Considering alternatives before taking the prescribed medication


#1

My husband was diagnosed with Parkinson's just before Christmas so it's been 3 months of adjustment time.  We're keen to consider alternatives to the prescribed medication as the prescribed medication doesn't offer a cure or delay of progression and has considerable side effects particularly after long term usage.

I'm interested in the writings of Janice Walton Hadlock (pdrecovery website) based on her training in acupuncture and oriental medicine. Her approach was based on 15 years of research into Parkinson's which is quite substantial and whilst she has retired from direct work, her writings make interesting reading. She feels it's possible to recover from Parkinson's either fully or partially although this view is a rather lone voice in the midst of array of sites describing Parkinson's as incurable and degenerative.  It feels quite an isolating position to be considering a route without medication and I'd love to hear if anyone else is out there exploring alternatives.

All good wishes

Ailsa


#2

Hi Alisa,

Type in acupuncture on the Forum website (top right). There are quite a lot of articles on the subject. From anecdotal sources there seems to be some positive views on using it in the early stages of PD, although no claims of complete cure.

As PD medication increases there are several side effects, as many people on the forum relate to.

I personally am somewhat sceptical about Oriental cures? I know some on the forum are more positive. 

 ( I posted a pocket history of myself recently on Introductions)

I wish you and your husband all the best. Fight it!

Regards,

Jules77

 


#3

Hi Jules

Thank you for your response. I'm new to forums so it's a steep learning curve for me.

We're closely following the PD recovery website and the work of Janice Walton Hadlock. Although she trained in Acupuncture she makes it clear from her writing that Acupuncture doesn't offer a cure and can actually make things worse.

Her own curative process is based on Qi Channel theory and she's identified that Qi is flowing backwards in people with Parkinson's. She has also developed a 'holding technique' that identifies and treats unhealed injuries particularly in the foot and leg area of the body. I'm now setting up a group to practice this technique. My friends are willing to join me in learning and whilst we've no idea whether it will help or not it has given myself and my husband a lot of hope and a sense of doing something positive.

Thank you for your positive wishes. I will look out your history of yourself if I can find it on the website - still finding my way around.

Best regards

Ailsa

 


#4
Hi Ailsa, I'm always interested in alternative treatments. I started meds Oct but am keen not to increase too much too soon. I think diet and exercise are key to slowing the progression. I'm not sure there is a natural remedy but I think anything positive you do to help yourself certainly has a positive effect. Good luck to you and your husband.

#5

I too, was reluctant to take conventional meds., but eventually succumbed to taking them. I had bad experiences with Ropinirole, so gradually came off that. My doctor then agreed for me to try an experiment for 6 months, using Mucuna Pruriens, which is a natural form of Levodopa, used in India for centuries and with no side effects. My original neurologist poo pooed the idea. It's made from a special type of bean found in the Himalayas, (similar to broad beans). I experimented with the powdered form and although it gave me some relief of symptoms, it wasn't enough. So now I'm back on conventional meds. (Madopar). This has improved my quality of life a lot, but the Madopar wears off quickly these days. To supplement it, I take the Mucuna Pruriens between doses and find it works much better. My new PD nurse fortunately agreed I could do this.

You will find that it's all a matter of what suits you best and as long as you do plenty of research and act responsibly towards anything you take, then who's to say you shouldn't give it a go? After all, WE know our own bodies better than anyone and ultimately need to take charge.

Twinks.


#6

Hi Ailsa

I have  had acupuncture along with taking my meds.I had 10 sessions and after each one felt as though i had more energy and also helped me sleep that night which i dont get a lot of.

I was told after 1 year i would be able get more  sessions .This i will deffinetly look at.

Hope all welll with you and hubby.

P S you will try anything to make you feel better.

Cheers xxx


#7

Thanks for your email. I'm sure diet and exercise do matter and appreciate your good wishes.


#8

Hi Ailsa

I was interested to read about Janice Walton Hadlock. I'll look into her Qi channel theory. What  part of the country are you (and your group) in?

Best wishes 

Songbird


#9

To DivineR

Thanks for your response. I'm sure diet and exercise do help. My husband's trying herbal medicine and I'm trying to learn about Qi energy based on the advice I read on the pdrecovery website with info from Janice Walton Hadlock. It's quite challenging but also interesting.

 

Best regards

Ailsa


#10

Hello Songbird

We haven't joined a group as yet. It feels as if we're in a minority in not taking medication but I'm sure there are many others exploring alternatives. The GP strongly recommended taking the medication and Parkinson's UK's befriending service couldn't find a befriender linked to anyone not taking medication. This puts me off joining a group. It's hard going against the tide. I realise eventually medication may well be necessary but would like to fully explore all other alternatives and want to focus on this. I listened to a Youtube video of Dr John Bergman this week on solutions for Parkinson's which was not very positive about medications that are usually prescribed. This encouraged me.

