Diagnosed 18 months ago


#1

Hi, I am recently diagnosed with Parkinsons (18 months ago) I had made a routine appointment with my doctor after noticing a slight shaking in my right arm, I was referred to the local Parkinson clinic for tests … the tests involved touching from nose to finger … birdy song tweets and walking in a straight line etc etc … all rather silly I thought …after only 10 mins of this … I was told I have Parkinsons … I was gutted ! Torn between thinking the worst and also disbelief and what to say to my wife and family? I asked for a scan but was told they are too expensive ?? I was told the prognosis is good as I present with only a slight a tremor and no meds were offered at this stage … I have had 2 appointments since … not the best …I’ve never seen the same person twice … So. I get on with life as normal i.e. I have spent this Summer walking, hiking, swimming getting about as usual with no problem… I play guitar and sing for a living … I have a great social life and no trouble with any activities … a slight dexterity loss in my right hand when playing guitar but hardly noticeable just now … I don’t really want the world to know or feel sorry for me or treat me any different but inevitably a few friends have asked me about my shaking hand and I have told them it’s Parkinsons …I just get on with life and live it… I have decided not to attend the Parkinson clinic for now as I don’t have any faith in them at all, I find this forum far more helpful … thank you for your posts … please feel free to comment . Maurice :wink:


#2

Hi @MauriceUK1

Your experience sounds a bit like mine except that my neurologist did agree to refer me for a scan so I was able to get a firm diagnosis. It really annoys me how difficult it is to see the same person twice. I always feel I have to start explaining from the beginning to each different person I see.

It’s good to hear that you’re getting on with life as normal - I try to do that too and am lucky that my symptoms don’t really prevent me doing the things I enjoy. I’ve done a lot of amateur singing and still enjoy that but probably a different style as I mostly sing classical music.

All the best

Clare

ps am intrigued by “birdy son tweets” test! How does that work?


#3

Hi Clare, Thanks for your reply :wink: Birdy song tweets …lol that’s my take on it …lol i.e. putting your hands in the air and making a bird beak with your finger and thumbs … click finger and thumb together as wide and as fast as you can . try not to laugh or sing the song :wink: if your right hand tires or slows … its a sign that something is wrong … The neurologist I saw ( a professor) actually said to me " you have Parkinsons " grinning as if I should be pleased then he added " I knew before you came in the door" he wasn’t the most convincing or helpful man … :wink:


#4

Ah, yes, I did that test too (but on the LHS for me). I also felt the neurologist was a bit smug about being able to give a diagnosis so quickly and her letter confirming the diagnosis felt a bit like an “I told you so”. She was generally nice though so perhaps I’m being unfair!


#5

I think your quite right “smug” is the fair word, I felt like I was tricked and branded, when my consultant smiled and said he knew “before I came in the door” and. “I will have to notify the DVLC if you drive a car” and “Don’t worry we are here for you” as if??? It hadn’t occurred to him that the devastating thought of having Parkinsons… telling my wife and family and friends c/w possibly losing my driving licence and hence my living as well … all in the space of 15 minutes !! noooooo sorry to disappoint etc but for now I am fine . loving life and learning as I go … lots of help out there and on forums like this … bring it on… I am a fighter :wink:


#6

Hi Maurice,
My GP diagnosed Essential Tremor so I was able to tell my wife that is annoying but not too bad. I didn’t let myself think that it might be PD.
Eventually I had an appointment with a neurologist who did tests very similar to yours. She told me it was “most likely” PD, not Essential Tremor. She told me why and suggested that I have a look at the Parkinson’s Australia web site for usefull information. (I am in Australia). When to start medication was left up to me.

I accepted the diagnosis better than my wife did.
I tend to read every users manual I get so I searched the on-line secondhand bookshops and ordered a few PD books.
One I received is “The Parkinson’s Disease Handbook by Dr Richard Godwin-Austen”. Its 20 years old but easy reading. My wife didn’t want to read it but one day I came home to discover that she has read it in one sitting. Amasing for her with any book.
She has peroused some of the other books but we both agree that it is the easiest to read.

The more I read, the most comfortable I am that the diagnosis is correct and the more accepting we are of the outcome.

Knowledge won’t stop the curse, but it does help you live with it, or LIVE in spite of it.

To “celibrate” we have booked a cruise next May/June. Do the fun things while we can will be the new motto.

Jim


#7

Hi Jim,
Thanks for your reply, I guess no one wants to think they have PD, I just wasn’t happy with the way they diagnosed it in my case … after the initial shock I realised there are a lot worse things in life… I count my blessings and use this good time to make the most of it, It’s a journey and were stuck with it … I don’t read too many books on PD but I will check that one out as part of my journey, I want the book on how to slow down the progression of PD or reverse it … it hasn’t been written yet … live in hope :wink: Maurice :wink:


