Coming to terms

About me Introductions and personal stories
1

Aged 49, generally fit (some would say very), healthy eater but do enjoy a few beers - not like the heady days at university, but probably not quite within the current guidelines either.

I trained for, and completed the Etape du Tour (http://www.letapedutour.com) on 20th July 2014. Basically, it is an organised event, much like the London Marathon, where you turn up and do a mountain stage of the Tour de France within defined time limits and with basic mechanical support along the way.

Training for any such event is hard, and when I was banging out intense intervals (100%+ of HR Max) my right arm would shake, quite violently and certainly uncontrollably ... I just put it down to getting on a bit, and certainly didn't want to consult with the doctor since you need a medical certificate to take part in the event.

Increasingly, my right hand side became "lazy" (I have to concentrate to swing my right arm when walking for example) and simple things like taking stuff off the stove and tipping it became a bit of a struggle so I went to see the GP mid October.

GP felt there was possibly a trapped nerve between the vertebrae in my neck and referred me to a neurologist via private healthcare scheme I'm fortunate enough to benefit from through work.

I saw the consultant on Tuesday 28th October, and after some hand-eye co-ordination tests, observations of motor skills, and examination of the joints, the consultant dropped the bombshell that while the symptoms were very minor, they were also very definite, and I had early Parkinsons. I felt completely hollow, like he'd ripped open my chest and torn my innards out - probably mainly through naivity to be fair, it just sounded so terminal the way he delivered it. We discussed drugs to treat the symptoms, but I've never taken anything unless I feel on death's door, so for now am rejecting the "opportunity" to have them.

Some combination of anger, grief, frustration and disbelief means I haven't told my wife yet - I will, but just need to get my own head around it all first (hence I'm here - help!).

I know I need to change my thought processes to be more positive, and turn the "being devastated by PD" thought processes into "living with PD" - however long any of us live with any condition, ultimately only WE can impact how WE let it affect how we feel on the inside, and I know which I prefer.

I still cycle, and will now change my choice of charity when I enter events, from cancer research (which took my mother aged just 60 in 1998) to PD related charities, and make sure I cycle that bit harder, longer and more frequently to give whatever I can. 

I can almost face myself in the mirror and admit the condition now, without welling up, so I'm getting there.

 

2

Welcome to the forum Drewster

The feelings that you are experiencing are  much the same as what i felt when i was delivered a diagnosis of Parkinsons last year aged 47 , . I had noticed for a few years that i had a tremor in my left hand and did go to see my gp who thought it was down to me being anaemic, a couple of years passed and i started to feel very stiff and achy when i got up from bed and from the chair  agan my gp was not concerned and thought it was joint problems related to my thyroid condition, then last year i again went to see my gp with a painful left shoulder and my tremor was becoming more noticeable and i had a feeling like i was shaking inside , all my gp said was it could be something neurological  and mentioned essential tremor but did say she was not convinced as i had a resting tremor , i did a little research while waiting to see the neurologist and two conditions kept coming up essential tremor and parkinsons , my gp already ruled out essential tremor so parkinsons was in the back of my mind when my neurology appointment arrived after a few tests the parkinsons diagnosis was delivered and although i was  sort of expecting it  , it was still a shock i sat there and just could not say anything  all i remember saying is ' i am to young for parkinsons'  i remember the nurse who took a blood text asking me if i understood what the doctor had told me i was so shocked  i felt like i was on a emotional rollercoaster one minute i was ok the next i was in floods of tears .

It took me  a while to come to terms with the diagnosis , i think it was more difficult for my children as i was diagnosed in August and my mother was also diagnosed with Parkinsons in the September so my family had to accept there mother and grandmother being diagnosed almost at the same time

Give yourself time to get your head around things but i will say if medication is offered i would seriousley consider taking it has it can make all the difference

There is plenty of support available on the forum  , and i found the literature from PUK very helpful both to me and to my family as i gave them the literature to read after i told them .

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Hi Drewster

I think we all on this forum felt the same way as you did when we had the diagnosis of parkinsons, so you were not on your own. I'm sure when you confide in your other half she will give you all the support she can and help you to come to terms with the diagnosis. 

