Just diagnosed help!

Pd nurse has referred me to Neuro physio but she said it’s so popular hence the waiting list. I’ve signed up for a 10 week course with the private one for £150. I know it’s not cheap but a lot less than I was expecting and I really wanted to get started.

How often do you see physio? Xx

I’m taking so many paracetamol… hoping to see Dr tomorrow as I think I may need antibiotics. X

Hi Jayne,

Seen neuro physio 3 times and signposted to exercises on the net. I have my daily exercises mostly balance. An asessment was done on balance mobility etc. Should I have additional problems get re assessed then different, extra exercises if required. Happy with that, have a full length mirror just to check doing them right,
Assessment useful on records should I need them to evidence pd status. Would cost for private so nhs good for that as well
Have a look at john pepper on you tube showing how he maintains walking mobility, all concentration of movements, educating himself to walk properly, keeping the neuro pathways active.

Hope you feel better soon, try not to rush things , rest is important too.
keep in touch
Xx

Hi Teehee and Jayne849,
I got assessed for pd warrior type exercise in September. Its private as no nhs one in my area yet. The physio who takes it is trying to work with NHS so hopefully that will happen. I go once a week and try incorporate it into routine a few days a week. As Teehee says you can follow up on YouTube. £150 for 10 weeks is not too bad especially if you get good results. Its just a pity its not widely available. Apparently the llicence to teach pd warrior is a few grand. I do notice the difference when i dont do it.

Hi Anne 123
I was diagnosed about a month ago, although the neurologist thinks I have probably had it for 5 to 7 years. The thing is, nothing has changed. The fact that my problem now has a name doesn’t make it any better or worse. I still feel exactly the same and tend to think that it is my chronic arthritis that is causing me difficulties. I can wear the same clothes, still dye my hair etc. etc. I mention it as and when it seems appropriate, and move on when people don’t know how to respond. At 82 I am somewhat older than you, Anne, but still looking forward to whatever life throws at me. I regard it as a new, interesting challenge. After all, we can’t change what has already happened, so going forward is our only option. Good luck and best wishes as you get to grips with PD.
Knine

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Hi you two D and J ,

Waiting for news on pd warrior so hopefully can join a class its about a 35 mile round trip form where I live.

It is a shame certificate costs so much, maybe we ought to see if any funds in local pd suppport group kitty, although I stopped going to mine as they were a lot older in years and not interested in pd warrior as to be fair , further down the line than me preferring bowling etc.

Blah blah, yawn must go to bed its 3.16 am no wonder I have bags under my eyes and dark shadows. Estee Lauder has a bit of a challenge on with me (other cosmetics are availlable) xx

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Good morning Teehee,
Slap that make up on!
Yes the funding is difficult as each parkinson’s group has different priorities. There is only 2 in our group (which gives us personal attention) but would be better with more obviously. It takes a while for PWP to realise that exercise is key,especially if you’ve never exercised before.
Saying that i need to get my behind to yoga class. Id rather sit on couch with a cuppa but need to follow my own advice!! :open_mouth:

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Hi TeeHee

Sorry for delay in responding, just trying to catch up…

I’ve still got a cold but feeling loads better today thanks. Went for a long walk and did my PD warrior exercises last night so I’m back on it! When do you find out if you can do it? Hope you can get on it soon as I think it will be a game changer… just seen in your next post that you’re joining one 35 miles away. It would be worth seeing if the local group would pay to bring someone in for a couple of taster sessions, then with a bit of advertising there might be more interest.

The private physio I’m seeing says she can’t afford to run just PD warrior as the licence fee is extortionate so she incorporates some of it with lsvt and she’s got 8 people signed up for the next 10 weeks.

I’ve got another assessment in the morning and there’ll hopefully be some improvement in my posture and gait from 2 weeks ago…

I’ve watched John pepper’s videos and putting this into practice… It’s fascinating how you can force yourself to do the movements but they no longer happen naturally. A friend has just given me some walking poles and I’m looking to join a Nordic walking group so hoping that will help too.

I need to embrace this exercise to combat the binge eating I might encounter from the meds, not that I need much encouragement if there’s a cake or two on offer :wink::cake:.

I’m also trying to do as much and get as much info as I can whilst I’m still on sick leave as I’m not sure I’ll have the energy once I’m back at work in a few weeks time…

Well I think I’ve rattled on enough! Speak soon xx

Hi Divine1

How long have you been doing the pd warrior?

