I have recently been diagnosed with Parkinson's and I am 39 years old. Is there anybody on here that has been diagnosed early in life? Has it progressed slowly? I want to try and make it without meds except a MAO inhibitor.
Early Onset Parkinsons: I have recently... - Cure Parkinson's
Early Onset Parkinsons
Written by
aclarkson
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40 Replies
•
Welcome aclarkson
Sorry i am going to use your post to ask a question of ever one.
WHY ARE THERE SO MANY PEOPLE WHO DO NOT WANT TO USE MEDS.
I can not wrap my head around this. Please give me one logical answer.
I agree with Bailey_Texas.
Why wouldn't you want to take something that makes you feel better?
I was diagnosed at 39 as well and have been on medicine from the time I believed my diagnosis at 40 years old.
I also believe in taking the minimum amount of medicine required to get symptomatic relief. So if only an MAO inhibitor is required so be it.
Nothing can change the fact that PD is progressive and no matter which medicine(s) you decide to take, they will be most effective and predictable early in the disease's progression. Something to consider.
We have to have something to look forward too!
• in reply toBailey_Texas
Is it a med side effect or pd that you find it necessary to add yet another med to your treatment?
Meds not necessary until needed to treat worsening symptoms. Taken too early may be a problem, so says research university in California. (I posted this info earlier)
Maybe I do not have pd! I was dx in 2012. My neuro assures me that I am with pd.
The only really bothersome symptom is the tremor. The remaining symptoms are minor irritants. (no falling, shuffling, major gait issues).
Maybe I do not have pd as any meds I have taken, still tremor. I am on Neupro patch currently.
• in reply to
Parkinson's: Latest From the Experts
“…leading medical experts at UC San Francisco's renowned Parkinson's Disease Clinic and Research Center share their insights and expertise…”
25:55 video time
“You cannot clearly make the diagnosis by simply giving the patient a trial of medication. Giving a trial of medication too early in the course of the disease has the potential of doing harm.”
28:16
“They may have been taking a particular medication that it self induces Parkinsonism and unless that is recognized the disorder will continue and lead to increasing disability.”
Because their poison! They create other problems ..adding to what u already have
You are misinformed i am 11 years with pd (all symptoms but tremor) take C/L 6 times a day and one dose of requip . Function better than my kids. I am 63 as of today.
I ask for a logical answer.
C/l i read does not work after awhile and causes dykinesia
This idea has been shown to be in error. Late–stage patients in Ghana who did not have access to levodopa were just as vulnerable to dyskinesias as patients who had been taking levodopa for a long time. See here: academic.oup.com/brain/arti...
The reason for this is early stage patients have enough dopamine producing neurons left to be able to self-regulate the overall level of dopamine in the brain. When these neurons are gone that ability is lost and dyskinesias can easily arise when levodopa is taken.
I have known 4 people who were receiving therapy known as the Hinz protocols and the people were taking 30 grams of 40% levodopa concentration per day, thus consuming 11.2 grams of levodopa/day
None of them developed dyskinesias but had rough muscle cramps and nausea. The second article has participants taking that quantity of MP per day.
The first study has chemically induced parkinsonism on non-human primates then treated with standard Sinemet, mucuma pruriens only or mucuna pruriens plus carbidopa. Only the sinemet treated animals had substantia nigra reticulata bursting firing patterns - dyskinesia, while pure mucuna pruriens and MP + levodopa therapies did not.
hindawi.com/journals/ecam/2...
ncbi.nlm.nih.gov/pmc/articl...
THANK YOU!
Because in the long run they affect the gut in a negative way which affects everything else. Watch videos put out by Dr. John Bergman! He has some on Parkinson's. He has a fun sense of humor.
Hello Bailey_Texas, I’ve been thinking about your question quite a bit, and have tried to make a list of my reasons for not using meds (yet).
I know that some of them are pretty irrational but I want to be honest about this.
So, here goes:
I do, of course, have my challenges (handwriting, brushing the teeth of a 4 year old who’s trying to wriggle away, cutting pizza, a sometimes visible tremor in my right hand and arm – just to name a few) however, there are still so many things I can do (ride my bike to work on snow-covered streets, climb a mountain, jump on the trampoline and touch my toes 
make pottery) that i don’t really feel the need to use meds (yet).