Good luck and regards

Sheffy

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Hi drewster . I was diagnosed two months ago . I'm 45 . I have nursing background so asked neurologist if he thought it was Parkinson's and he said it was high on the list . I have symptoms for a few years and had varied treatments medication which didn't help really . The main problem was a frozen shoulder which I now know pwp often present with this . I didn't know then . It wasn't until I began having trouble walking that I wondered if the two were linked . I asked two doctors and they said no . I began googling and then realised I had many of the symptoms difficulty writing ,stiffness,rolling over in bed . Despite this it was an awful shock . Like you I contemplated not telling my husband at first and when I did tell him he was as upset as me and wished it were him not me . He has been so positive and this has helped tremendously . He always sees the cup half full anyway . Tell your wife . Like my husband said if it is that we will deal with it . For better or worse and all that . I have told my nineteen year old son and he was great . My twelve year old daughter knows I have a problem with movement . I have told close friends and family only as I want to keep working for as long as I can and don't want to tell everyone my business . I have always been a very private person anyway . A couple of people at work know but I work for myself now so no issues re telling an employer . I am taking azilect which is supposed to be neuro protective and help symptoms - some benefit . If I have to take something else I will because it is so important for me to keep active and carry on as normally as I can . This forum has been a great help to me . There are some really positive people on here that can share their experiences . Some have had Parkinson's for many years and leading an active life . I am still getting my head round things it takes time doesn't it ? The fact you do a lot of exercise is great too . That seems to be a real biggie . That is something I am concentrating on  . I asked to be referred for physio straightaway so I know what specific exercises to do . I have seen neuro physio twice now really helpful . Have been referred to sports therapist and having hydrotherapy soon . My very best wishes to you . 

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Hi drewster. Im new to the forum as its taken me a while to be able to discuss pd with many. Ive been diagnosed with pd for a year although i had several symptoms for e few years. It takes a while to get use to the idea of having pd. I found it frightening and devasting. Crushing my dreams and future plans. I felt guilty for myfamily as well for upsetting them. However you become more and more accepting and use to the idea. It hasnt really gone far from me, i know its there, raising its head every now and then but im not so scared any more and ive read loads. You must tell your wife. Women pick up when something is wrong and read something else into it that maybe completely wrong and then you will have double trouble. Best wishes sunnybear.

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hI Drewster I was told by my physio not to ride my bike, but I carried on any way we know our own limits , no point trying to hide pd I found it hard talking about it, tell a stranger first, Wish u luck

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Still haven't got round to telling my wife. I feel like I am the protector of the family, and part of my coping strategy is (publicly at least) to stay strong.

Will get round to it, just need to be cofortable enough to explain it in a sort of "so what" kind of way.

No drugs yet, so need to really research the "Why Vs Why-not" arguments... obviously drugs wouldn't mix well with not telling anyone either.

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Hi Chickenlegnd,

 

Cycling is actually very good for Parkinsons.   Just google  "cycling for Parkinsons" and  whole load of websites willl pop up.  Also try "nancyclist"for one persons experience    If you are a cyclist you wll know what you can do.  There's a You tube video showing a man who can hardly walk who can cycle as long as someone can give him a shove at the start and catch him at the end.  Likewise running often  easieer than walking for PWP's

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It's winter, so most of my pedalling is indoors now until March (though I do usually get dragged out on a few insanely cold winter rides ... -8 C last year and that was COLD) 

I've absolutely no plans whatsoever to stop until such time as I am simply unable, seems a good charity fundraiser too with events galore countrywide. The Etape du Tour is a great bucket-list tick, and I wouldn't put anyone at all off training for, and doing it. That said, this year looks far from easy ( http://www.letapedutour.com/ET1/us/the-route.html )! I have loads of training material if anyone does  sign up - though do check with your doctor, as they have to sign a medical form stating that they know no reason why you shouldn't.

Has anyone got any views on resistance training (weights) and whether this too can be beneficial?

