Parkinson's

[Tedhpersonal]

I was diagnosed in 2008 at age 65 with onset Parkinson's. I consider myself case manager and aggressively manage. I consider my case mild at this stage confined to left side. Fortunately right handed. I have movement disorder Neurologist for med refills, most provide little help. I have holistic MD who has been great help (insurance does not cover). She discovered mutated gene which cause heavy levels of mercury from old silver teeth fillings. It took two years of weekly chelation treatments to reduce to safe levels. I have personal trainer who incorporates motor & non motor training. I still play tennis 3-4 days weekly. Rigorous exercise is key. I manage my own case very aggressively and maintain pretty normal lifestyle. I also work periodically with Parkinson's nutritionist's. I had stem cell treatments in San Diego which reduced my meds 40%. I also add 1 1/5 tablespoons of Syncolein to hot "caffeinated" tea. Can purchase at Amazon. Many have reversal as it contains mannitol which passes through blood barrier. Just ordered CBD ADDit 300mg. After 8 years I believe my aggressive proactive approach has allowed me to confine to left side only and live active normal lifestyle. Vigorous daily exercise is key.

[christymw]

Welcome!

[laglag]

Welcome! Thanks for sharing all the information. Sounds like you'll be a valuable resource for many.

[enjoysalud]

Hi, thank you for all the information. I am the caretaker for my 53 year old son, diagnosed Aug, 2015, with DatScan. You mentioned you have a neurologist, in addition to holistic MD. What meds has your NEUROLOGIST prescribed that you use, also what dosage? Has it increased/decreased in the past 8 years of your DX? My son was started on Azilect, 12 weeks later no change. C/lovadopa was added, good changes. After 4 months of using both, he has gone 11 days without Azilect......wonderful changes, improvement in cognitive, and posture. Currently only on C/lovadopa. We live in Los Angeles. I gather you live in California (San Diego Stem cell)

[Tedhpersonal in reply to enjoysalud]

Thanks for your note about your 53 yr. old son. Actually I live in St. Louis, MO but I did have a second home in Marnia Del Rey, CA for 21 years because I had business interset there and still have a lot of friends there. I have been on 1.0 mg Azilect since my diagnosis 8 years ago. I requested it because it is widely used in Europe as a "neuron protector" My neurologist did not suggest it and has tried to talk me out of using it. I started out using an agonist called Ropinerole. Terrible side effects daytime doozies and compulsive behaviors. Then was put on carbidiopa/levodopa 25/100. Got off that drug after seizures. I am currently on Sinemet 25/100 8-9 pills daily. I was up to 12-14 daily after my stem cell treatment was able to reduce to 8-9 daily. I don't have much respect for Neurologist they are too narrowly focused on western medicine meaning they treat "symptom" with drugs and when they begin to lose their effectiveness they sell you Deep Brain Stimulation which is implanted into the brain and the electrodes do reduce tremors but does not slow or stop progression. The medications cause oxidation and destroy the neurons. My biggest complaint about Neurologist is they are "negative" their message is you are doomed and all they do is dispense medications. They do not manage your PD, you are responsible. PD is reversible for those who have determination. You must accept the fact that the patient/caregiver is the case manager not the Neurologist. During my 8 yearsI have listened and read about the breakthroughs just around the corner. There are none. Michael J Fox started his foundation with the goal of finding a cure by age 50. He is 54 and getting serious dementia. Vigorous exercise, nutrtrition and positive mental attitude are critical! Most patients have suffered trauma sometime in their life - mine was abusive alcoholic dad, it could be a fall, war, etc. Most have been exposed to toxins, pesticides, agent orange, mine was Mercury from 1950's silver fillings, most have mutated genes that leak toxins into the brain. I still have mutated gene but went weekly for 2 years for chelation to reduce mercury. This is a complicated disease that you have to be proactive in fighting or you will get depression and give up. There is a weekly radio podcast "Parkisons Recovery" hosted by Robert Rogers PhD - excellent alternatives. There are books, YouTube videos, support groups, even boot camps. You must constantly work the motor& non motor functions to stay healthy. Keep the immune system healthy. I don't mean to seem overwhelming but there are many ways to fight back my real message you have to seek them out they won't come from your doctors. If you want to discuss you can call me 314-541-5753 I'm Ted.

[akgirlsrock in reply to Tedhpersonal]

Hi, would like to hear more of how you're doing, also more about manitol. I'm only using amino acids for 4 years now. I just stared the complete Amino's from Dr. Hinzs amino acid therapy. Results take 3-9 months. PD only on left side. Best wishes

[glenandgerry in reply to akgirlsrock]

akgirlsrock, isn't the amino acid therapy very expensive? How much do you spend each month? Would love my husband to try it but (if it works) don't think we could sustain the cost.