My most bothersome symptoms are feeling tired most of the time and tremor. From what I’ve read both of them seem to respond poorly to medication.
I don’t have balance issues that would put me at risk of falls.
There is evidence that people with early onset PD (I was 41 at the time of diagnosis) are more likely to develop treatment-related side effects such as dyskinesia and dystonia earlier. (It’s not just disease duration!) Being female is an extra risk factor.
Given that all available meds stop being effective at some point and that with young onset you have to live with PD for many years, it is only natural to look for alternatives.
I believe that not using meds forces the brain to find new pathways. Of course you need to stay active for that to happen.
Around the time of my diagnosis I found information online that said meds are bad. Now I know this is stupid, but I can’t get the concept out of my head 100%.
There is this tiny voice in my head (No, I don’t have any additional neurotransmitter problems ) that keeps telling me it is possible to beat PD…. I know, it's probably just denial.
Somehow, as long as you’re not using meds you can pretend you’re not really ill.
Not using meds motivates me to stay active and stick with my alternative plan. I know that doing nothing is not an option.
OK, that's it. Hope I haven't bored you!
Thanks for your reply. You put a lot of thought into it,
I recently read "Lucky Man: A Memoir" by Michael J. Fox which describes his diagnosis and experience as a young man with Parkinson's.
one thing you most do is exercise and maintain as much flexibility, coordination, balance. We all experience a gradual decline some quicker than others but if you are healthy you will always experience better wellbeing. I also find my faith in God to be big in dealing with hardship. I paint local landscapes both town and country this is good for the mind it keeps it occupied otherwise it can take down. Last don't get all conscious about PK it is what it is, you will find it can be difficult but you treat it as a change in life that you can cope with and keep doing all you can and you will manage better.
Ricky
A tough break at your age.
Look into NAC (which I think is fantastic) and mannitol which is being unofficially trialled.
I was diagnosed at 52 a year ago and haven't got any worse really, touch wood. I take NAC and azilect.
Hi aclarkson. My first symptoms started in 1963, at the age of 29. More symptoms continued to appear over the next 29 years, for which I was being medicated. Only in 1992, when I started to shuffle did my doctor send me to a neurologist, who immediately diagnosed Pd, at the age of 58. You may not know that you have to be 70% or 80% down the track before Pd can be diagnosed.
Initially I was prescribed sinemet and symmetrel but after 2 years, in 1994, I was taken off those two and put onto selegiline, an MAO-b inhibitor which I took for the next 8 years, without any other Pd medication. Then I was able to come off the selegiline in 2002 and have been off any Pd medication ever since. What else I did in 1994 was to stop going to the gym and start doing FAST WALKING, which I still do to this very day. I also gave up my job and got rid of many other causes of high level stress. I also took a positive attitude towards dealing with Pd.
If you would like to learn much more, go to my website reverseparkinsons.net and write to me. I will answer all your questions, free of charge.
Thirty-nine is a tough break, I was forty-nine years-old when I was diagnosed. In my experience of fellow sufferers, when you are younger it seems that your physical ability helps to combat the disease. Older people do seem to go downhill faster, however this could be down to many other factors. I have been diagnosed 11yrs and 3months, life is not easy, but I get on with it. If your condition starts to deteriorate, then the medication route is inevitable, I'm afraid.
Thank you, are you still able to work?
I gave up my regular job, IT Manager, to pursue my music. I guess I still work, but I wouldn't be able to do a regular job. I would have been able to for around eight years.
I was diagnosed at age 36. It progress quickly during the first 5 or 6 years. Then it slow down. They put me on Requip at first. Then they added Azilect, . Within 3 years, I had to start Carpa/D.
hello aclarkson, i was diagnosed almost 3 years ago at age 41. i am still without meds. the disease is progressing quite slowly, and i don't feel the need to take any meds yet. i've read several times that early onset pd tends to progress at a slower rate.
I have read the same thing many times, progression is slower the younger you are so if there's any good news I guess that's it. Also, keep in mind progression varies individual to individual. If your main symptom is tremor you also stand a v good chance of progressing more slowly.
I was dx @ 48, twelve short years ago at Mayo Clinic in Rochester Mn. currently reasonably controlled with DBS and sinemet.