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Hi Drewster and others

 

I was exactly like you when I was first diagnosed. I came out of the clinic stunned. I thought parky was an old people's disease and only consisted of shaking a bit. However the consultant said try to look on the bright side it could have been MS or MND  which would have been much worse,  My daughter had got married a few months before and I remember when I was dancing afterwards I kept stumbling as if my foot stuck to the floor - I just put it down to alcohol. However afterwards my right arm started losing strength and walking got harder. I told only my husband and daughters at first and of course the DVLA as required by law but not my employer or friends.  I didn't start meds straight away and as a result my leg got weaker as I wasn't walking properly and I needed to go for physio and learn to walk again after I did start them. Also as a resultl of that I needed a knee replacement on my right side. Once I did start the meds I was much better for a long time and worked for another 3 years (I was a legal secretary) but when the firm I worked for relocated 14 miles away I decided to take early retirement rather than add the stress of driving miles extra each day. I could have worked for longer but am glad I retired when I did as it gave me time to do some travelling and spend time with my grandchildren while I was fairly fit. As warned by the neuros the meds became less effective as the years went on and now I seem to take dozens of pills to feel halfway normal. I have gradually come to terms with the illness but it affects everyone differently and you can't  foresee what's ahead. Some patients don't get too bad others seem to be really in a bad way. I try not to think too much about the future and make the most of my good days. My husband and I recent;y took a 12 day cruise to Scandinavia and Russia visiting 6 countries and it was quite hard but Iam so glad I did it. Some friends drift away once you can't be as active but true friends still keep in touch and as I still have my driving licence on the days I feel good I can get out and about on my own and other days my husband will drive. My advice would be to tell your family but as the neuro told me this is good news - you will not die of Parkinsons you will die with it. As I said there are worse things out there. I felt almost ashamed and embarrassed at first but why should we?  Have just recently joined this forum and finding tremendous support and encouragement here. At least we all know what each of us is going through. Will await your posts with interest.

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Hi Bovril good to read your post . As I've said before I think I would've gone mad if it wasn't for the help and support on this forum . I am new to all of this and trying to keep positive and active . I am still working full time and tomorrow meant to be going on a study day - one of those cpd things . I am not going as I have not felt very well today . Had hydrotherapy yesterday and my walking seemed better afterwards but I knew about it today . Had a job getting out of bed and getting going . Went shopping later today to get a couple of Christmas presents and struggled walking . My right leg hurts and I am constantly having to say heel toe to myself which in itself is wearing . Felt quite upset when I got home and frustrated . Feeling sorry for myself ! Probably didn't help that washing machine broke down and problem with boiler too . Was getting stressed over that ! Tomorrow's a new day ! Waiting for hosp appt for kings to come thro not seeing my neuro until next oct because of that . Was supposed to get appt thro from pd nurse but that hasn't happenned yet . Saw her in sep and she said she would see me in four months - no appt thro yet . Don't know whether to chase it or not as didn't find her very supportive . Feel like I've just been left to get on with it . 

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Maddison,

Sorry for not replying sooner, and gutted to hear you feel left to deal with it all alone ... really hope it was just a bad day. You are "allowed" to feel sorry for yourself, but do try not to dwell on the negatives, having had relatives deal with depression, it can be a dark road to tread - find all the positives in your life and concentrate on them (the golf balls so to speak (see footnote))

I remain "in the pd closet" so by definition have to deal with it on  my own and via anonymous internet forums for now. I will fess-up when I've come to terms fully, or better, with the darkness that lurks within!

I hadn't played golf for a while because of the back and lazy right hand side, but given the diagnosis, and realisation that it isn't likely to get better, I managed 18 last weekend and plan more of the same tomorrow ... neither pretty nor competitive, but good to be back outside.

THE JAR OF BALLS

A Professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.
So the Professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.
The Professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous “yes.”
The Professor then produced two glasses of beer from under the table and poured the entire contents into the jar, effectively filling the space between the grains of sand.
Life is just like this Jar
“Now,” said the professor, as the laughter subsided, “I want you to recognize that this jar represents your life. The golf balls are the important things–your family, your children, your health, your friends, and your favorite passions – things that if everything else was lost and only they remained, your life would still be full.
The pebbles are the other things that matter like your job, your house, and your car. The sand is everything else - the small stuff.
“If you put the sand into the jar first,” he continued, “there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you. Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18.
There will always be time to clean the house and fix whatever’s broken. “Take care of the golf balls first, the things that really matter. Set your priorities. The rest is just sand.” One of the students raised her hand and inquired what the beer represented. The Professor smiled. “I’m glad you asked. It just goes to show you that no matter how full your life may seem, there’s always room for a couple of beers with a friend.”

13

Hi Drewster thankyou for your lovely message and meaningful footnote . 

I have had a nice weekend . Met up with two of my closest friends on fri for a meal . Was not looking forward to going but was glad I did . They have both had their share of health problems and keep positive . It helped talking to them although I felt a bit emotional . Took my dog out for an hour today and felt better for the exercise and getting out in the open air . 

