Newly Diagnosed

Eternal,

Welcome to Healing Well! Glad you found us. Parkinson's is not a diagnosis that anyone wants. However, it's not something you have control over. No one knows 'why me?' Or 'why you'? The best thing you can do is arm yourself with knowledge and fight back.

First I would make sure you have a great doctor - preferably a neurologist - even more preferable is a Movement Disorder Specialist (MDS) who is a neuro that specializes in movement disorders like PD. It's important to have a good relationship with your doc.

I would encourage you to educate yourself on PD meds and play an active role in your treatment - partner with your doc, share your symptoms and concerns, ask questions of your pharmacist. No one knows how you feel better than you. Start an exercise program - ideally one geared towards the needs of someone with PD. If you take Sinemet or Stalevo change your diet accordingly.

You are not alone. Perhaps you can find a local support group - although preferably not one with folks who are significantly affected - that can be a bit overwhelming in the beginning.  (I started a young onset support group for exactly that reason.) Perhaps you could have coffee with someone who has PD but is not too affected.

When I was diagnosed my priorities and sense of urgency changed. I bumped up things I was going to do 'some day' - am doing them sooner rather than later. I'm spending time doing things that are important to me or give me satisfaction - the other stuff has become less important.

The best thing about having this disease is the fabulous people I have met. I am grateful for that. I hope you will find the same.

lizzy4451

Eternal,

Sounds like you are on the right track - seeing a movement disorder specialist.

You mention that you are concerned about taking Requip XL. May I ask why you are concerned? Requip is a dopamine agonist, as is Mirapex. These are meds typically, and appropriately, prescribed for newbies such as yourself. I have been taking Requip (now Requip XL, the timed-release version) since diagnosed in 2001. It has worked for me. It's true that compulsive behaviors - particularly regarding sexual behavior and gambling - are potential side effects. Make sure someone you know and respect is aware and can intervene or counsel you if they detect a problem.

Lastly, I don't know where you live but the National Parkinson Foundation (NPF) is sponsoring a conference for people with young-onset Parkinson's disease in Cincinnati, OH on Friday, Nov 16 and Saturday, Nov 17. Friday is only a meet-and-greet session in the evening. Saturday is a full day of speakers. You mentioned you are in your 50's, as am I. It would still be appropriate for you to attend. The early bird registration is $30 and includes the meet-and-greet Friday, sessions on Saturday as well as Saturday breakfast and lunch. THe hotel room is additional. If interested, goto http://www.parkinson.org/yopc  for more info.

Keep in touch and let us know how your journey goes.

lizzy4451

Hi Lizzy, hope you're doing well.  Thanks for your answer.

My concern is not about that, I think I can manage that part.  It is about the life threatening ones (severe allergic reaction, sudden drop of blood pressure, respiratory problems, etc. etc.).  But I have no choice, since all those medications have side effects.

How do you manage the nausea and vomiting?  It's unbearable for me despite Domperidone.

Unfortunately I'm unable to attend the conference this time, I was thinking to register to watch it online.  I value very much the information.

I'm still having problems to sleep.  I feel tired, exhausted.

How am I going to fight back if I had no strength?

Eternal

Eternal,

Sleep issues are very common among people with PD. It seems there are two groups ... one who can't get to sleep ... and one who can't stay asleep. My problem is quitting ... quit doing whatever I am doing and get to sleep. There's always more to do ... tasks unfinished. But ... I just gotta quit.

When I started Requip I did lose my appetite for about 6 weeks. I lost about 10 pounds. At the time I was concerned about losing any more weight. Today I say, 'bring it on!'  After that initial period I never had nausea or loss of appetite, even when increasing the dosage.

Eternal, it's wonderful that you have the support of family.  THey will try to understand and should be kept in the loop regarding your symptoms, mental attitude, etc. However, as in many situations, no one understands better than someone going through the same situation. I have found great support among people with Parkinson's.

Another comment you made earlier was that you feel depressed. That is understandable. Many people with PD suffer from depression. It is an ugly beast and can rule your life. If you are feeling overwhelmed with depression, I would strongly encourage you to seek medical advice. There are ways to overcome depression - whether it is due to a chemical imbalance or due to the situation (two different things). Just don't let depression rule your life.

Ed/Yek, great to hear from you. I have a good PD friend with balance problems. Somehow the balance problems disappear when he's on his bicycle. Have you figured out how to carry a fishing pole while riding a bike? Let me know when you head out on a cross-country bike ride. I wanna be on your list of stops! (That's true even if it isn't on a bike.)

lizzy4451

Eternal,

Good to hear from you. Yes, Requip works for me. I was prescribed Requip (the original one that had to be taken 3 times a day) when I was first diagnosed in 2001. At that time I took a total of 4 mg/day. I have continued with Requip, but now take the Requip XL. Requip XL became available 2-4 years ago and is taken once a day because it is a time-released. I currently take 18 mg/day but have talked with my neuro about increasing to 20 mg/day. I tried Azilect for a few months, but didn't notice any improvement in my symptoms, so talked with my neuro and discontinued taking it.

You said you were taking 3 pills a day and maxing out on Requip XL. How may total miligrams per day do you take? You indicated you weren't noticing any improvement in your symptoms. How long have you been taking Requip XL? When do you take it - morning?  evening? All at once or multiple times per day?

lizzy4451

Eternal,

I realized I didn't answer your question about tai chi.

Yes, I have heard many times that tai chi is great for people with Parkinson's. I've heard it is good for agility, flexibility, overall health and balance issues. I've also heard yoga, swimming and dance are good. Most importantly is the overall benefit of exercise for people with Parkinson's - especially if you and/or the trainer pushes you to do more than you think you can. It's called 'forced exercise'. An example is someone with PD who rides a tandem bicycle along with a person who does not have Parkinson's'. The non-PD person 'forces' the PD person to ride harder, longer, faster than they think they can. There have been studies that indicate 'forced exercise' slows the progresion of PD.

Another example of forced exercise, and a program I have participated in since 2006, is non-contact boxing. I participate in a boxing-based fitness program for people with Parkinson's. We jump rope, do jumping jacks, push ups, sit ups, hit the heavy bag and my stress-reliever, the speed bag. Every class I am pushed to do more than I think I can. I believe it has slowed my progression. I am in a study now which is evaluating the progression of people in this program compared to folks who do a more traditional physical therapy regimen. I feel it has made a difference in my overall health and PD progression.

lizzy4451