New boy


#1

Well, I guess some clubs you don't want to join. :-(

First symptoms were minor - nervous habit of rubbing thumb on index finger on right hand, and an uncomfortable tension in the back of my right thigh while driving.

Progressed to "carrying" my right arm instead of it hanging down and quite severe tremors when exercising at my local gym. Then a deterioration in my handwriting, walking with a "flappy" right foot and finally some shoulder pain (though this may not be related). Most annoyingly I'd started to learn the bass guitar and found I simply can't move my right hand quickly enough to progress very far.

Been under the doc for about a year in total as symptoms got worse. Referred to consultant neuropathologist in October, DATscan in December...results just come through and it looks like (or to use my neuro's term "is consistent with") Parkinson's. Feeling mostly relieved by this diagnosis as my own research had me thinking it may be MND.

I say "mostly"..was doing fine until went for assessment by local community care team and presented with literature with an old man on the front drinking from a child's double handed cup. I'm only 48 and it is exactly this sort of infantilisation I fear (already struggling to use a knife). Who designs their bloody literature? :-)

Not impressed with neuro who insists I have a resting tremor (I don't, I only get tremors under exertion) and worryingly that this is a "good thing"..if I don't have one is this a bad thing? Also less than impressed with his letter to my GP that says I'm on 150mg Azilect and letter to hospital prior to scan that says I'm on 100mg Azilect. Actual dose is 1mg Azilect. Not reassuring, so have asked to be referred to someone better.

Been on the Azilect for three months now. Good news is no side effects, bad news is no effect at all; maybe minor improvement in use of a computer keyboard.

First steps on (hopefully) long journey I guess, would like to hear (hopefully positive) stories/experiences from others with similar symptoms to mine. Would particularly like to know if any of the treatments restore function (I'd REALLY like to get better on the bass!) even if only for a short period of time (I'm not deluded, I know it's a story of decline overall, but would like to know if it's a roller coaster or just all downhill). Maybe I could learn the bass part to the Verve's "The Drugs Don't Work"?

Looking forward to replies...


#2

Hello Grey

welcome to the forum. I joined it even before I have my appt with neurologist Feb 23. Hope my neurologist is better than yours. Mine is a resting tremor or finger twitch with stiff ankles. After 60 years of playing tennis I couldn't throw the ball up with my left hand to serve. Thought it was something stupid until my fingers started twitching. I took up the piano 5 years ago so this twitching has really spoilt that. Anyway just wanted to welcome you and hope my experience with the neurologist is better than yours

regards

John


#3

Hi grey

my husband is 43 and is waiting for a Datscan diagnosis. My OH started with shoulder pain and a resting hand tremor and this went on for 18 months during which the ortho said it was muscle fatigue, trapped nerve etc. even now our GP says that my husband is so bit young for pd (not sure what that's about) and the nuero says the tremor is a bit irregular but I will amazed and incredibly relieved if they don't confirm pd. My husband says his arm feels stiff and his usually quite good golf game is now rubbish but he keeps trying. I can't comment on medication but a friend of my mums was diagnosed with early onset pd and he led a very full life, ran his own business, had a great social life and even married a lady when he was in his mid 50s, he passed away recently at 76 and not from pd so I would like to think life goes on just not in the same way.

 

klou


#4

Hi grey area . Welcome to the club you'd rather not belong to - snap !  I was diagnosed in sep after roughly three /four years of symptoms . I am 45  . Unfortunately you will find there are a lot of young people on this forum . I did not realise you could be diagnosed young but in the end I asked the question could it be parkinsons myself . I have all the classic symptoms starting with a frozen shoulder , right foot drag , poor handwriting , stiffness etc . I tend to put my right hand in my pocket when I walk because of the lack of swing and it seems to help my balance . I am on azilect too which has had some effect but know I need something else to function as much as possible . I have been referred to kings because of my age . Apparently they specialise in neurological problems so I won't be seeing my original consultant for a year because I will be seen by kings too . They have mentioned genetic testing . I can't offer much advice to you because I am in very similar position , new to this . What I do know is there are some great people on this forum with a lot of experience and positive stories to tell which is a huge help . If it had not been for this forum I'm sure I would have lost the plot whilst trying to get my head round it . Keep at it with the bass I'm sure with the right meds you will be fine and good for the old fingers . Best wishes . 


#5

Hi Grey Area,

Welcome! I'm 34, diagnosed when I was 33, and am also on 1mg Azilect (which I believe is the normal amount!). Similar experience to you with the Azilect (I've been on it for 5 months).

Totally sympathise with the bass thing - my instrument playing is suffering, but saying that some of my work is still as a musician so I'm very grateful that's still a possibility for the time being. Although it's sometimes very frustrating, I really believe that doing it actually helps... so keep at it! It doesn't need to be fast! Hopefully they'll get you on some more useful medication soon, and you can swap that Verve track for Peter Gabriel's 'Don't Give Up'..!