[christymw in reply to Tedhpersonal]

It sounds as though your current approach now works well for you. You advocate for responsible self care and acknowledge the importance of maintaining a positive attitude--which I agree is essential for everyone and critical for pwp. However, I do not agree that PD is reversible as yet-regardless of the individual's determination.

[enjoysalud in reply to Tedhpersonal]

Thank you for your response.  I am very familiar with Marina Del Rey, graduated from Venice High...around the corner.  Azilect, his first med, was started by my son at my urging. I too had read about it's wonderful attributes, but as already mentioned, not for my son .  He has been off it 13 days. He continues to improve, especially cognitively.  His neurologist, with future evaluation/discussion, is open to reinstating it.    I too did much research before he started on meds.  As most of us, I continue to research .  My son was DX early 2015 and rejected the diagnosis, paid out of pocket for an eval from UCLA. The DX was iffy, finally Aug of 2015 he underwent the DatScan.  The confirmed PD results threw him for a loop.  Acceptance has finally crept in.  I find the role I choose as "caretaker" a very different path than what I would choose if I had PD.  Some of his decisions and non-decisions I don't think I would have chosen, however, It is his life and he gets to make the choices.  We maintain different households which has both positive and negative assets. At his request I go with him to all his appointments (I do the driving....helpful with his double vision), take notes, and give input.  I just finished Jon Palfreman's BRAIN STORMS.  Palfreman is an excellent writer and also has PD.  If you have not read it I recommend it.  It gives a good historical perspective of PD.  It has made me a bit more kinder to neurologists, researchers, and the pharmaceutical industry (they are not big on my list)......especially chapter 13, Damage Assessment.  I found your sharing helpful.  I had not read about trauma, but have read that PD seems to visit over-achievers (if not highly educated than definitely successes as viewed by society).   Thank you for your phone number. Some future date I may personally reach out. For now, I think the group sharing is helpful to us all.  I scan the topic, make a decision to delete or print out the sharing. Again, thank you for yours.  I look forward to more. I am interested in the stem cell treatment, where, how, etc.         

[Hikoi in reply to Tedhpersonal]

I think your story highlights the difficulty comparing PD. because I have been diagnosed over 8 years still one sided and on about 8 sinimet a day but have never had any of the other treatments - chelation, stem cells, supplements or Azilect.  Had silver fillings, no head injury, no history of trauma.   As is said when you see one person with PD you've seen one person with PD. But then I think PD is not just one condition but a multitude as we are finding with gene research and each will require slightly deferent treatment approaches.  We already know that there are different rates of progress according to the type you have.  

[grower]

Hi and welcome, interesting to hear your story. I'm a bit confused with your meds though, you say you were put on carbidiopa/levodopa 25/100 and then got off that drug and are currently on Sinemet 25/100 8-9 pills daily. C/L is sinemet. There's another vesion of C/l called Madopar, I wonder if that was what you were on. Either way they are both 25/100 the same thing.

[Moodyblue in reply to grower]

Madopar is not the same as Sinemet; it is not Carbidopa + L-DOPA but is L-DOPA + Benserazide.

[grower in reply to Moodyblue]

Huh, I see you are right, I guess when my dr explained it to me he was being a bit simplistic. thank you.

[glenandgerry in reply to Moodyblue]

Thanks for this Moodyblue, my husband has Parkinson's and we were not aware of this difference between Sinemet and Madopar......always learning!

[whack-a-mole]

Hey Ted, I've never seen much consensus on the best diet for Parkinson's. Please give a brief outline of that recommended by your "Parkinson's Nutritionist".

[Beckey]

All the alternatives sound intriguing but are astronomically expensive. It's all I can do to keep buying the nutritional supplements I take -- Calcium/magnesium, B complex, iron (for restless leg), D3.

[stevie3 in reply to Beckey]

Tell me about it! I got the list from 'fighting parkinsons' recently and after research, selected those I think look helpful and trotted off to the health food store. I paid quite a lot and came home clutching my carrier bag. Being an organised woman, I got out my pill organiser and sorted them into the recommended doses for each day. I think my husband was hugely entertained by the expression on my face as I realised my seemingly large supply would last about a fortnight! So the list is being edited again. However, calcium, emergen C and Inosine are top of the list. What with the camphor oil, the coconut oil, the gym membership, oh, and the prescriptions, this Parkinson's is an expensive condition!