I’m lucky that there’s the private neuro physio near me and the NHS in Leeds now deliver PD warrior type classes too. Downside is the NHS waiting list is 3 months. Anyway I’m signed up and really feeling the benefits. The physio let me video her doing some exercises so I can also refer back to them to make sure I’m doing them properly.

I’ll be like a stick insect in no time with all this activity… In my dreams haha

Xx

Hi Jayne,
Ive been doing PD warrior classes continuously since December. I did some regularly at home with You Tube before that. The thing with the class is the physio gets you to push yourself. So if you do a move, think to yourself, can i do better? So its more about quality than quantity.

Hi

I like the class because of the support from others in the group too, tomorrow’s my 3rd one and the following week is the start of a new 10 week course. I think I’ll carry on going even once I’m back at work as it will keep me motivated. My physio said same about quality not quantity…

J and D. Its 35_ roundtrip not local but not too far, at 10 yrs in going to be a challenging but want t to try. New routine will keep to gentler type exercises but need to build up stamina a d strength before I turn into little ms jelly ! Should get on class if room at the back for me, just need the,go ahead. Pleased u ² getting good results. Mobile typing difficult so in touch soon. Have a good week. Xx

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Hi Teehee,
its a bit of a trek for you but like you say give it a try for a few weeks at least and see if it suits you. Anything that keeps you going is good.

35 miles round trip isn’t quite so bad! I’m sure you’ll find it worth it… the support in the class will be great, it’s also a social thing and I’m loving going to mine… Wednesday is now my favourite day :weight_lifting_woman:️:golfing_woman:️:basketball_woman:️:wink: xx

Hello,
I have only just joined the forum as despite being diagnosed
for a year I have been in denial . I haven’t started medication as I’m worried about side effects,
It’s been so helpful to hear all your stories, it makes me feel I’m not alone.
I’m really hoping progression is slow.
I do exercise but probably not as much as I should. How much is enough…?..
Take care all

hi poppy i think we all struggled to come to terms with being diagnosed with pd. but you really need to talk to someone about medication yor local pd. nurse is a really good place to start all the best
Petec

Hi Poppy,
Its hard to come to terms with the change in your life. Take your time. Inform yourself of all the medication available.
Sometimes you can start on a dopamine agonist to help with stiffness and that feeling of normality. Some people start immediately on levadopa. Im afraid it is a minefield and as Peter says try to speak to your pd nurse but do it in your own time.

Hi Poppy

As others have said the best place to start is with your PD nurse. Give them a ring and make an appointment as it helps just talking things through and then deciding on medication.

Another good place to get help is from your local support worker from this site. I met mine for a coffee and she was brilliant, gave me loads of info about therapies, helpline, benefits and tons of other stuff.

As for exercise the advice I was given by the consultant was to exercise at least 4 times a week (total of at least 180 minutes in the week)e.g. brisk walking, cycling anything that gets your heartrate up, include stretching and big movements and continue with any exercise routine you do now.

Hope that helps

Jayne x

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Hi All,

Just been told unable to attend PD Warrior as aimed at people diagnosed between 1 to 3 yrs as this is the time you can delay progression of PD by exercising 4 times a week. This is doing strenuous challenging exercises. I have missed the boat, however exercise will of course improve my mobility and strength, posture etc.
I am a little upset as it was my pd nurse who recommended going knowing I was around the 10 yr mark. Fèel like my hopes were raised then smashed. It was not just the exercise it was the support I needed, just to go somewhere , with other pd people not to be stared at with my right leg and arm tremor when I exercise.
I do not not work anymore as job was really stressful , My ‘friends’ go out to lunch, spa days and I am unable to afford the places we all used to go. My few real friends are working have their own families. My mum is not well , she relies on me to take her to the hospital for appts. goes shopping near where I live but never wants to meet for a coffee.
I go weeks without seeing anyone, just talk on the phone with friends.
No one my age group at local pd group, feel angry bitter and lost my sense of humour. What the hell have I done to deserve this?

Oh and forgot to say, a ‘friend’ who asked me to find out about excercise classes we could go to, is now not bothered. Another let down, she now has a new man in her life. If anyone else bumps into me says " lets go for a coffee sometime" or “I will phone you and we will arrange something”

Whats wrong with people, do not say it unless you mean it ?

Phew! Thats got that off my chest, now got to think about how I can make my life better as the Thelma and Louise option was beginning to appeal.
Bleat, moan moan get a grip !!

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