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loveya1971

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loveya1971    0

Hello i am 46 and was diagnosed in May 2017. My doctor has started me on the Neupro 6 mg however not helping. This is a nightmare to me. I am having lots of trouble with using a computer keyboard and a mouse. Does anyone have any ideas. Also was wondering what steps I need to take or even what to do at this point, all i do is cry from frustration at this point, any suggestions ?? What are common medication to be taking. They had me on Carbidopa-levodopa 25/100 3 times a day.It was working great and my Dr. took me off stated I would need when get older. Then the Dr started me on the Neupro 2mg and have moved to the 6 mg and not helping at all. I start therapy on Monday and I am just lost and don't know what to do to help me. I'm so lost any advice would help. I go to my neurologist on Thursday any questions i need to ask. Thank you in advance. God Bless !!!

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otolorin    30

Hi loveya1971,

you are welcome to this forum,here you will get lots of assistance.I was like you,when  I first got diagnosed.Crying I believe is part of what you do,when you first get diagnosed of PD.Parkinson disease diagnoses  makes you mourn.But you will get over it as you go along.Carbidopa-levodopa is the best treatment for parkinson disease as they say.I was diagnosed roughly 2yrs ago,and was initially prescribed Carbidopa-levodopa,but refused it,due to the fear of the most serious side effect called dyskinesia,followed by Azilect which only worked for 2mths,then two Dopa-agonists in the same class with Neupro,which gave me the intolerable side effects of sleepiness.Now I am back on Carbidopa-levodopa.The best thing is you need to educate yourself well about these PD medications.Depending on the MD ,some would not mind starting you on C/L,if they think you will derive more benefit from it than the other meds.These group of MDs believe that there is no need to delaying starting treatment with C/L in young PWP.Like my MD he said dyskinesia is treatable if it manifest while on C/L.From my experience,the genetic predisposition to medications for everybody is different.I have read on this forum that some pwp were on C/L for almost 10yrs without developing serious side effects.I understand it could be very frustrating when you are new to these with high expectations for instant positive drug therapy.Try and work with your MD,maybe after several trials,you will get the right meds.Unfortunately all the meds have side effects.Also do not forget to exercise,as it has been found to slow down PD.No giving up hope fior cure.Good luck!

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LAD    215

I was DX at 45. I cried too and then learned that depression & anxiety are symptoms of PD that can go undiagnosed.  I felt incredibly guilty for bringing this into my family's life. However, 2.5 years later, we have all adjusted & adapted. Life is going to be different but it is still going to be good. 

Is your neurologist an MDS? (Movement disorder specialist). If not, that's my first piece of advice.  Try to find one, 

The second thing is exercise. Is your therapy PD specific? That's beneficial. Look into different programs. I do Parkinson wellness recovery and I take ballroom dance lessons with my husband, To me, exercise is medicine. 

As for meds, everyone is different. I'm on an agonist mirapex and do fine... others do not. Meds are a personal decision..,that's why a good MDS is important and your relationship with them is important as well. You have to be comfortable with them. 

You can also post on the young onset forum for some great input.  It may not seem like it right now, but you will be ok. 

 

LAD

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wilsons66604    35
2 hours ago, loveya1971 said:

Hello i am 46 and was diagnosed in May 2017. My doctor has started me on the Neupro 6 mg however not helping. This is a nightmare to me. I am having lots of trouble with using a computer keyboard and a mouse. Does anyone have any ideas. Also was wondering what steps I need to take or even what to do at this point, all i do is cry from frustration at this point, any suggestions ?? What are common medication to be taking. They had me on Carbidopa-levodopa 25/100 3 times a day.It was working great and my Dr. took me off stated I would need when get older. Then the Dr started me on the Neupro 2mg and have moved to the 6 mg and not helping at all. I start therapy on Monday and I am just lost and don't know what to do to help me. I'm so lost any advice would help. I go to my neurologist on Thursday any questions i need to ask. Thank you in advance. God Bless !!!

Hi

i feel for you. 

 

I have am on carbadopa every 4hrs and am wearing a nuepro 6mg patch. I feel that both are needed as I have been feeeling better since i addd the patch.  

Consider a new doc!!!   Im glad I did

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PatriotM    806

loveya1971,

The first thing to do is take a deep breath.  Absolutely nothing has changed simply because you were diagnosed with PD.  You are no worse off the day after you were diagnosed than you were before being diagnosed.  Were you crying and feeling lost in the months and years before being diagnosed?  The latest thinking is that people likely have PD for 20 years before being diagnosed.  You've likely had PD for 2 decades and didn't even know it.  Nothing has changed, you still have PD.

