Been over a month now diagnosed - Cure Parkinson's

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Been over a month now diagnosed

Billynh profile image
11 Replies

So I've had just over a month of knowing I have parkinsons at age 44 I started taking a half a pill of carbidopa-levodopa and now I'm at 3 a day and my symptoms seem to be getting better as long as I stay stress free I do ok but stress Is a major trigger for me and my symptoms act up big time so I try to avoid stressful situations now !! Hugs from NH

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Billynh profile image
Billynh
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11 Replies
JohnPepper profile image
JohnPepper

Hi Billynh. You have pounced on the worst cause of problems for Pd patients. Stress can cause you to go downhill very quickly. I was diagnosed 22 years ago, when I was head of a large company of which I was the President. My neurologist said to me that if I were able to give up my job, I would be a lot better off. I did give up my job, at great expense, but very soon afterwards, not only as a result of giving up my job, I started to turn my health around. We can all learn to manage our stress levels. First we have to work out what is giving us harmful stress. This often comes from family, both parents and children. If that is causing you stress then talk to the guilty party or parties and explain what it is doing to your health. Explain to them that if the stress continues, your health will deteriorate at a faster pace than would otherwise be the case. Ask the guilty party, if making you get worse helps their case? Ask yourself the same question. If one of your children is dependent upon you for financial support, the best way of encouraging that person to not need to do anything about it is to continue giving that support. Only they can solve that type of problem, not you. You get the message. Whatever causes you stress, get used to dealing with it and getting rid of it. If you don't it will get rid of you!

Good luck

John

froggatt55 profile image
froggatt55

Stress is VERY bad for PwP - it not only makes you feel awful but the adrenaline you create "eats up" your Dopamine (a very lay description).

Exercise is a key activity for PwP and you should do a variety of routines to maximise the benefit and enjoyment

On the drug front I repeat I am a lay person but 6 years ago I added Azilect to my Amantadine and Sinemet 25/100 and it changed my life - it made everything work and still does. I believe - as do many PwP - that it is neuro-protective.

I am half way though my 11th year since diagnosis and am till fit and active

Good luck and stay positive

windwsprer profile image
windwsprer in reply to froggatt55

Thanks for the mention of Azilect - I'll find out what that is. I'm on the other two you mentioned and doing well except some days I'm very uncoordinated, others fine. Diagnosed 7 years ago. Be well and happy Bob.

froggatt55 profile image
froggatt55 in reply to windwsprer

Good luck with your research into Azilect windwsprer. If you decide to take it, I'd be very interested in the outcome. Stay happy

CheriH profile image
CheriH

Hi Billynh, I have found that when I do not get my proper rest or I am under stress, whether physically or emotionally, that my PD worsens. My best advice is to educate yourself about the disease. I searched the internet to find ways to increase dopamine production naturally. I hope you don't mind me sharing

Exercise is key. Not only does exercise keep the body in motion, it stimulates dopamine production and uptake in your brain. Try 30 to 60 minutes of walking, swimming, jogging, or some type of physical activity that you enjoy. If I slack off of my exercise routine, my PD worsens.

In order to make dopamine, your body needs tyrosine. Eat foods rich in tyrosine--Almonds, avocados, bananas, low-fat dairy, meat and poulty, lima beans, sesame and pumpkin seeds may all help your body to produce more dopamine, Phenylalanine is another precursor to tyrosine. It can be found in soy products, fish, dairy, and meats.

I don't proclaim to know everything about PD. I was diagnosed 3 years ago and am still in the learning stage. In spite of all, sometimes the PD has to join the party; but it makes me feel better knowing that I am doing all that I can to fight it and not give in. Never give up! I have days that I struggle; but I am fighting the fight.

I learned about the clinical side of PD from the Parkinson's Foundation website; but I learned about the humanistic side of PD from this website. You are at the right place! Welcome, and I wish the best to you!

windwsprer profile image
windwsprer in reply to CheriH

Good for you. I'm just getting back into an exercise routine. (Have lost 10 pounds so there is less weight to hit the doorways, cabinets, floor, etc. I think I'm on to something here) and also hooray for this website! Oh, dear. There might be a downside - less padding. Oh, well I'm going for less weight anyway. I feel so much better already.

quirkyme profile image
quirkyme

It's a real 'hit' to us when that diagnosis comes. When my husband was diagnosed (2007) it was a hard time, with coping and realizing how life-altering it would/could be. All I can say is to do what you are doing here, connecting to others who know what you are going through. Deal with any depression that come up (and usually does: a diagnosis like this is traumatic and you grieve the loss of the life you expected to live, so trauma depression and grief depression).

But I'm here to tell you that you and your loved ones can learn to live and live well despite PD. It's so much work and effort and struggle but hang in there. We now know how to manage his disease, try to keep him on a plateau, and if problems arise, to try to get back onto the 'baseline' he's on. It's tough that you are young onset so I'll let others talk to you about that, but find others like you.

My husband just went on carbidopa/levadopa and has had an excellent result. Probably should have been on it sooner but we can't second guess ourselves now. It's working and he's more in charge of his life and functioning better. What a relief for both of us.

I think what you say a about stress is important and so we try things like yoga, massage (to relax tight muscles) mindfulness meditation, tai chi, etc.). Find a PD support group; they can be very helpful. Read and study but always with critical mindset. Good luck.

powerfemale profile image
powerfemale

Hi, I was diagnosed last year...it's a shock....there is so much information a lot of it is worse case scenario...and not much for those newly diagnosed. what is hopeful is everyone is different.....feel how u feel for now it took me months I didn't tell everyone because i didn't want to deal with how they felt..i cried and shook a bit to get rid of fears, we can have good lives even with P, maybe different lives, but good. Parkinsons UK is brilliant they have nurses u can call to speak to. U Don't say where u live but the US Has its own associations who may offer similar. You r not alone stay close with those around u. I refused med's for about 9 months but really saw difference when I started...find a neuro u can trust and aim to expand your life and horizons.

windwsprer profile image
windwsprer

Everyone IS different. I'm 'supposed' to be progressing rapidly. I doubt that most people I interact with could even tell I have PK 7 years post diagnosis. I do tire more easily now and plan activities after a couple doses of Sinemet under my belt. I think you have given yourself excellent advice. Please be happy and after grieving for the life you expected, find happiness in just being you. Your life is still yours.

ecker profile image
ecker

well may encourage you to know i ve had pk 19 years 55 now and am doing ok ,cant say too much as sadly big brother is everywhere and waiting to cut your benefits ,should you be able to get out of a chair and your not a vegetable in an iron lung

ecker profile image
ecker

You re bang on john. i gave up my company retail mnswear .to basically take better care of myself ,but with a huge loss of income ,range rover bllah blah. that was 19 years ago and simply put as close as you can get to lying in a hammock between two palm trees ,having the occasional ice beer only to be interrupted by the masseuse , the better your pk symptons will be.ps john you havent got a brother in texas you look remarkably like john the golf pro 2 doors away

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