Ailsa


#11

Hi Glasgow girl

I'm glad the acupuncture worked for you. It seems far too long to wait a year for more sessions if they're helping you. I agree it can be a very distressing not being able to sleep - it's a kind of torture really so anything that helps must be good. I listened to a Youtube video by Dr John Bergman on 'Solutions to Parkinson's' and I understand there's also a video about sleep so I plan to look at that one next. You might also want to have a look at it.

Best wishes

Ailsa


#12

Hello Twinks

I also read about Mucana Pruriens and saw it for sale in a health food shop. However, the pdrecovery website that I'm following suggests that the Dopamine cells aren't dead but dormant so I am interested in ways to get the cells to start working again rather than taking replacement Dopamine. This may be idealistic but that's where I'm at currently. I agree we do know our own bodies and each person is unique. Thanks for your response. 

Best wishes

Ailsa


#13

I too am looking at ways to keep the cells active, preventing damage with anti oxidants , stress relief, meditation.  I do wonder if feeding the brain with dopamine makes it "lazy" , D vits good but need to remember k2 to prevent calcium build up ....so complicated but trying my best. I guess PD medicine is reactive rather than preventative.  We are all so different so one size does not fit all.  Good luck all to finding benefits that match our individual brains. xx

 


#14

Hi Teehee

Have you looked at the pdrecovery website? I don't know anyone who's interested in it but it is based on 15 years of research into Parkinson's even though some of the ideas are unusual. The author, Janice Walton Hadlock suggests Parkinson's is usually caused by an unhealed injury (usually to the foot or leg but could be in another body area) and a personality type that experiences a lot of fear. This she beliefs disrupts the Qi energy (based on Chinese Channel theory) which is either running backwards or is blocked. Anxiety does seem to be underpinning. I notice symptoms deteriorate when there is anxiety so as you say stress relief and meditation are important. A personality that has run on stress has been fuelled by adrenaline which can override dopamine.

We've been to see a medical herbalist and she's also concerned about calcium build up. It certainly is complicated and trial and error seem to be the only way forward. I'm focused on the recovery website. I know that full recovery is unlikely but anything to halt deterioration must be worth trying. Unfortunately none of the prescribed medications do this. They seem to just mask symptoms - that's a bit depressing so the recovery website helps me remain optimistic. 

Best wishes

Ailsa


#15

Thanks Alisha,

Interesting the new approaches seem to focus more and more on lifestyle. I am one of many who worked long hours, shift work, in a stressful environment and do believe this impacted on my health in particular adrenalin.  I am increasing vit D as lots of research about protective qualities but risk if too much D puts calcium build up in the blood which is counteracted by K2. Interested in foodstuffs that seem to put the brain in alert mode and read some stuff on re activating dopamine cells.  The theory of yoga and meditation breaking the stress cycle and giving the brain a well earned rest is also worth a go. 

Will have a look at pd recovery site, thank you and take care x

PS found John Gray has a diet for reversing Parkinsons, American.


#16

As someone who's been under a lot of stress over the past 15yrs., I find this thread very interesting.

I had a demanding job as a Primary school teacher for 26yrs., before that and was in charge of a 40 place Nursery during my last 4yrs. of teaching. Loved the little tots, but large class sizes of very young children requires plenty of dedication and energy!  

My OH started drinking heavily after the death of his parents and also his brother, who was killed in a car accident in New Zealand. So for 15yrs. I've been living with an alcoholic......treading on eggshells every day, wondering what kind of mood he was going to be in! I was diagnosed with PD almost 5yrs. ago, with no family history of anyone else suffering from Parkinson's.......so it makes you wonder.....

I made the decision to leave my OH in March this year, (not an easy thing to do, after 42yrs. of marriage). The stress was making my PD worse and I HAD to consider my long term health. Since moving out, my condition has improved, so stress definitely plays a part.

Might it be possible to re-train our brain in some way, so the dopamine works properly? I just wish someone would come up with some answers!

Rambled on enough now, but keep this thread going........

All the best to everyone.

Twinks.

 


#17
Hi Twinks, It sounds like it was a big decision for you to move away from the stressful situation you've lived with. A brave one and hopefully one that will see you looking after yourself for a change. I too believe that stress plays a part in the increase in our symptoms. Sometimes you have to be selfish with PD and yourself until you find that instead of suffering from it, you're living with it. I haven't quite reached that yet but trying.

#18

Thank you DivineR, for your encouraging words. It was a very, very hard decision. Being selfish and putting myself first, does not come naturally to me.


#19
Yes Twinks, being selfish is not easy to most people. It's not even being selfish really. It's your right to feel the best you can. Practice makes perfect..... Start today!

#20

Not selfish at all twinks you just stopped being a doormat, brave and the right thing to do.  You gave what you could at the time but you have to look after yourself.  I am trying to keep stress to a minimum but not easy but giving it a good go, includes not watching news on tv, no violent or moving dramas on tv cinema and watch more comedy, do you know seems to help me. love to you and the divine one.  will post if anything new.