so where is everybody?

[scooby0906]

hi, I have just been diagnosed with PD. I came on here to interact with others but unfortunately there isn't much going on. If anyone would like to chat please post or message me.

[oldlux]

Where abouts are you. I am new by 12 months and still make new discoveries. In Hamilton/Waikato we have good informative groups to contact. Cheers

[scooby0906 in reply to oldlux]

I am in Rangiora / Christchurch area. I am new to all this and learning daily. It's a shame we are not closer but thanks for the reply

[DaMoJo in reply to oldlux]

Hello Oldlux I'm from Hamilton. I've just made enquiries with Parkinson's Society interested in UPBEAT group.

[Jenag in reply to DaMoJo]

Hi Damon

The Waikato Upbeat group is great - we have monthly get togethers with a wide range of interesting speakers. Come along to our next one - you will find a friendly upbeat group.

cheers

Jenny

[DaMoJo in reply to Jenag]

Thnx Jenny, look forward to meeting you all.

[loujigsaw]

Hi great to see you today. 😆

[scooby0906 in reply to loujigsaw]

likewise. see you soon

[Mavisanne]

Hi Scooby, Welcome. I too have been diagnosed only this year and am interested in learning what I can to help deal with the PD. I live in Rangiora and am starting to get to know others with PD in the area, maybe we could get together with others PWP in Rangiora, Cust, Oxford area. My phone: [phone], I would be happy to receive calls after Monday.

[scooby0906 in reply to Mavisanne]

Hi Mavisanne, I will call you next week. Have a good weekend.

[Hidden]

I'm here as my mum has PD and I want to support her.

[scooby0906 in reply to Hidden]

where are you and your mum based?

[Hidden in reply to scooby0906]

We're in coromandel peninsula nz

[mekewero in reply to Hidden]

hi,I'm in Tauranga, hows things with mum,has she been told wot stage she is..how bad PDis.?

[Dana51]

Hi Scooby, I was diagnosed in April 2013 and the last two years have been full of ups and downs. But finally three months ago I decided to start participating in exercise classes run by the local Parkinson's support group. I wished I'd discovered the need for a certain type of exercise earlier. What a difference it has made. Hope others have discovered it too. Best wishes on your journey. I live in Hawke's Bay.

[scooby0906 in reply to Dana51]

Thanks for the info on exercise classes. Prior to diagnosis I was extremely fit and healthy. I am still active but struggle tremendously with energy and strength. I am very interested in doing classes specific for PD people and will be looking into this very soon. Take care and best wises to you.

[Dana51 in reply to scooby0906]

My husband and I went to a presentation recently on PD and exercises given by Julie Rope of Rope Neuro Rehab in Auckland. She is passionate about exercising for PWP. Her motto "No challenge, no change" inspired me to re-start my exercise regime. Go to ropeneurorehab.co.nz/ and you'll get all the info you need. She may be able to help with contacts in your area.

We have a local physio here in HB, Marya Hofman (personal trainer specializing in corrective exercise and functional fitness - teamcoach.net.nz/), who takes our local Parkinson's exercise group each week. The exercises are varied each week and the group has increased since she began taking the classes. She has extended this to provide FitBox sessions in her studio for a group of six of us in a trial situation.

I found exercising in a group situation and getting to know other PWP a challenge at the start, but well worth the effort. No challenge, no change.

[scooby0906 in reply to Dana51]

Thanks for the info Dana

[Laus4785 in reply to Dana51]

Hi Dana, just wondering what sort of exercises these have been? Is it a group that does tai chi etc? My mother hasn't been to this but we are hoping to get her to go in the next few weeks. We are in Wellington though so it will be a different group to you.

[Dana51 in reply to Laus4785]

Our exercise group is assisted by Parkinson's HB and is held each Wednesday. Our Physio instructor is Marya Hoffman of Team Coach at Plus Rehab in Taradale. She gives us a variety of exercises, extending our capabilities each week, incorporating yoga, tai chi, ball handling - testing all of our co-ordination issues. And makes it fun along the way. The class size continues to increase.

Marya is also privately taking six of our group who wanted to challenge themselves further, and she is taking Fit Box classes at her studio. We are all feeling the benefit of completing the exercises three days a week.

Personally, I'm enjoying the challenge of the additional exercises and the Fit Boxing, but I also have an Exercycle at home which I am now motivated to complete 20 minutes on the Exercycle each morning. Normally I would just read my kindle while I cycle, but Marya challenged me to do 90 seconds of normal speed and 30 seconds of "hard-out" cycling (which isn't that fast for my little legs). It is a challenge but I definitely fee the benefit. As Julie Rope from Rope Neuro Rehab in Auckland says "no challenge, no change".

