Hi Jane -
Nice to meet you … sorry to have been so long replying. I’m glad you’re getting over the depression: as I posted to another person, I’ve been lucky enough never to have suffered from it - but judging by the experiences of several of my friends, it must be one of the hardest things for anyone (let alone PD sufferers) to deal with.
You make some good points about exercise and physio - I haven’t met my PD nurse yet and I’m sure she’ll help me customise a plan when I do - but meanwhile I’m walking as much as I can - and I also have a rowing machine … rowing (like swimming) is really great exercise for both the upper, and lower body.
Good luck with your programme!
Vic
I might be wrong, but I think you’ll find the Parkinson’s nurse will not be able to give specialist advice on exercise and physio. You need a referral to a neurology physiotherapist. It’s worth asking for the referral from your doctor or neurologist. There is a book "The New Parkinson’s Treatment’ by Melissa McConaghy, and the ‘Parkinson’s Warrior’ website, which give you an idea of the exercises involved.
I expect it depends on the area you’re in. Where I live the PD Warrior type classes are organised by the PD nurse team, but they’ve had to do it privately as the NHS won’t support them (even though they’ve done the PD Warrior training) because they’re not physiotherapists.
Interesting. Here in Devon, the Parkinson’s nurse is unobtainable. I’ve only spoken to her once, when I just happened to bump into her at a Parkinson’s UK event. She gave me her phone number, but when I rang and left a message, she did not return my call. She said that she had never contacted me after my doctor made the referral, because she’d been off sick, but by that time I’d been diagnosed for eight months, so I basically wrote her off as useless.
I’m not impressed by the NHS at all round here. I had to wait four months to see a neurologist, who told me she did not think I had PD, and ordered an MRI scan and blood tests. I had to wait several weeks for the MRI, then when the tests came back clear, I was offered another appointment for September. I was going to be away in September, so I tried to alter the appointment and was offered another in November. By that point it was going to be nine months from when I went to the doctor saying I thought I had PD and wanted to go on levodopa.
So, I switched to private medicine, made an appointment at the nearest Nuffield (a 90 minute drive away) and got diagnosed and a prescription for madopar in a fortnight. I’ve stayed with the private consultant, because I don’t want to have to wait four months to see the NHS consultant every time I need to adjust my medication. That would be a nightmare.
However, the NHS neurology physiotherapist was very good and I benefitted from her advice immensely. Nowadays I attend the exercise classes run by the local Parkinson’s UK group.
Certainly the NHS does seem very over-stretched in neurology. I also had 9 months between my first visit to the GP and the final diagnosis and, similarly, the first neurologist I saw sent me for an MRI scan (and also told me that she didn’t think I had anything serious). I didn’t even suspect PD myself until I saw a 2nd neurologist 6 months after the first one. That neurologist said she would refer me to a PD nurse but I didn’t hear anything for more than 6 months and then self-referred - it turned out the neurologist hadn’t ever made a referral.
I’ve just made another appt to see the neurologist - more than 1 year on. She said I would be sent an appointment to see her every 6 months but it just hasn’t happened.
The PD nurse was great though at my first appointment but again none of the things she said she would do have happened except for the referral to the exercise class. That’s fine though as at least it keeps me in touch with her.
Hi vicdavies
Thank you so much for your kind words as people like your self give us as parents the support to carry on, you really don’t know some times it’s the small things what people say or do in life which can make a difference and let me tell you, you really have made us feel good and put a smile on our faces with your kind words, all the best with your granddaughter and just remember take each day at a time, and if every you need anything please do not hesitate to contact me . Many thanks Raz 
I have found that sometimes the most help i get is from people i dont know
Especially when i stumble / trip or fall
Others have looked on but then someone i have never met will hold out a helping hand
They will never know what that means to me and just a simple thankyou is more than just a word to me now
1 Like
One thing about human relationships is all too common … we can often habitually relate in an unchanging way with the people we’re closest to, regardless of the changes they are facing - in their health, or financial circumstances - or anything else. We tend to judge them, simply because we have known them for a long time. Of course, this is a two-way problem - because they view us habitually too. It’s a particularly British thing, maybe … and a ‘male’ thing right round the world - for sure. How many of our friends and relatives know as much about what we are going through with our PD, as do our correspondents on this website? That’s because most of us are bad at opening our hearts and minds to those who are closest to us. It’s nobody’s.fault, I guess … but let’s thank God for this forum - a wonderful channel for openness, understanding and caring - based on our common experience and needs 
Hi Vic
when i was told i openly told my friends and mates
it wasnt long before i found out who my friends really were
within the first week of telling i suddenly lost contact with about half thepeople i spoke to nearly everyday , no more phone calls about popping down the pub, and invites to come round for eats and drinks at my house were either ignored or poor excuses
as the weeks turned into months a few more were lost
out of all the friends i had before telling them i only have about 12 true friends that stood by me , come round drink my beer because i no longer can
they dont crowd me but im always invted and welcome by them
but when i found this forum i now have so many more , most i will never meet but they give me strenth and encouragement to fight on
so far ive only meet up with Tommy T1 and his wife Sue
A complete stranger they made so welcome
Tommy is like a brother now
babswood , is like an older sister picking on me ( not really ) but i love them both dearly
the care and friendship i have recieved and felt is immense, everyone without this condition could learn something from them
well thats enough rambleing for now
take care my friend
keith
OH is in hospital. The GP, the one who failed to recognise the early symptoms of the life threatening double pneumonia last year, also failed to organise a repeat blood test as infections levels, CRP, were rising. I insisted on one earlier this week as OH was really poorly. An unrelated appointment at the hospital yesterday, and the results of the CRP blood test, resulted in immediate admission, as the level was extremely high.
