need to get the wires on the starter Sunday and then start cleaning up the car for the route 66 festival and car show in San Bernardino Sept. 17th through the 20th 2009. Some things took me longer to do than it used to but I think as much of that is due to age, (be 55 this Nov.) as anything to do with Parkinsons. Car is looking good.
Post 4
Posted by mneshati in Succeeding After The Parkinsons Diagnosis on September 3, 2009
Music has always been a big part of my life providing inspiration, entertainment, and variety. While I was not particularly talented musically I love listening to all styles and types of music and find it energizing. Recently I got a new drum kit and have started re-learning playing the drums. It is, for me, yet another conquest over Parkinsons. While there are days were the right hand won’t quite follow the brains directions, I deal with that by carrying to the next beat that I can do the fill on and try it again. But the point is I have a blast, I am energized by the session, and I have fun playing along to whatever tune has been stuck in my head that week.
As music continues to be such an important part of my life I want to share with you that the band Chicago has always been my favorite band and their co-founder and probably most prolific songwriter, Robert Lamm has been my favorite singer/songwriter. Through the bands 42 years together Robert has maintained a brilliant solo career and in August 2009 launched an Internet based record label, Blue Infinity Music to help launch new struggling musicians and provide an outlet for Indie music. I support and applaud this effort and urge you to do the same. Go to Blue Infinity Music and check out Robert’s solo work there is even a free download of a great new song “more will be revealed”.
No matter what has gone on in my life I have been uplifted, energized and moved forward by music, it has healing powers! Check it out!
Post 14 Jim Ditch Tribute Page
Posted by mneshati in Notable comments/Responses, Succeeding After The Parkinsons Diagnosis, Uncategorized on September 22, 2009
A Gift of Remembrance for the Ditch Family
Please add your thoughts about what Jim Ditch has meant to you and the Transit Industry, we will build an album to present to Carolyn as a memoir. Scroll down and click on the comment box and add yours. Thanks for helping us give Carolyn and the Ditch family a unique remembrance of Jim .
HELP My email list was not exhaustive, please help spread the word, tell anyone in your organization (or anyone period) about this tribute page and lets get all the responses possible to support Carolyn and the family.
THANKS
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