Hi and help!


#1

Hello. 

I'm female, 64, retired.

I'm not diagnosed with Parkinson's, but I've made an appointment with my GP to ask refer me to a neurologist because of symptoms I've had for the last two years.   I first raised my concern that I might have Parkinson's with my GP about 18 months ago. At that time my GP did not think I had.

But since then a number of members of my family and friends have suggested that I seek a diagnosis. For my family members their concern is because my deterioration over the last couple of years is very reminiscent of my father's deterioration in the run up to his diagnosis; he died of Parkinson's five years later,suffering badly from dementia. Other friends who work with the elderly also remark on how my movement is typical of Parkinsons.

I feel very conflicted about getting a diagnosis.  On the one hand, it is possible that I do not have the disease.  I broke my left foot quite badly a couple of years ago and I've attributed my difficulty with walking since then to the injury, but it doesn't fully explain my movement problems; my shuffling walk, the difficulty I have getting out of a chair or a bath, my 'restless leg syndrome', or my frequent trips and falls. However, I do not have a tremor, but then neither did my dad, right up to the day he died.

But I'm quite frightened of a  diagnosis because it would change everything.  Our house isn't suitable,so we'd have to sell up and move into a bungalow.  I'm carer for my mum who is 91,and I don't know what to do about that. All the plans we had for our retirement,my husband and I, down the pan.

I'm also very worried about the dementia.  dad had it badly.


#2
Hi Editha, You sound very stressed. Not surprising in your situation. Getting a diagnosis of Pd isn't great but I feel it sometimes takes away the fear of what it might be. Don't make any rash decisions because with physio and medication some aspects may improve. Don't shelve plans for your retirement just adjust them. Keep living, I know that's what I have to do. It takes a while to get used to it and lots to think about. You've made the first step, good luck.

#3

Hi Editha

I don't really feel qualified to advise but I would ask your GP to refer you to a specialist. The specialist will then be able to discuss your symptoms and your concerns with you. 

You may get good news but if not at least you will know where you stand. 

seeking a diagnosis for your symptoms will not change whether or not you have PD but will arm you with the knowledge you need to move forward with your life so you can live it.

I understand your concerns regarding Dementia. I am sure it is a concern we all have but having seen the devastating effects first hand in your father must make it all particularly frightening for you! 

Remember you may not have PD and if you do it does not mean it will follow the same course as your father. 

Hope this helps!

Karen

 


#4

Thanks for the replies.

I saw my GP today, and she is referring me to a neurologist.  Her own examination did not suggest Parkinsons, but I am reminded of my father who was not diagnosed for years because he never had a tremor.  At first his mobility problems were attributed to his fallen arches, just as mine have been to a foot injury I had a couple of years ago. The GP did note my slowness in getting up out of a chair and my shuffling walk.


#5

Hi Editha

I'm glad you're being referred. I must admit that my G.P. didn't think i had PD either. I do have a tremor but he was convinced I had benign essential tremor. But he did refer me so I got my answer in the end! I am obviously not glad to have Parkinsons but having got it, I am glad I know!

Have you noticed and difference in your sense of smell?

Karen


#6

I have a poor sense of smell anyway, because of sinus polyps and an allergy,probably to my cats.  However, I spent a catless couple of weeks walking in Shropshire in February, and when I got back I noticed that for the first few days my sense of smell  was restored and I could smell oranges and licorice.  So no, I don't think my lack of sense of smell is Parkinsons related.

I'm still waiting to get a date for the neurology referral. My GP  insisted on a blood test first.  But as of two days ago, she still had not made the referral to the hospital.  It  is over a month now since I made an appointment with my GP, and I'm feeling rather frustrated.


#7

You  do  have  some of  Parkinsonisms, in  other words yes  you  have symptoms  but  you  may  not have parky it  could be one  or  more of a number of  problems which make it feel  like  you have it,  my  GP  in my  case  Great Pillock said I had ceraberal attaxia,  sounds  like a Roman Genral  but  it  wasnt as  they died  out  long  ago trying to  build Hadrians Wall  up in my part  of   the  world  , just  could  not hack it in Geordie Land.  So  dont worry  too  much  at  this stage  you  will need  scans  MRI  ,, OR  MUST  REMEMBER  i ????  nope  cant  remember  i  just cannot

                                  Best wihes  Editha  FED


#8

I've now been told that my GP has made the referral, but when I rang the hospital neurology department, they had still not received it, and they told me that when they do receive it it will be at the back of a 2 month queue.  So, by the time I see an NHS neurologist, it will be nearly four months since I first made an appointment with my GP.

In the meantime my husband and I have called a halt to our house renovations, made no travel plans, and I've stopped having driving lessons. My condition, whatever it is, is deteriorating.  I can't do housework or gardening, and I'm going to have to consider using a tri-walker instead of a stick.

I'm going to see whether I can see a neurologist privately.  When we came back to the UK from Canada in 2014 we considered taking out private health insurance. I wish to God we had gone through with it.


#9

  Hello Editha, I understand your worries as you experienced you dad suffering from Parkinson's. There is something that you said..............your dad died of  Parkinson's. I have been told by my specialist and my local help group keep reminding its members of this..............you do not die of Parkinson's, you die with  Parkinsons. 

Remember the medications have improved and there is more understanding of it  probably since your dad died. Don't change plans because of a diagnosis should you find you have Parkinson's. Don't be too quick to make decisions. I had the same thoughts 13 years ago and am still living in the family home and living my life without a great deal of change. Your progression may be very slow. A positive outlook to life helps and time spent with those you love .

I wish you the very best Editha whatever the diagnosis brings.