Have got my appt through for kings in feb so that's good . Hoping to be able to hang on in there on just the azilect until then and speak to them about meds . Got my appt through for pd nurse for April . Could not believe that . Saw her in sep and she said she would see me in four months ! I find it hard to understand how someone can be newly diagnosed and then not seen for eight months not even a follow up phone call . Perhaps as I have nursing background myself and its not how I did things . 

How have you been ? I wish you would tell your wife or confide in a friend . I know you will do when the time is right for you but I don't like to think of you dealing with this on your own . I have only told a handful of people myself . You have this forum to turn to whenever . We can all support each other . Take care . Thinking about you . 

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Friends are always good, particularly those uglier (on the outside) so you can feel like you're looking good - alcohol works too (though drink sensibly kids, right) and has the same effect, I look much better after several pints.

A good friend was diagnosed with pretty advanced cancer last week - his likley path from here forwards depends on an operation early Jan to dig it out and run some tests, so my rather advanced listening skills are to be put to a full and thorough test when I take him out tomorrow night... beer, undoubtedly chips, and possibly even a Kebab might be in order.

We don't choose the cards we're dealt, so no point beating ourselves up if we feel we're looking down on a 7-2 off-suit (Google poker hands)

Would you believe the sun is shining - seems to have been absent for a little while before today!

 

15

Finally out of the PD Closet, having "fessed up" to Mrs Drewster last night.

3 monthly check up confirmed little to no noticeable progression.

16

Hi Drewster . I am glad you have told your wife . Hope you are ok . Good news re recent  check up.

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Hi Drewster,

Glad you have told Mrs, I don't know how I would cope without my family's support.  I was diagnosed almost 6 years ago after suffering symptoms for 5 yrs prior.  I thought I had arthritis and after watching someone on T.V. portraying a PD sufferer I realised I needed to see the GP.  Everyone told me I was too young to have PD - I was 47.

At the start I took Azilect alone and then the specialist added Mirapexin which i took for 5 years.  I was finding it difficult to walk,dragging my foot, sticking to the floor so recently I have had Madopar  added.  I feel fantastic.

If you can manage on no meds. that's great but don't feel bad if you have to take something to help.  I also have a fantastic physical therapist who helps me to keep my joints supple, muscles strong, and improve my balance and co ordination.

This forum helps me to understand that I am not alone and I am in awe of how strong people are.

 

18

Hi drewster

my other half is 43 and is waiting for a Datscan re suspicious tremor, shoulder pain and arm stiffness. The biggest problem he has had has been quite chronic depression and I understand that this can also be a symptom of PD. I have suspected that he may have pd for about 18 months but have largely been shunned by the medical profession until his tremor became quite pronounced when resting. We have openly talked about this and I know that he really values my support I am glad you have told your wife as no one should face this alone.

One of the things that my oh really fears is losing his licence as he is a hgv driver and of course this could cost him his living at a young age but we also have a close friend that has been recently diagnosed with lung cancer in his early fifties so we do try and keep things in perspective. 

My husband plays golf and had has been off 9 until his tremor and arm stiffness but he perseveres. He also does resistance weight training which he feels really helps. Initially his arm shakes really badly after training but the next day the tremor is usually greatly reduced, sometimes so much that you can hardly notice it so I would give it a go.

Klou

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Dopamine is a "reward drug" released to make you feel good, so it's not surprising depression is common amongst PwP if he's diagnosed, hopefully there'll be medical solutions that work for him.

I'm a little scared of losing my licence, though don't feel (and neither does the neuro) that there's any reason I should - it would force me to ride to work (15miles each way), as I'm not aware of any powers "they" have to take away my bike, so it's just another one of the "deal with it when it happens" items on the list!

 

20

Hi all,

I was dx in June 2013 I currently take Madopar 6 x 62.5mg and 5 x Mirapexin 700 microgram. DX at stage 2 now at stage 2.5, my leg is affected to the point it drags without my stick I get hip pain and nerve ending pain for which I have another medication in fact I am on 10 different tablets per day (hypertension & Vertigo) + PD. Still work full-time & ride an electric bike I call this the B**** as that helps me fight this. This B**** will not win I wish you all good luck.

 

Kindest regards BB