A professor at the hospital at 7pm last night ordered a CT scan, an ultrasound and other tests for today; ‘a delay would mean a deterioration’, I was told. As of leaving after visiting this evening, none of the above had been done because 2 doctors did not know why or what was required.
My OH has a mild to moderate sepsis right now and they ARE DOING NOTHING!!
Maybe they are just waiting for it to get worse and we all know the outcome of that possibility. I am beside myself with worry.
1 Like
That’s bad news indeed - so sorry! … but thank goodness you’re there to speak for her… is there any higher authority you can go to with your concerns?
I can’t say that any of my friends or rellies have given me the cold shoulder… but then, I never had as many as twelve to start with! Of course my jaw tremor must be a bit disconcerting - and some of them did find it more difflcult than others to look at me or even know what to say at first …(especially my grandchildren, but I made sure to tell them I was just “getting old and going a bit wonky” … which they accepted quite happily, as they knew I was “incredibly old already” and (to quote) I was still “the same old grandpa, whatever!”. God bless 'em !! 
alot of my so called friends didnt and still dont understand
its like im contagious
but my true friends still stand near , not to near in case i fall
my kids are great , they are 18 and 23 both constantly taking the mick but for me that helps
ive found that people my kids age understand this condition better than others my age
ive been out with my boys and their friends and treat me no diffrent as before
people our age could learn from them
Hi Keith you are so lucky to have as many friends as 12… I would be lucky to get to nearly half of that.
Im off to citizens advice on tuesday
In regards to friends
Id rather have 5 friends that stood by me as a friend than 50 that only pretend and leave me at thr first hurdle
1 Like
I could not agree more
Me too … but I’m lucky not to have any friends leave me so far… it’s early days I guess, but I’ll keep my fingers crossed.
Hi Vic , I do understand your concerns being a newy but I too find that when I keep busy I forget my shakes etc I think to myself , its only a shake , I’m not on my own , theirs lots like me and their only a call away , I too had my spine surgery and it failed so have lots of pain like you , I find that talking to someone like you really blesses me cos you too must understand what I’m going through , we have to be there for each other , and to know that we have access to a nurse is also great , they are great to talk to , I’ve had Parkinson’s now for three years , and have had great strength from talking to others with the same problems especially at the group meetings ,God bless you Ray ,
Thanks Ray - what great words! As my symptoms worsen (which they are) I find myself going to great lengths to continue to be as ‘normal’ as I can with my friends and rellies. I know ‘positive thinking’ is good - but I do sometimes wish I could stop worrying about upsetting my nearest and dearest, and just open my heart to them, tell them how scared I am, and have a good cry on their shoulder. Maybe I’m going to have to do that one day soon - but meanwhile the group meetings might give me a ‘safety valve’ - as they have obviously done for you - so can you tell me where and when they meet? (I’m in Wolverhampton - is there a group that meets near me?)
Thanks again for writing - I think God is blessing us both! 
- Vic.
Hi Vic , so good to hear from you , pray you’ve had a good nights sleep , and a peaceful day , mine, as been hectic , today is shopping day , the parkinson’s website will have a list of the nearest group in your area and will also have a contact number , I live in Rotherham , I find that the Parkinson’s UK magazine is a great help , do you get it? Its great value and a good source of information , I’ve added you to my prayer list so you will always be in my thoughts , the number of Parkinson’s UK is - 0808 800 0303 , God bless you ,Ray