Maggie


#10

Hello Editha

I'm currently still awaiting diagnosis after 18 months! Had my second DaTscan at the beginning of March (the first one a year ago showing borderline abnormalities).  Called the hospital today to see if it had been reported on but was told there was a backlog of 70 letters waiting to be typed and the secretary had no idea whether I was one of them, so if I haven't heard from her within the next week to give her another call. :(   It's very frustrating!  The twitching and jerking in my body feels more pronounced than it did a year ago (they've ruled out MND thankfully).   I have a very busy job which I sometimes feel overwhelmed by, and whilst I can't afford to give up work, at least a formal diagnosis would give me a starting point for a discussion in adjusting my hours to help me with energy levels.  I guess I'll just have to be patient.  I wish you luck Editha and hope your diagnosis comes quicker.  At least with a diagnosis one can start treatment.   I feel stuck in limbo.  All the best x


#11

Well said MaggieT. You don't die of it; maybe complications that arise,  but they also arise with other conditions.

Editha. you are 64 and have not yet been diagnosed. IF you are diagnosed with Parkinsons you still have many years ahead of you that P will not impact on your life in a great way.We had many good years after diagnosis.

Sorry to be blunt BUT being diagnosed aged  47, my OH, and now having P dementia, count  yourself lucky and stop the worrying until you have a diagnosis.  Yes, now after almost 20 years our retirement plans are down the pan BUT we did as much as we could when we could do it. Do the same.


#12

Had a violent attack of shaking today while I was serving  up our dinner.  I have a neurology appointment on 24th May.

I think I've probably got about five years.  That was how long my dad lived from when he was at the stage I am now.  But he had dementia for the last three. 


#13
Editha, I wish you luck with your appmt. Hopefully you will get some answers. I do feel you are very stressed out and this only makes tremors worse. You're clearly in a situation where you have knowledge of your father's experience and its on your mind. Try to think of today and not too far in the future. Live the life you have. I know this is not an easy task but don't waste any more time thinking of what could be.

#14

  

        Editha

        I know how difficult this time of waiting and uncertainty has been for you. Take one day at a time and be good to yourself. What you need to consider is that you are not your dad. I know that seeing your dad suffer is your experience of Parkinson's. What you will learn is that no one sufferer of Parkinsons has the same symptoms as another. People live their lives, once correctly medicated, and with assistance, well enough. Good days and bad days granted but life will not come to a stop. You will make adjustments and if there is something that you have always done and enjoyed and can no longer do, find something new that you can do. It's not easy, but with help I hope that you find your life is not ruined by this monster. Put the monster in his place and tell him you will not be beaten by him. Bruised, upset and weary probably some of the time. Beaten? NO! 

        I wish you well. Please put what might be out of your mind. Live in the moment and gain joy and peace from the simple things of life that we very often overlook.

         Maggie

        


#15

Hi Editha,

Sorry you've had these symptoms lately and are worried about your progress. It's good that you have an appointment scheduled to discuss your concerns.

If you feel anxious while you wait and want to discuss anything please feel free to call our Helpline advisers on 0808 800 0303 from Monday-Friday: 9am-7pm and Saturday: 10am-2pm.

They will be happy to listen and offer support or information to help you.

Take care,

Edwina

Moderation Team


#16

Hello,

First of all your Dad did not die of PD he died with PD as this illness is NOT terminal a lot of people make this error.

I understand your concern and fears, I was told I had PD at 47 I am now 51 and officially classed as early onsite. Your symptoms do sound like PD i do not wish to alarm you but I must answer your question truthfully. There is now more medications available than there was a few years and having PD does not mean you will get the same symptoms as well. 

PD is very different for all who suffer with her as our DNA is unique to us all. The best advice I can offer is this once you have your diagnoses decide by talking with your PD dr if you need meds now I would guess you do then you must be reviewed at lest 6 monthly with out fail then learn about your condition as their is one expert about PD and that is all of us. We know how we feel we can only articulate this to the medical professionals. KNOWLEDGE IS POWER and with knowledge you can help yourself.

let me know how you go my best wishes to you BB xx


#17

My apologies.  I've tended to post here when I'm feeling panicked, but I'm actually OK most of the time.

I'm actually open minded about whether I have Parkinson's. It is only my left leg affected, and my left foot did have a bad break in 2014. 

If I do have Parkinson's then I am aware that it might take a very different course to my dad's.  Apart from anything else, he was 78 when he was diagnosed, and I am only 64. My dad was a depressed and unhappy man all his life, and self-centred and emotionally abusive to my mother and the rest of the family. He was exceptionally badly equipped emotionally to deal with the disease and the last few years of his life were very difficult for all of us.

His death was shocking.  He was admitted to hospital with constipation. We were told he'd be out in a few days.  But there was no bed in an intensive nursing ward available, so he was in a general nursing ward.  He wasn't given his Parkinson's medication and when he pulled his drip out it wasn't replaced.  Mum tried feeding him water with a teaspoon, but it was difficult because there was no room for a  chair by the bed and it was very tiring for her. I wasn't there and she did not tell me what was happening for several days. When she did tell me (in tears), I got on the phone and made a fuss.  They provided her with a chair and made more of an effort.  But it was too late.  The next day he went into a coma and died that night.

It does say on his death certificate that he died of Parkinson's, and dehydration. 


#18
This miss information really makes me annoyed pd is Not terminal it can make other conditions more difficult to treat. Personally I would have demanded a new death certificate as although progressive and degenerative it is definitely not terminal. Let's concentrate about you now. You need to see a Neuro asap the only way pd can be diagnosed with 100 % success. Is with a dat scan what area in the UK do you live and what is your local hospital called. BB xx

#19

       With you there BB . We die with Parkinson's not from Parkinson's. There is a lot of confusion over this. 

       


#20
Thanx Maggie xx