Workshop in Osaka

On the 29 October, the workshop of Physiotherapy was held in Osaka.
Mariella and Chiu from EPDA, Takashi and I had done together.
The attendants were great!
This peoject is the first one for me.
At first I was not positive, but thanks to all it ended successfully.


photos

my favorite blouson

Last November, I went to Kobe with my husband for family matters.
At Kobe, I walked around and bought a down blouson by agnes b.
When I found this blouson, I decided to buy this.
I had no hesitation to do. That is sporty,kahki and just fitted me (size xxs.)
The price was more than thirty thousands yen, but it is valuable for me much more.
The hood is available from the neck when it rains.
During the last winter, almost everyday,I was wearing this blouson.

The season to wear my favorite blouson again is coming.

my 41 years

I asked a question to Dr. Lieberman about my "on."
He answered as follows;

40 years is an extra-ordinarily long time to have PD. The fact that you are mobile much of the time is a tribute to the slow progression of the disease, the skill of your doctors, and your own ability to keep abreast of the disease. Freezing does occur with PD. If you go to our website and look under Parkinson FAQ and Encyclopedia you will find articles on freezing and PD, and how to deal with freezing.

Being mobile like me may be so rare.
That means my condition from now may not continue.
A few years later, I will not be able to walk at all, is that right?
It may be. Or It can be or it must be?
So terrible to imagine that(I can not walk at all.)

Be optimistic as till now.
I was always optimistic so that make slow my disease's progress.

nishi-okoppe,hokkaido

I am going to Nishi-Okoppe alone next week. I have already sent my electric cart yesterday. Kurione sayd that it would be cool after the 15 August in Hokkaido.
In early next week, I'll send my clothes, so that I had better to bring only a little. It is too bad that my husband will not go and no picture without him. I don't have the confidence to take picture at all. Really too bad!
The right is a photo of my friend.

electric cart

During two years, I have used a electric cart.
It is rented by nursing care insurance,costs around 2000 yen per month.
Riding on this, I can go in places of 30 minutes distance (around three kilometres.
This made me free and happy to go alone.

The current rented one is small and can be divided and fashonable.
Although I have to walk as far as possible, going alone is my great pleasure.

my article

The other day, Alun asked me to email to PDS.
Alun is a Webmaster of YPN.
According to him, they would like me to write an article for their Parkinson magazine.
I said OK and wrote that.


At first,I wrote my disease history by order,then I rewrote focusing the theme titled "My happiness." My forty years since aged 17,have been not easy at all.
But I have big pleasure compensating for the loss by PD,at the same time.

The first happiness is my marriage.
The second is commitment to a patient activity which is a vocation for me because I have never had occupation on account of disease
The final is the availability of dopamine agonists.

I wrote this with help from my friend,poppo-chan.
She helped me with pleasure,she said.
Thanks a lot,poppo-chan!

your future must be better

This is my photo at Glover Garden in Nagasaki.
As you look, I can climb up and walk.
My spine seems to be straight.(Actually that is bent a little.)
Even if I sometimes fall down,I can say my condition is good considering my disease history.
Different from late 1960s or 1970s,now, there are many good medicines (even DBS.)
To the patients before long, I can say "Your future condition must be better than my current condition."
Honestly speaking, I feel envious and lonely.

Ma jeunesse

From aged 17 to 25,I had had difficulty walking.
When I was aged 25,I began to take medicine so that walking was not difficult for me.
I could go to cinema, rock music concert with my husband.
Those time was my jeunesse in my late 20s.
I watched a lot of cinema and saw many concerts,David Bowie, Rod Stewart, Status Quo, Rory Garagher,Led Zepelin, Bob Dylan and so on.

At the time,I was living near the temple where the grave of Rintaro(Ougai) Mori and Osamu Dazai are.
They were famous and great Japanese writers.
This photo is the apartment house where I lived with my husband and a slamese cat.

a family disease

PD changes not only patient's life but also one's family's life.
Once my husband said that my disease had changed his life, he might live the other life.
Another tme, he said that walking was free and enjoyable, but walking with me, the pleasure of walking was denied.

He is reasonable,even I want to say so for my disease.
His words aren't for me and are for my disease.

From the beginning of disease, one had better think PD a family disease.

going to Nagasaki

Nagasaki is in Kyusyu, the island located the southern west part in Japan.
During Edo era, it's the only place alloweded to carry on foreign trade in Japan.
Therefore Nagasaki is a exotic still now.

I will go to see my friend whose husband is a patient.
Last year, I met her twice, Nagasaki and Dublin.
She lives in Germany, teachs Japanese language and comes back to her mother's place every July.

I'll go there with my husband and so I have no anxiety to travel.
That is a four-day three-night trip.
Bye for now!

the first dopamine agonist

Around 1992 or so,I started to take parlodel(bromocriptine), the first dopamine agonist.
For a long time before that, I had been taking only sinemet and artane.
(sinemet: 400mg per day, artane: 2 tabs per day)

At first, any change didn't appear.
But, after a interval, when I stopped to take this medicine, I had realised that effect clearly, the duration of medicinal virtues shortened.
Like that, the effect of parlodel is mild as compared to the other dopamine agonists.

one's life

Yesterday, a friend of mine passed away because of cancer.
He got disease around 2 years ago.
He lived his life in a hurry.

As for my disease(PD), it is so long and hard.
While his life looked beautiful, mine seems to be not so.
The disease is painful and life is not easy.
Therefore to live one's life is precious.

Going out alone

Now, I don't go out alone except near my house.
By power scooter, I can go out anywhere.
But I am afraid of getting on a train or walking on the crowded street.
I freeze and fall down when I'm surprised.

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.
削除 キャンセル キャンセル

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.