I am 42 and was diagnosed last spring. I am on azilect and am taking part in the inosine trial. I'd you are in the US, take a look at the Michael J Fox trial finder website and see what's going on near you. Since being diagnosed, things have been less mysterious. I am dragging my right foot because of Parkinson's. Now I consciously try not to do that. Being diagnosed early helps in trying to correct these things. I've always been a cerebral person. Maybe it's because I am forced to be.
I consider joining the inosine trial. How's it going for you? Have you seen any improvement since taking inosine?
I really don't know. It's double blind, and I don't know if I am taking inosine or a placebo. My updrs scores didn't change much in the first two months of the trial. I go for a six month visit in March. I'll let you know if they see a difference. I imagine it allows me to work out daily due to it clearing out lactic acid buildup, but that's just fun mind games.
I was diagnosed just before I turned 45. I have been on Sinemet since my diagnosis. I exercise regularly. I don't think I would be able to work without the meds. I try to take as little as possible to manage the troublesome symptoms like tremor, shuffling feet, stiffness and speach issues. With the meds, I normally only have a minor tremor.
If I were you, I would definitely start to detox - Global Healing is a good place to start, first a colon cleanse with their oxy powder that digs deep into the colon walls - it may create diarrhea but it's not normal diarrhea - it's pulling out toxins. Dr. Ed Group has a lot of good videos. Getting chiropractic will reset your nervous system which affects everything else - joints, bones, tissues, ligaments etc. Check out Dr. John Bergman also. Don't get vaccinated anymore!!!! Eating a whole foods diet helps a lot with anything - going off gluten, most grains, pasteurized dairy and sugar has helped me to heal in many areas. I don't have Parkinson's but my sister and her husband were diagnosed 6 mo. apart - they got all the flu shots.
Was it the first time they had flu shots?
They had numerous flu shots. We are exposed to a lot of chemicals, but lots can be removed with chlorella or spirulina, iodine, zeolite, juicing along with organic (not dark roasted) coffee enemas (lots of good videos on line). I'm sure Parkinson's is a difficult one to tackle but I'll bet it can be kept under control. If you can afford bigger doses of CBD oil (or if you have access to medical marijuana) which is legal in all states until....who knows when. CBD oil works better when mixed with MCT oil or just coconut oil and/or turmeric. My sister takes Ceylon cinnamon every day - she thinks it helps her anxiety. God has given us so many ways to heal, so don't give up. My sister had a lot of emotional distress (who hasn't? ha) along with anger (doesn't help the mind, plus she had a ton of candida - most people have intestinal impermeability and often don't know it). I wish you well, my heart goes out to you. Thanks for asking me the question, as sometimes I'm reticent to tell people what to do but I'm not the harbinger of all this health advice - I've been privileged to have enough time to study health hoping I can help anyone. By the way my sister does a lot of yoga to prevent stiffness.
I'm sorry! I'm 55 and I thought that was young. I was diagnosed last summer and my medication has stopped the tremor now.I do drag my foot sometimes but I'm able to still work and lead a normal life
I was diagnosed at 55 which my doctor said was young but since I found this site I know it's not. There's loads of great information here - do your research and work out what's best for you. There are different opinions about medication here but there does seem to be consensus that vigorous exercise is really beneficial. I do the PD warrior programme (google it) plus I go to the gym. I take NAC and Inosine, I use mucunna Puriens but I also take aziclet and 6mg ropinirole. I'm 59 and doing ok. Most people don't know I have PD - I still work, I'm still able to drive safely, I do everything I possibly can to stay well. I credit this site with giving me the information I need to do that.
Why not meds? because you will be taking them the rest of your life. I was diagnosed at 37 and did not take meds for 3 years. at 49 I was taking 26 pills a day at age 50 I had DBS now taking ''only'' 11 a day. My advice - moke your body as much as possible, as varried as possible. from yoga to boxing, LSVT, tai chi, cykling, hiking etc.
Hi I was diagnosed at 33. The symptoms started when I was 31. I think you should take meds. There are many meds to choose from. And you don't have to take a very strong med. You and your doctor can choose the right meds. for you. Some of these meds are thought to slow the progression of the disease. My disease didn't progress that quickly. I had DBS surgery when I was 43. It was the best thing I ever did. It, along with the meds, control my disease very well.
Please dont start Levodopa. It will deteriorate your condition. Even though it gives temporary relief, in long run it causes psychological problems, depressions, mood changes and much more side effects. So levodopa is more dangerous than PD
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