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AFWill

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Hello everyone,

I am Will, I found this forum yesterday and signed up, this is the first time to post as I am a little shy, but here goes. I was DX about 2 years ago with YOPD, I was retired from Active Duty with the Air Force and have since moved to Japan with my wife of 8 years and out two children, my daughter who is 4 and my son who is 2. My wife was pregnant at the time of the DX which made that a pretty eventful year.

 

For awhile I was being treated by local Japanese doctors at the Tokai University in Hachioji Japan, however, I accepted a job at the University of Maryland and have since fallen back under the care of the U.S. Military doctors. It's not all bad there as I do have a great Neuro at the moment at the Naval Hospital in Yokosuka Japan (at least until the Navy moves him somewhere else and I get a new one).

 

In Japan I was started on the Japanese equivelent of Miraplex and Sinemet, since then I have moved off the Miraplex and recently gone on Azilect along with my Sinemet. I have to say that the combo of those two has done wonders and I am feeling better now then I have in quite some time. I still have plenty of issues with my stomach and the stiffness in the morning is enough to make me want to scream, but overall it could be much worse.

 

I have been reading a few of the threads on here, and just wanted to say thank you to all of you, I am not sure if you realise how many people read your posts and questions, dicussions and successes and benefit from them, but I know I did.

 

So cheers, it seems strange to come forward with people I have never met and be so open but, thanks for being here and reading.

 

Will

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Guest TexasT

Cheers to you Will, and welcome to the forum.

Don't be shy.

Just jump in whenever you feel like it.

 

Tonya

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Welcome Will!

I'm in Japan, too. Kanazawa, ishikawa.

One 13 year old daughter in 2nd grade at public junior high. Husband and I teach, him at the newspaper culture center, me at a university.

How do you like Japan?

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Thank you for the welcome Tonya and Kim, I appreciate it.

 

I love Japan, my wife is Japanese, I met her when I was stationed here with the U.S. Air Force. She has been very supportive through all of this, even when I told her I would understand if she felt she could not handle it (it sounds silly when I say that now, but I just didn't know how to react).

 

My daughter just started pre-school and is getting very good at speaking both Japanese and English, which means she asks me for something in English and when I say no she will ask her mom, like I can't understand or something, she is pretty sneaky.

 

The food is awesome, and to be honest the medical care is very good, I did have to go to a few different hospitals before I found one that I liked. The best that I went to were the Tokai hospital and then a famous Neuro hosptial in Ochanomizu near downtown Tokyo.

 

How about you? I have the benefit of my wife and some limited Japanese (I am working on it, and learning to write Kanji has really helped with my hand tremors), but I imagine it must be very difficult to go through this with the language barrier.

 

That is cool that you teach at a University, I will start my graduate work in the Fall (just completed my BS this Spring) so I am looking forward to that, but all the writing has got me a little intimidated.

 

Thanks again for the welcome,

 

Will

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Are you aware that PD is classified as special so medical care and medication is subsidized by the Japanese government? This scheme provides me with totally fre drugs and a very low cap on what I pay out of pocket for inpatient and outpatient hospital care for PD. If you don't get this benefit you should ask at the insurance office hoe to get it.

 

Where do you live now?

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Hello Will,

 

Willcome to this forum, haha, that is a Marcia style joke. Seriously, Welcome to this website. Its a fact that we are closeknit and very supportive of each other. We all have PD doctors but we don't do anything that they say until we check with each other. I couldn't imagine ever feeling so connected to an internet group like this until I became connected to this internet group. I'm sorry that we are joined by such a sidewinder snake of a disease called Parkinsons that blindsided most of us; but we learn how to deal with it. Three things I may suggest are excercise every day to keep flexible, get a good doctor and drug program and keep a good positive attitude. There are worse things that could be laid at your doorstep.

 

 

Take care Will,

 

Don't disappear on us!, jb

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Welcome Will! I had two Japanese Aunts. One my uncle met when he was stationed in Japan also. Much older than you and many years ago.