I'm seeing a different Neuro for the first time tomorrow, so am hoping they might put me on a medication that helps the symptoms a bit more.

Best,

T


#6

Not much about this situation makes me smile, but thanks t_g for the mention of "Don't Give Up"; one of my favourite tracks by one of my favourite artists.

Maddison - I first noticed something badly wrong precisely BECAUSE I had my hand in my pocket...

...stop making up your own punchlines please...

...because my arm was tense my hand was pushing the fabric of the pocket outwards. I had to concentrate on relaxing it...


#7

Hello Gray and welcome to the jungle.  I have been at it for 4 years and had symptoms before that.  When first diagnosed, I gave it no more than a moment's thought because I had seen Michael J Fox (a good old Canadian boy) on talk shows and he seemed OK and he had been diagnosed at age 29.  The first neurologist I went to told me he would not prescribe drugs just yet ("If you were a watch maker, I wouldn't hesitate but you are not so bad off").  The tremor got worse and I got worried.  I went to a second neurologist who prescribed max doses of amantadine (an anti-viral that for some unknown reasons suppresses tremors) and mirapex (that's what it is called in North Am - not sure across the pond) and like magic, almost overnight, the tremor disappeared.  I still had symptoms come and go and my handwriting practically disappeared.  I struggled with it for a couple of years with my wife writing my cheques etc.  The second neurologist (a one-man ham and eggs operation as he described it) referred me to a movement disorder clinic where I took speech therapy and a few phsio classes.  Nothing really changed and I was content.  Then the third neuro decided I should add l-dopa and within a few days my handwriting was back to normal and people could hear me when I spoke.  I am not symptom free but those that linger are just a nuisance - sort of background music that just annoys you but don't upset you.  Things for me are good now.  There is life after diagnosis and I am looking forward to the future as I believe it won't be too long before some brilliant researcher puts an end to the condition.  But even if that doesn't happen, I am remaining optimistically curious.  I stress that optimism and exercise are good for the condition.      You will be OK. 

If you want to know the details of my journey, go to my blog www.wpgchap.blogspot.ca

Best wishes from Canada.


#8

Regarding musicians.  Barbara Thompson Jazz saxophonist was dx with Parkinsons in 1997 and was the subject of a BBC doc.2010 but not currently available, on the i player. unfortunately as it was a fascinating account.

Quote from the blurb:

" Early in 2010, after long delays caused by NHS funding problems, Barbara was at last fitted with a new system of intravenous drug delivery which has enabled her to control her condition to the extent of allowing her (at least for a while) to return to the European stage. Playing Against Time thus ends on a cautiously optimistic note, with Barbara appearing with her husband Jon's veteran rock band Colosseum in an open air venue in Vienna, where she triumphantly belts out saxophone solos to a hugely enthusiastic audience.

Playing Against Time is an unusual and enlightening exploration of Parkinson's disease as seen through music, and about the increasing importance of music and rhythm in our neurological understanding and treatment of this and other degenerative diseases. The film includes important medical contributions from Professor Ray Chaudhuri, Barbara's specialist consultant and a major authority on the disease, and Professor Tip Aziz, the UK's foremost authority on deep brain stimulation."

Food for thought and some encouragement I hope.


#9

Hi Grey Area,

My OH was diagnosed aged 47  and had his 64th  birthday yesterday but with symptoms well before that. So, coming up to year 17 since diagnosis, we are still doing most of the things that we both enjoy; travelling being the most important to us.

Life continues after diagnosis and it  gradually changes over the years but it won't stop us dong what we can while we can, hopefully for many more years.

 


#10

Hi grey,

Do you get the Parkinson's magazine if so go to page 32 it's my story.

Kindest regards BB 


#11

Hi BB

hope you are feeling well.

i haven't posted for a short while. We've been busy decorating and getting new carpets. My OH had to take one of the doors off and we were reduced to tears of laughter when he tried to get the door back on with his shaking hand, you do have to keep a sense of humour! On a serious note my hubby has now had a brain scan and a Datscan so it is just a waiting game for the results, he had this done 5 days ago and they said about 2 weeks. At least I feel as though he is getting somewhere now. 

Klou

 

 


#12

Good morning Klou,

Its good to hear you've been having a good time those moments will be very precious to both of you even if it is just having a laugh when doing some DIY glad your husband has had his DAT scan results taken about two weeks fairly normal. I have just recently had one in London results came back 100% positive PD seems a little weird now even though I never for once doubted my diagnosis just knowing its been proven been nearly 2 years since I was diagnosed .I have had a rough week really my employers are now looking at making 30 people redundant And I'm sure on that list always suspected something One particular woman not my direct manager is trying to get rid of me but won't know till March 19. Would not mind so much I have been there nine years She's only been there three, she is quite manipulative and ruthless anyway enough of me banging on about my problems hope you both okay and the results come through soon as They can One thing I can say Dat scan doesn't always confirm diagnosis it is generally very accurate sometimes some results just don't show up don't know why. Best wishes to both of you keep laughing and hope you're both well. Kindest regards Karen BB ️xx


#13

Hi Karen

i am so sorry that you feel that your job is under threat. Working for the local authority both me and my husband have both been under threat for the last 5 years and I am sure that if my husband gets a positive diagnosis they will be gunning for him again. It is really horrible to be in limbo and I am sure you are fed up with this already having spent ages waiting for a parkinsons diagnosis. 

