Thats great about the pd nurse. As all the above can agree. A good pd nurse is worth their salt! I can talk to mine for over an hour and know she has my best interest. Also the nurse can be an intermediary between you and the consultant.
Hi I’m john , dx 4 year ago , I knew a year or so b4 though there weren’t much to see ( my dad has Parkinson’s) , still blew me , my wife and kids away to be told . I’m still working running a wrought iron business ( hands on ) and my dad who’s 80 is with me . In 2016 I lost my wife and 2 month before that her father moved in who as Parkinson’s and I now look after Alan . I’ve alwats been a keep fit fanatic and completed Wigan 10 k and tough mudder for PUK . My Parkinson’s is challenging but my regime has kept me going , keeping fit being a main ingredient
Hi Singing_Gardener
I love your name - I like singing and have a lovely garden.
I was diagnosed in January and have found this forum to be a life saver. I agree you have to look for support yourself. My diagnosis came via a private appointment with a neurologist and a datscan. I then saw my GP. Nobody has mentioned a PD nurse to me. I am seeing a neuro physio (Private again) and finding this very helpful. I have had chronic arthritis for many years and have been seeing physios every week, and going to the gym - I still feel that most of my symptoms are more arthritis than PD. However, I do find that exercise does make me feel better.
The PD Warrior course is too intense for me, but well worth looking at and I am trying to do some of the exercises. Apart from anything else it makes me physically tired and I therefore sleep better.
I am not generally a joiner of clubs etc. but I do find the Forum useful, and people do reply, and have a laugh on occasion…
Good luck with it all
Knine
Hi Knine
My life revolves around singing and gardening and I feel both are threatened by the PD. I’m hoping the PD nurse will refer me to a neuro physio but have the option of going private with my daughter’s friend who is a PD neuro specialist if not.
I’m also not a great joiner of clubs - very sufficienct unto myself! Really struggling with typing today - my LH wants to do its own thing.
Thank you for your message!
Clare
Hi Clare
I think all we can do is keep on “keeping on”. After all, nothing is happening suddenly. Keep on singing and gardening - do you do both at the same time? If so,excellent on the multitasking front.
Interested to see you mention typing. I have difficulties but put it down to an elderly keyboard. Perhaps I should look closer to home.
A session with a neuro physio will prove very helpful, I’m sure.
Best wishes
Knine
I very occasionally sing and garden at the same time but usually I’m too worried about frightening passers by (or the horses in the field nearby)! I live in the country but on a main road so in summer lots of cyclists and cars with open windows.
I used to be able to touch type quite fast but now my left hand types the letters in the wrong order and my LH middle finger twitches so I double type letters “e” and “d” unless I go very slowly.
Interesting to read about your typing experience. I have never been able to touch type, but, as a pianist, I have been able to type quite quickly and accurately looking at the keyboard. Things have certainly changed recently - I too leave letters out, or type the same one twice. I still think the keyboard needs a good clean. Perhaps it is wishful thinking. My left hand is the one with the tremor but it doesn’t seem to happen when I am typing.
Do continue singing in the garden - I’m sure passersby will actually enjoy it. What is your choice of music?
(Actually, this bit of typing has gone better than ever - you are obviously having a good influence on my fingers!)
Kninne
My left hand is the one with the tremor too but it’s twitching rather than tremor that causes the problems. I used to play the piano reasonably well but haven’t tried recently and was assuming that my LH would also struggle with that. Perhaps I should try though.
I sing mostly classical music and folk songs.
Hi again
Interesting to see that you and I have similar interests. Many years ago I used to teach both piano and singing, ut hadn’t played the piano for ages until the other week.ounded dreadful - so many wrong notes. My left hand refused to stretch an octave. however, I know that I have advanced arthritis in my wrists. I mostly need to wear braces to support them and they are often very painful. I plan to try again when I have a good day. I am sure the stretching is beneficial if I can control the pain.
Haven’t tied singing for some time - i always used to accompany myself, and doing both is difficult, especially as I need some new glasses in order to be able to read the music - the stand is quite high on my grand piano. Maybe mind over matter is what we should be aiming for. What do you think?
Knine
I used to accompany myself on the piano as well but now need to concentrate to hard on either singing or playing so can’t do both! “Mind over matter” sounds good - my singing/playing may be terrible but if I don’t mind then it doesn’t matter…
I couldn’t agree more.
Finally got to see the Parkinson’s nurse today and it was incredibly useful. She gave me loads of information and I finally feel that I have someone to go to with any further queries and a better picture of how to cope going forward. And to top it all she’s going to enrol me in some PD warrior type classes starting a week on Saturday. Am feeling so much more positive after this!
Hi Singing_Gardener
So pleased to read of your PD nurse’s help.
Next week I have an appointment with my neurologist - the first since I was diagnosed after a Datscan two months ago - and I want to make sure I don’t forget any of the important questions I need to ask. I am making a list, but would appreciate any suggestions. Aged 83, I am very unsure as to what to expect in the future, and how I should be planning for any changes.
I am interested in the self management online course and would love to hear from anyone who has taken part.
Best wishes to all
Knine
Hi Knine
I intended to make a list for my appointment this morning but it turned out to be only 4 items long and she covered all but one without me needing to ask. I must admit I’m not expecting great things from my neurologist though. My Datscan result came through last August and all I have had from her since then is a letter confirming the diagnosis and saying she would refer me to the PD nurse but not actually doing so.
Do you have a PD nurse? Mine is going to give me an email address so that I can ask any questions when they occur to me so I think she will be my first (and possibly only) port of call.
I haven’t heard of the self management course so would love to hear more.
Best of luck with you neurology appointment.
Clare
Hi Clare
Thanks for such a prompt reply.
As yet I haven’t been referred to a PD nurse (that’s one of the questions on my list) but everyone says how helpful they are, so, hopefully, there will be one available in my area.
As for the self management course , I came across it on the PD website. They are listed in different areas and also there are some online courses, so it shouldn’t be difficultlt to find one. I must confess that I am not usually one for joining self help groups or similar so I will wait and see how that turns out.
Disappointed to hear that your neurologist wasn’t very helpful. Fingers crossed that mine will do better.
Good luck with it all
Audrey
At least your neurologist has given you a follow-up appointment so already more responsive than mine!
Here in Essex it’s possible to self refer to a PD nurse, which is what I had to do in the end, but I’m sure your neurologist will refer you.