less-developed country

The other day, the file was delivered from EPDA, as I wrote.
As reading that, I felt that Japan is a less-developed country about environement of PD patients.
In Japan, there are no PD nurse, no Multi Disciplinary Team, no helpline except some medicines.
In UK, it must be not easy to set this environement.
In Japan, we have many many things to do.
JPDA(Japan Parkinson Disease Association) is not reliable, the staffs don't mind the patients, especially young onset patients.

I belong to APPLE (Active Parkinson's Patients Library on E-net) http://www9.ocn.ne.jp/~pdiyasi/ runned by around 10 PWPs indeed,almost young onset.
I don't belong to JPDA.
This organization is too squaresville( or traditional?)
We, APPLE members have brought results, I think.
But we don't have much money and few members with abilities.
This may be my complaint.
I only do what I can do.

drugs for pd

At present, my dyskinesia has reduced than those days.
Usually dyskinesia does not appear so much except when nervous.
The reason of decrease is that the quantity of Sinemet came down from 4 tab to 1.5 tab a day.
One dose, from 1 tab to 1/3 tab.
That's because of dopamin agonist, permax or mirapex.
The benefit of agonist is great.
The history of my medication proves that.
The kinds of drugs which are available now in Japan, are less than in UK.
Ropinirole(Requip), entacapone, stalevo, rasagiline, apomorphine, rotigotine etc. are not available yet.
Nevertheless, the patients diagnosed lately are so blessed with PD life.
I really feel envious.

medication in travel

I've just come back from short trip to Matsuyama(Ehime prefecture.)
Matsuyama is famous for Shiki Masaoka,Haiku poet, and Soseki Natsume,famous author at meiji era.

My husband I stayed there for 3 days.
It takes one hour and 20 minutes from Tokyo to Matsuyama by plane.
Usually I don't change my medication shedule, however this time, I had to change my medication.
As I wrote the other day, I used to take my medicine four times a day, around 8h, 12h,16h and 20h.
In this travel, since I woke up earlier, around 4h30-5h, the pill time was between meals.
The timing of medication was so difficult.
my medicine works only when I take that before meal or during meal.

This time, I failed the timing of medication.

I the Cafe, I collapsed onto a cupboard with loud sound.
I was shockked.
Therefore I could not stand up for a while.

I had better not to change usually medication.
The way how to take medicine is important.

Karaoke

Every Tuesday morning, I go to day care center for physiotherapy.
Since this April, I have to stay there for 4 hours and do other programs by regulations.
Today's program was Karaoke.
Usually no one praise my song because naturally I'm terrible at singing.
However, this morning, at the day care center, some praised my song!
Such like this happened for the first time.
Among the elderly persons my song might sound better.
Anyway I feel good.

dyskinesia

At about the begining of medication(levodopa), I had some side effects as I've already written.
However at that time I had no dyskinesia yet.
Dyskinesia is involuntary movement caused from long time using levodopa
It appeared around 5 years after the starting of levodopa.
Suddenly I found out that my body was wriggling.
I didn't know the reason why it happened, at the time.

There were no information, no patients association and no YapWeb.
I told about this symptom to my doctor, but he made on as he didn't know that.
He only wrote that into my medical record and said nothing.
At heart he had recognized that as dyskinesia, I think.
It was around 1978.

It was long afterward that I considered this movement because of levodopa, excessive dosage.
At first, I had been taking 750 mg of levodopa alone one dosage, 4 times a day.

Around 1978, levodopa alone (powdered medicine) had changed in tablet form, Sinemet now.
And so all I need to do became to take 4 tab (400 mg) of Sinemet per day.
This change improved greatly my QOL.

levodopa

32 years ago, there were no drugs for PD except artane and levodopa alone. Levodopa worked remarkably. Until then while I could hardly walk and move, with levodopa I could move totally like a healthy person.I found out that it was enjoyable only to walk.Since levodopa was alone, I had to take that 3g (3000mg) a day.Therefore I sometimes had nausea and vomitting. Still and all I was happy to be able to move freely for 4 hours per a dosage.
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earlier stage of PD

The file was delivered from EPDA to me, yesterday.
These brochures are designed for the patients with an early stage of PD.(I am a patient with a late stage of PD?)
But these will be helpful for me and then mailed to Lizzie to say thank s to her and others.
When I was diagnosed (32 years ago,) no one could help me other than my doctor and my husband.
From 1965 to 1973, those days were the hardest in my life.
My later 10's and earlier 20's, if not PD, could be bright!

At the time, I'd never heard about a neurologist.
My difficulty in walking was gradually getting worse.
While I could get into a university,I was feeling blue.
I went to see several doctors,however none of them could find out my disease.
For 8 years, such a long term,what patience I had had!

As my husband (lassmate in the university) was strange a little (still now crazy,) he and I married before diagnosis.

my current condition

Well, I am going to write about my current condition.
Firstly my medication;

Sinemet: 150mg a day
In Japan 1 tab (100mg of L-dopa) called "100mg", equivalent to 125mg in UK
Mirapex: 8 tab of 0.5mg=4.0mg a day
Synmetrel: 4 tab a day
Depas: sometimes

My best season had passed, I think.
From begining of my medication to several years ago, anybody didn't know my disease except my close friends.
Actually these 20-25 years were the best season for me even with dyskinesia sometimes, I feel sorry it'll never come back.

Even now except freezing and falling, I can walk.
But actually I go out with my husband or my carer.
When I happen to walk alone,I have to walk carefully.
With panic, I get frozen easily and I can't walk because my muscles of calves get tightened.

Yesterday, I sang many songs using "Karaoke" with my patient friends.
My voice is sometimes strange because of disease, rusty and upset.
Without these sympotoms I would be a good singer. Maybe (lol.)
These appeared recently.
Too bad.