[nik12]

Hi

i was diagnosed last year @33yrs old

[scooby0906 in reply to nik12]

Hi Nik . Thanks for posting. I find it hard to accept that this condition affects young people like yourself. It's very early days for me so far and each day is a learning curve. keep in touch and let's try and keep this forum alive. scooby

[Hidden in reply to nik12]

Hi Nik & Scooby and everyone else reading,

I was 38 when diagnosed. Nearly 3 years ago.

Life is pretty good right now, I'm lucky as part of my job actually seems to help me as it works both sides at the same time. The more active I am the better to a point, just need to not wear myself out as fatigue makes things worse. Can be a challenge with a 6year old and 2year old.

All The Best!!!

[scooby0906 in reply to Hidden]

Thankyou for your very positive message Rigger. From what I have learned so far, positivity and exercise are key to dealing with this and it looks like you have both. Best wishes to you, Scooby.

[Nicky1970 in reply to Hidden]

Hi

My husband is 50 (diagnosed 3 years ago) he will not talk to anyone, join groups, try anything. It a difficult situation. We have 3 children 2 grown up, my daughter says its like a constant elephant in the room. His on on Madopar, movement in beginning to slow down. He is angry. I don't blame him. But i'm scared too and not sure what to do to help?

Any ideas, anyone?

[DaMoJo]

Thnx for your message Scooby.

[racerCP]

Hi Scoopy,

I have little to say as you embark on this new journey except for you to engage and have no fear, knowledge is everything and nobody dies specifically of PD.

[scooby0906 in reply to racerCP]

thanks for your positive message Racer

[mekewero]

rigger, the site /profile says you are 11k away .Te Puke?..me

Tauranga

[Hidden in reply to mekewero]

Just outside TePuna

[mekewero]

yep i.m ok 4 now ,ive only been on site 4 a week .gr8 posts from affected people

[Hidden]

HI I live near dallas tx usa

have had PD 9 years and now i am 63.

I do crossfit 3 to 5 times a week

It does wonders for me and i love the group

this is a typical work out of the day (wod)

run 400 meters

jump rope 150 times

30 squats

back squat to max you can do i can do 265 pounds

then the true (wod) varies everyday

21-15-9-9-15-21 reps for time of:

225 pound Deadlift

this means to lift it 90 times as fast as you can

check out it here

crossfitnz.co.nz/

check out it here

[scooby0906 in reply to Hidden]

wow, I couldn't do that. I find my muscles ache too much if I do too much exercise. so I tend to keep it moderate.

[Hidden in reply to scooby0906]

i could not do it at first

just worked my way up

the wod is adjusted for every ones fitness level

[nik12]

I wonder if u hv tried facebook pwp groups, there is nz ones set up by pwp

[scooby0906 in reply to nik12]

Thanks nik12, I will have a look. Although I am a bit nervous of liking or joining anything on Facebook yet as I have not told everyone about my PD.

[Hidden]

Heres our burb.

my mum is 72 and has had PD for 3 yrs.she was doing ok until a year ago when the worldwide supply of Disipal (Orphenadrine hydrochloride) was depleted and no more was being made, the pharmacy changed her to Orphenadrine citrate which is a completely different salt to dispal and was useless.

still taking madopar 4 times a day , her leg was starting to lift and throw her balance so her Specialist put her onto benztropine mesylate which helped her arm tremor but not her leg, plus the side effects of benztropine are awful, extremely dry mouth and mental confusion. He also prescribed her clonazepam for her physical nightmares and anxiety, which has helped her sleep. he also reduced her Madopar down to 1 tablet 3 times a day.

We saw the specialist recently and he said her leg was due to dystonia and that if the Benztropine still wasnt working that she could try Amantadine , but mentioned that it could cause terrible mental deterioration.

Gosh what to do???

We need to find a Specialist in Hamilton as her Auckland specialist is retiring. Waikato is more convenient for us.

We thought Christopher Lynch sounds like a good choice.

If anyone has any advise or experience with any of the above, please reply. thanks

[Anna55 in reply to Hidden]

Be careful with Amantindine, it did not agree with me at all. Insomnia, oral thrush, paranoia to name a few. And when I came off it I was much worse than before.

[Hidden]

my mum has recently started taking Amandatine and have had no problems with it so far, plus it's helping her diskinesea . So it's a win win so far