#8

Hi Maurice.
You seem so positive which is why I’m replying to you.
This is my first ever message on the forum.
I was diagnosed on 29.01.18. At the grand age of 45.
I had an inclination it was probably PD. But I went to see a consultant on that day with my sister accompaning me. I too did silly tests and did the ‘birdy song’ (without my awful singing) :joy:etc. But I was expected blood tests or scans. So wasn’t expecting a diagnosis on the day. So although I was thinking along the PD line it was like a punch in the face when he said ‘ I believe 99% sure you have Parkinson’s’
I had to lift my sisters jaw from the floor!
I don’t remember much else as was in shock.
My sister was crying on way out. I told her not worth crying about. It is what it is and others have fat worse diagnosis from neurologists. We went and had two very large glasses of wine to help the shock (any excuse) :joy:
My two children took it ok especially my daughter. Who said ‘oh well, you’ll be fine’
My husband took it badly more because he didn’t understand it and felt guilty as he’s always been able to protect me and felt like he wished he could take it away.
Sorry for long message but it feels god to get it out.
I’m a hairdresser and although I can still do my job I’m noticeably slower on the left hand and some days tremor is worse. Luckily I’m right handed. So hopefully won’t cut an :ear: off :joy::joy:
I feel positive and am just getting on and living my life.
Also signed up to start PD warrior classes in January.
All the best Maurice x


#9

Hi, Becc33 … yep … it’s pretty much the same for all of us … we hoped for better but got a punch in the face :wink: but hey …that’s life ! we soon adjust by getting on with our normal daily routine …you have a great positive attitude and that’s the way to go forward, keep on keeping on as they say :smiley:…good luck with the PD Warrior classes and live love and be happy … Happy everything :wink: many thanks, Maurice :wink:


#10

Hi Maurice,

I was diagnosed with PD earlier this year, I knew something was wrong about 18 months ago when I noticed I was limping slightly on my right side. Went to private physio thinking I had pulled some muscle - I am a painter /decorator by trade, but didn’t seem to help. Went to GP and and she was going to send me to NHS physio thinking I had back problem when she asked me to sign referral form - that’s when I happened to say “oh my writing seems to have shrunk and got untidy” That rang an alarm bell for her and she said she’d better send me for MRI scan for possible Parkinson’s. I was shocked to say the least. Anyway scan was looking for vascular Parkinson’s and didn’t show up any problems.

Saw Consultant Neurologist 6 months later and was told I probably had Parkinson’s but as no definitive test available they would monitor me and see how I go. Like you the next time I saw another locum neurologist and they put me on medication - Sinimet - 25/100.
In the meantime I have carried on my life as normal, I think I am very lucky as my symptoms are very mild, I am still decorating but I no longer do house exteriors as I occasionally have balance issue. I have no on and off periods with my medication, I take tablet 4 times per day. I do get tired at the end of the day but generally at the moment I am coping well. To see me the only indication that something is wrong is if you were to watch me walk in front of you, but I can live with that. I read some of these stories and I am nervous about the future, I hope I stay as well as I am for many years yet. I am 58.


#11

Hi, being diagnosed with PD is a shock to us all that’s for sure …they are good at diagnostics and useless at helping or curing P.D… it’s like they haven’t a clue how it feels to get that news in your face … I read that 4 out of 10 people diagnosed with PD don’t actually have it ! No wonder I was in total denial for a while… purely because of the way I was diagnosed !! it’s interesting to know you had a scan and it didn’t show anything … I was told a scan was too expensive and wouldn’t help ? anyway I just do like you do … I get on with life :wink: no meds for me or anything… as I am told they wouldn’t help me much just now …so I put up with a r/hand tremor, its a bonus that the symptoms are mild… I hope that continues for us both :wink: I don’t worry about the future too much . lets face it life can change for anyone! I just make the best of each day, I exercise more… look after my diet and count my blessings…
Good Luck my friend …:wink:
keep working… enjoy life and …Keep the faith :wink:


#12

Hello,sounds like me too,I was diagnosed in January this year(2018) I too get on with life,I’ve been given a double whammy,I have a kidney problem alsoI have sleep apnoai and have to wear a mask over my nose to keep my throat open,so I have to live with this too,back to Parkinson’s,I’ve only had one appointment with the Parkinson’s nurse since being diagnosed,she told me nothing new,only changed my meds,don’t know why cos I 'm still the same,right arm tremors,also my legs and feet are a bit like ballet dancers at night,kind of doing pirouettes all night in bed,it even gets on our dogs nerves,cos he growls sometimes,but apart from all of this I’m OK,good luck to everyone who has Parkinson’s and can sleep all night,bye.


#13

Hi, thanks for replying, you have a lot to cope with there I am glad you are ok … I really hope things improve for you,
cheers, Maurice


#14

Hello, this is the first time that I have posted to this site, so please bear with me re- spellings and topic. I was eventually diagnosed in Nov. 2013. I have had a tremor in my left hand for as long as I can remember but only went to the Dr when I got back from a shopping trip to New York. The customs officer at Newark airport wanted to take my fingerprints but after I’d knocked her off of it’s shelf four times she let me go. Much to the relief of those in the queue behind us. I was a PE teacher in another life. I have 3 offspring ages 41;39 & 36, I’m divorced but have been with current partner for over 30 years. He’s pretty good and wants to help me. The only problem is that I am very independent and work on the premise that if I want help I’ll ask for it-I know I’m a miserable cow and I know lots who would like help. I’ll stop boring you now-but there is football on this evening so I’ll probably be back later.


#15

Hi @ojs,

A warm welcome to the forum.

I’m sure you’ll receive some friendly responses from our members soon, but in the meantime, you can always check out our website for an array information that I’m sure will be useful to you. You can find it here - https://www.parkinsons.org.uk/

Best wishes,
Reah - Forum Community Manager