Hello to everybody :)


#1

Hello, everybody :)

I care for my best friend who has Parkinson's Disease.

She is middle-aged, but was fortunate to be diagnosed early,

so she doesn't suffer from tremors as yet,

however, she has problems controlling her arms, hands, and legs at times.

Her difficulties vary a lot, and she is a lot worse when she doesn't get enough rest.

Sometimes I do research for her and I've also built a Parkinson's support page

because I think there just isn't enough done to help people with PD.

Helping her is massively stressful, but I struggle on as best I can.

Anyway, I am glad to join this community, and I hope I can be helpful to all of you.


#2

Hi everybody,

 

I joined this forum some years back when my husband was diagnosed with hereditary liver diease and encephalopathy with parkinsons symptoms.

Encephalopathy is when your liver is not functioning to clear toxins from your blood and a build up of metal sits in the brain. 

 

We had hoped that after transplant this would clear.

Unfortunately after transplant he had a problem with the Bile Duct and was prescribed  URSODEOXYCHOLIC ACID. You may have read the report on the research into this liver drug as scientists have now discovered it works well for Parkinsons also.

 

My husband is a prime example of this. All the time he took the Urso (for short) his neurological symptoms were very few. Last February as his Bile Duct had been OK for some time the Urso was stopped since then his Neurologist has confirmed that he has again Parkinsons symptoms.

 

We are just hoping that it will not be too long before it is Licenced for Parkinsons and he can continue to take it. At the moment he has been prescribed Sinemet Plus. Also awaiting Brain MRI and neuropsychological testing.


#3

Hi, Cabbyanny :)

Thanks for sharing - if we all share info and experiences, we all have more

things at our disposal for tackling this awful illness.

I wish you and your husband all the very, very best.


#4

kaihoukan & cabbyanny,

There will be a support group somewhere near both of you, you don't have to have PD to join the groups are there also for friends, family & cares, I am a member of Lincoln branch without them I think I would have cracked up. The friendship I gained I value highly and I am also the youngest member. 

 

Karen BB.


#5

Thanks for the heads-up, Bettyblue :)

 


#6

your very welcome my love anything else just ask i am happy to help in anyway i can.

 

bb xx


#7

Hello, what a good friend to have..... I have had parkinson's for 9 years, well. that's when I was diagnosed. I suffer from a tremor just recently due to stress. I find calming my thoughts help , I'd like to meditate but my mind is always too busy, however, I keep trying.I also find that walking, about 40 minutes 3 times a week has been my starter but I hope to increase this to another 2-3 days as I get stronger. Unfortunately my neurologist tells me the tremor is the hardest to get rid of :( Best Wishes


#8

Sugarpud, the hardest thing about meditation is switching off the conscious mind.

If you have PD, that makes getting into a consciously thoughtless state even more difficult,

especially if you're on something like Ropinirole, which then makes it even harder.

Please try telling yourself that you can switch off thinking any time you want.

It's a good way to start.

I still have real problems switching my mind off, so you're not alone :)

 

Walking is good, though :)

My Tai teacher always said: If you can walk - you can do Tai-Chi.

Tai-Chi apparently stopped Chen Man Ching's TB symptoms.

Perhaps it might do the same for PD sufferers.

The downside is that you wouldn't get much appreciable benefit, if any,

for months.

Also, you would need to practice it every day.

When I did it, my posture got a lot better, and I became a lot calmer and more confident.

(I don't have PD, but I am a carer for my friend.)