Next, realize that you can and should get BETTER!  That's right, better!  Now that you know you have PD, you can start treatment.  No, I'm not talking about taking any of the dangerous PD drugs that are often worse than the disease itself.  I'm talking about EXERCISE, which is the only thing shown to slow the progression of PD.  Furthermore, starting a PD exercise program should improve your symptoms and help you to feel better than you have in years.  When I was first diagnosed with PD, I walked like a 90 year old man.  I had to hold both rails to walk down the stairs in the morning.  Daily exercise fixed that.  I now walk a MINIMUM of 12,000 steps a day (about 5 1/2 miles) and usually walk a lot more than that.  Last week, I had two days that I hit 30,000 steps. 

When you are diagnosed with PD, you have a choice.  You can sit in the corner and cry; go get a handicap sticker; buy a walker; and decide that your life is over.  OR, you can decide to take your life in your own hands and fight!!!  You can start a PD exercise program; eat healthy; maintain a positive attitude; and live your life normally.  The choice is YOURS!

 

 

 

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Peace    160

Breathe and relax.  I wish one of us could tell you how to short circuit the first stage.  It's a horrific experience and I'm sorry you have to go through it.  But --- you will be fine and you will find balance again.  You need to find an MDS or at the least a neurologist who is knowledgeable on current PD treatment options. 

 

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DaveN    430
21 hours ago, PatriotM said:

Next, realize that you can and should get BETTER!  That's right, better!  Now that you know you have PD, you can start treatment.  No, I'm not talking about taking any of the dangerous PD drugs that are often worse than the disease itself.  I'm talking about EXERCISE, which is the only thing shown to slow the progression of PD.  Furthermore, starting a PD exercise program should improve your symptoms and help you to feel better than you have in years.

Patriot,

Not everyone can get by on exercise alone. Like you, I have a vigorous exercise program. I walk on average 20K steps a day, yet every morning I wake up to cramps in my feet which don't go away until I've taken my Rytary and it has kicked in. If I wear off during the day, my hands get stiff and cramp. Using a keyboard and mouse becomes difficult when this happens. My treatment is a combination of exercise and Parkinson's medications. Not everyone can just get stoned in the corner to help alleviate their symptoms. Marijuana is illegal in the eyes of the Federal Government so if you work for the feds in any capacity you can not partake in your cure without being terminated from you position.

Dave

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Lorit249    5

I echo these posts - in the months before I was diagnosed I cried and had terrible anxiety because I knew that something was wrong - seriously wrong.  I mourned when diagnosed but now I'm focused and trying to learn as much as I can and do as much as I can.  I'm on nothing thus far but starting in an Azilect study next month.  Hoping I don't get placebo but I probably will - lol

Exercise is helping but symptoms are more annoyances.  BTW had the shampoo thing and working with a stress ball helped me.

Good luck

Lori

Diagnosed 4/17 at 49

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LAD    215

I use both PD meds & exercise. However, I feel exercise is medicine. A day with exercise & PD is a whole lot better than a day without exercise.  

Exercise empowers you to fight something you cannot control. You cannot  control your PD but you can control how you respond to it.

Sorry I sound like a cheerleader but I'm a mom of 3 boys.  I won't stop fighting whether is meds, exercise or standing on my head....

 

LAD 

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PatriotM    806
5 hours ago, DaveN said:

Not everyone can just get stoned in the corner to help alleviate their symptoms. Marijuana is illegal in the eyes of the Federal Government so if you work for the feds in any capacity you can not partake in your cure without being terminated from you position.

I don't spend much time sitting in the corner and I've never been stoned.  If I did want to get stoned, I could just pull out what's left in my bottle of Mirapex.  Mirapex just about puts me into a coma, even while driving, which is why I stopped taking it.  As for marijuana being illegal in the eyes of the Federal Government (and many states), that's exactly right and completely ridiculous (like just about everything the government does).  A person can legally take Mirapex, or oxycodone, or any of a hundred other dangerous prescription drugs that are minimally effective but have huge side effect, but can't legally take medical marijuana which is very effective and has no noticeable side effects. 

Edited by PatriotM
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LAD    215

Many of us have strong feelings about issues surrounding PD but we ultimately support each other. I hope we can provide what Loveya1971 was hoping to find by joining this forum.

LAD

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