 

mj

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Kim, I live right now on the outskirts of the Tokyo area, when I was covered under my wife as a spouse I paid very little for a lot of treatment. Now that I am again associated with the U.S. though I am not covered, and I see the U.S. Military drs. That is ok though, because all of that is 100% free for me since I am medically retired, so I don't pay anything for visits, drugs, emergency calls, which is quite a benefit.

 

Thank you to every one for the welcome, I am sure I will be around for a long time (I know I am not going anywhere) and as strange as it seems I am excited to be a part of this place.

 

Will

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Great that you have access to free care! And living just outside Tokyo you can have big city life only when you choose. We've lived 16 years in Kanazawa and it has grown since we first arrived, but it is certainly no big city. We like it though.

 

My daughter is bilingual, but my Japanese isn't as good as it should be. Mostly because I'm lazy. If I can communicate I'm happy, even if I make crazy mistakes.

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HAHA, I don't think that there is a people who will forgive your language mistakes as much as the Japanese, I can understand many conversation very well, but when I reply it is most certainly broken and in the wrong tense.

 

Sometimes I miss the wide open spaces, that's for sure. If I really miss though I can always go back to my Mom's house in DE... talk about wide open nothing, it has a strange appeal at times for me.

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Hi Will..welcome to the forum..we have good people here kind and supportive..and a few laughs thrown in..what's life without a laugh?

 

Best wishes

Em

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HI and welcome to this forum...I am very much like you Will, new to all this and while I read a great deal of the posts, don't post a lot myself....I am a 45 year old mum living in Hamilton, New Zealand and was diagnosed only 2 months ago, though have suffered for the last 4 years. The support network is amazing here, and I will post a lot more from now on. You feel really isolated with this disease, and while people are kind and ask how you are feeling, they really don't understand. The people connected with this forum totally get what you are going through, never judge and are there to lend advice at all times.

 

Keep posting and I look forward to chatting with you more in the future.

 

Regards

Skippy (Kim from NZ)

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Welcome! This forum has become a great support system for me and I'm sure you will find it to be also. The people here are awesome.

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Will

 

So glad to have you join our group.

Looking forward to more 'conversations' with you.

 

Have a great day

 

eileen

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Thank you everyone for the all the good wishes. I can understand about the loneliness, I always have people around me but sometimes you do feel isolated. I also sometimes find that I make people uncomfortable, in my mind I think it is because I remind them of the mortality of life or some such thing. I had started a Team Fox group here and a good friend of mind who is a pro-bowler here in Japan is the person who the team will sponsor first in the Japan Open in Nov.

 

So being excited about this, I made a Facebook page, and wrote to all my friends and family, and asked them to like the page and spread the word (not asking anyone for money, I will do that part here on my own) and so far a total of 6 people have liked the page. It was disappointing but, as my wife said don't worry, and every little bit that I do will help. So I am moving forward and starting to set up some talks here at the local military base with some of the squadrons and organizations about Parkinson's, which is scary but I think I am ready to do it.

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Thank you for the welcome Tonya and Kim, I appreciate it.

 

I love Japan, my wife is Japanese, I met her when I was stationed here with the U.S. Air Force. She has been very supportive through all of this, even when I told her I would understand if she felt she could not handle it (it sounds silly when I say that now, but I just didn't know how to react).

 

My daughter just started pre-school and is getting very good at speaking both Japanese and English, which means she asks me for something in English and when I say no she will ask her mom, like I can't understand or something, she is pretty sneaky.

 

The food is awesome, and to be honest the medical care is very good, I did have to go to a few different hospitals before I found one that I liked. The best that I went to were the Tokai hospital and then a famous Neuro hosptial in Ochanomizu near downtown Tokyo.

 

How about you? I have the benefit of my wife and some limited Japanese (I am working on it, and learning to write Kanji has really helped with my hand tremors), but I imagine it must be very difficult to go through this with the language barrier.

 

That is cool that you teach at a University, I will start my graduate work in the Fall (just completed my BS this Spring) so I am looking forward to that, but all the writing has got me a little intimidated.