A lady that I know has Lupus and is considerably disabled and where she works they suggested she might like to retire and she said I have lost the use of my legs not my common sense and they have backed off.

regarding my hubby all may be revealed tomorrow as he called the nuero after his Datscan and asked that he be considered for any cancellations as his employer doesn't want him to drive and has suggested that he may take quite a heavy labouring job which isn't realistic given his shake and shoulder pain anyway they have rang tonight and said there is a cancellation tomorrow night otherwise it would have been april

it is horrible to be under threat of redundancy all of us on our office were told we were under threat and we were told we would be selected on some ridiculous points system and it was horrible because it causes trouble between work mates so I am thinking of you as it is particularly horrible when you feel vulnerable take care klou


#14

Hi Klou,

I really appreciate you come back to me you are a kind lady I know we don't actually know each other but I think you can tell by the words some people use. Good to hear your OH is getting his results tomorrow, As you said it is horrible being under threat and today I have found out like your employer did they are using a points system and sickness is the first thing we are going to be judged on this is my 5th sickness in 6 months and I never go sick without there being a genuine reason. None of which had been down to my PD seems I would have been better of lying, well if I survive this time I will certainly know what to do next time I will just lie & put it down to my condition. Hope the answer is there for both of you tomorrow I will be thinking about both of you,

 

Kindest Regards Karen xx


#15

Hi Karen just back from the nuero and it was as clear as day on the Datscan that my hubby has Parkinsons so waiting over thank god. I know it's not good but I feel quite relieved as this has hung over us for 2 years. 

They are treating his tremor with a beta blocker as other symptoms are quite mild , still able to play golf 5 times a week lol!

To be honest my hubby is relieved as we have a close friend that has had a brain tumour and although it was benign she really went through it and she is still unwell, can't drive and struggles immensely at work. I think he thought he had got that or MND.

And yes, I agree that when it comes to absence dishonesty is the best policy. I am so sorry that you have this uncertainty hanging over you I am certain my other half will be in exactly the same position soon as he is hgv driver and clearly is unlikely to keep that licence. You sound like a fighter I would try the discrimination route are you a union member? 

Kerry

 

 


#16

Hi Karen just back from the nuero and it was as clear as day on the Datscan that my hubby has Parkinsons so waiting over thank god. I know it's not good but I feel quite relieved as this has hung over us for 2 years. 

They are treating his tremor with a beta blocker as other symptoms are quite mild , still able to play golf 5 times a week lol!

To be honest my hubby is relieved as we have a close friend that has had a brain tumour and although it was benign she really went through it and she is still unwell, can't drive and struggles immensely at work. I think he thought he had got that or MND.

And yes, I agree that when it comes to absence dishonesty is the best policy. I am so sorry that you have this uncertainty hanging over you I am certain my other half will be in exactly the same position soon as he is hgv driver and clearly is unlikely to keep that licence. You sound like a fighter I would try the discrimination route are you a union member? 

Kerry

 

 


#17

 hi kerry, 

i understand the relief you and your husband feel as i said when i was first told it was PD it could be worse as i could be dead from a brain tumour. 

yes i am a union member and i am running everything by them but the law is on the companies side as i said and you agree i should have lied. The full time official  is going in on Friday to see if he can push for a better deal but my company are very tight when it come to money and they are not going to give me any chance of suing them they always cross the T's and .the I's.. 

On Saturday I go to a casting workshop in Cardiff so you know you might see me on eastender's or corrie yet. And I have also applied for a job with PUK as a philanthropy manager it's unlikely but they can only say no I said to Colin someone who is trying to get people to donate large sums of money it they can see what the condition is doing to someone rather that just talk about it it just might help trip the balance towards PUK favour

I have recently had contact by phone with another forum member I will PM you my number and if you or you husband want to talk give me a bell. Its nice to talk and the support goes both ways and I wish you both well and good luck to you if your hubby gets laid off hopefully he will get a good pay out.

If you have the Parkinson mag from Jan 2015 page 32 Moving on after diagnoses that's me!!!!!!!!!!

 

Karen xx


#18

Hi Karen 

thanks for your support. I have laughed my mother and her best friend (they have been friends since children and are now seventy) have tried to get on corrie as extras. They are massive coronation street fans in fact I live next door to my mum and I went round earlier telling her about the nuero  visit and she was ignoring me cos she was trying to watch it! If you saw the pair of them you would know why they didn't get the job they would be the most unnatural actors and my mum would have been star struck- we only live about 45 mins from Manchester and I think they went to the original set for their audition. 

Kerry x