 

Thanks again for the welcome,

 

Will

 

Welcome, Will. I don;t post often, but I care. Best wishes as you begin to share you story with others who have been there. We are all on this journey together and it really helps to have a shoulder sometimes. I hate the norning stiffness, too. :-(

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Welcome Will

 

I, too, do not post often but try to read regularly. I have found this forum to be an amazing source of info and help. It is especially helpful to find others who are going thru the same trials and understand. Very caring people here! Welcome to the group.

 

Jen

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Welcome! so glad you found sinemet and azilect so quickly. I went for three years pretty much non functional because I was under the mistaken impression that sinemet caused PD to progress which it does NOT do any more than insulin causes diabetes to progress. From here it's just a matter of tweaking dosage. I fainted a lot from azilect so had to stop taking it but it's a really good drug and I may try it again as I'm working on reducing my fainting problems.

 

Glad you like Japan but I bet you do get Island Fever on occasion. You can always go to Google Earth and visit the wide open spaces of Australia or Texas or Kansas :mrgreen: I have a similar problem when I'm away from the coast for any length of time. I get "ocean fever". Or "lack of ocean fever"

 

Don't forget to look into deep brain stimulation and other neurostimulators if you have tremor problems, dystonia or unmanageable dyskinesias. they work really well.

 

Here are some other things to do immediately. PWP very frequently have osteoporosis so get a bone density done and start on treatment drugs if you have it.

 

Get your vitamin D, B12 and folic acid levels tested as well as homocysteine levels (should be low) and supplement as needed. Get your calcium levels tested and supplement with calcium citrate, not calcium carbonate like in tums. If you have constipation problems milk of magnesia tablets work very well with minimum side effects and are cheap and easy.

 

Be sure to take your meds about an hour before eating if you can. If you have nausea you might try a different brand because some people are allergic to the dyes. I can take parcopa brand name which is pink and a quick acting sinemet, with no problems but the blue generic makes me extremely nauseous to give you an example of how different two identical active ingredient pills can be.

 

The other thing is if tremor is a problem some people get good results from amantadine. I'm luck and sinemet stops my tremor totally.

 

Remember also there IS NO UPPER LIMIT ON SINEMET. There is only an upper limit on sinemet for YOU. You and your docs experiment to get the best possible results with the least side effects. My feet dance a little and I just consider it my reminder that my meds are working and really welcome seeing it because I got my life back when I started on it.

 

Check your blood pressure when you lie down, sit up and stand up to see if it fluctuates a lot. I use a nitroglycerine patch and short acting capsule at night because mine goes really high, then drops when I get up and when I eat. You probably don't have this but it is fairly common and so easy to treat. Low blood pressure, drink a big glass of water. High blood pressure at night, use a patch or short acting bp med.

 

Watch out for any leg swelling. If you notice any difference in the colors of your legs, get in and get an ultrasound. I had a pulmonary embolism that would have killed me if my SO hadn't given me CRP and blown the clot out of the artery and it seems that we with PD are prone to DVT's, clots in the leg veins. I take two lovenox injections a day and it is so much safer than coumadin and easier but more expensive but you can perhaps get it from the VA. You are again unlikely to have this problem but file it away in the back of your mind.

 

Last of all beware of any doctor that blames any "new symtpoms" on PD. Every one of mine was NOT PD and was very treatable.

 

Good luck and come back often. A lot of nice people on here and the docs are so helpful and caring as well as super knowledgeable.

 

Sinemet gives you your life back. ENJOY!!

Edited by netgypsy

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Thanks to even more welcomes, that is so awesome.

 

For those that don't post often I do appreciate the time and insight, you have helped very much to make me feel welcome.

 

Netgypsy,

Thanks for the long and indepth post, I have some issues and do watch my blood pressure because of the Azilect. Many of the foods that I love here in Japan do have L-tyrosine so I need to watch what I am eating (just in case).

 

I think my Sinemet dosages are pretty spot on for me, although lately I have had a little off-time in the early afternoon so I may split my morning dosages up a bit, I will ask my Neuro tomorrow at my appointment.

 

I am only 32 years old, so even though I feel like I am 80 years old in the morning, I know that my body is not and walk alot. I don't drive so I make sure to walk to work (about 30 min each way) and walk around during my day and in the evening.

 

I am actually the other way around on my Sinemet, I eat about 1 hour after taking it, one of the first and worst PD symptoms for me is my stomach muscles being slow and not digesting my food or meds correctly. I went through alot of Dr.s before I sorted this all out. So it really helps me to eat when my medicine is at its peak and to eat smaller meals (if you are having stomach troubles and have questions, let me know maybe I can help on that one)

 

 

Have a great day everyone,

 

Will

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Will, thanks for the link. Interesting site that I hadn't seen before. It also sent me off on a search for DBS options, and I found that two hospitals in Kanazawa do it, and it looks like it is almost or completely covered with the special disease status. Now I'm wondering if I should change from the university hospital to one of the two that do DBS so if/when I want to explore that option I'll already be in the right place.

 

How was your appointment today? I have to say I'm a bit surprised by your age. 32 is really young to be given such a burden. Your attitude is great, though, and really, I believe attitude plays a big role in how we feel and how our body performs. So hang onto that good vibe you've got going!

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Eating an hour AFTER you take the meds is the most typical way to do it but some people have nausea problems and have to eat first. IN this case a light carb meal with carbs with a low glycemic index would probably be best - like pasta with a little tomato, not much oil or meat - pasta, al dente has a fairly low glycemic index. then you can pig out once it kicks in.

 

I too have the stomach emptying problem.

 

At night if you take sinemet CR and you can bump up the dose a bit with your neuro docs permission of course so you aren't so stiff in the morning. I take 300 or 400 mg CR - 1.5 or 2 50/200 tablets and I'm pretty good in the morning. You know you took too much if your feet jumping keep you awake

 

An interesting study Kim - people with Parkinson's disease should NOT DRIVE AT DUSK so you need to figure out a way to get hubby behind the wheel. At least insist that he accompany you any time you have to drive when it is really dingy out. It seems we don't process visual cues well in low light although we're OK after it gets dark and during good light. Weird for sure. The study is on this forum somewhere I think.

 

Lots of great studies on the benefits of exercise.

 

The other thing to remember is if you're having side effect problems, keep your protein down during the day and you can cut your dosage of sinemet usually and then make up for it at the evening meal or a late night snack high in protein.

 

One other thing in studies of azilect there is no problem with, is it tyosine, tyomine, whatever. They really ate a lot in the studies and still got no problems at all. Lit just says don't eat five or six heavily loaded items in large amounts at one meal like aged hard sausage, liver pate, yoghurt and dark beer all at once. You could eat a little of each I'm sure but I wouldn't drink a quart of beer, eat a pound of of chicken livers, a hard salami sandwich with aged cheese and a yoghurt dessert all in one meal. HMMMM I bet the Germans with PD could tell us if it's problematic :mrgreen:

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NetG, next time I visit friends in Germany I will ask them, HAHA

 

Well yesterday's appt went well (thanks for asking Kim), my Neuro actually just got back from a conference in the U.S. that dealt with PD (He said the Navy paid for him to go, since I was his patient...got to love the goverment). So he learned some new things, his last experience with PD was really in school and during is intern and although he is pretty young (I think early 30's) it was still a little while ago.

 

So, bottom line is that he wants to stop the Azilect (Less meds is better) and just use the Sinemet, he is asking me to write down everything for the next two weeks (dosages, how I am feeling every hour) to get a better idea for sinemet and azilect. I also take depakote for siezures, but he wants to get off of this. I had some seizures during my inital treatment in the military but I believe this was due to the pain medication they were giving me before the PD DX, and I don't have epilepsy, my Neuro agrees.

 

So that is where I am at the moment. I was DX'd at 30, so I have had a bit of time to get used to things, and I am starting to come around to the idea that having PD is just a small part of who I am. I think I said this in another post, but I am starting some fundraising stuff and being more open about YOPD, I never really hid anything, just wasn't so vocal, I think it is time to speak up.

 

Will

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