Coming to terms

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21

Hi BB 

i think I have previously discussed my husbands GPs opinion that he is too young to have parkinsons on the forum but he has really surpassed himself this week. We felt forced to pay to see a neuro after the referral resulted in an appointment 4 months later. Off we went to see the neuro who said that he would complete the paperwork to refer my husband back to the nhs for a Datscan and at the time he said there would be a 4 to 6 week wait. My husband was patient but 6 weeks later after he hadn't heard anything we became a little anxious and contacted the neuro dept who said that they didn't have any record of my husband. I have subsequently found out that the paperwork had been sitting in the gps awaiting authorisation. I have gone absolutely mad with the practice and after some heated conversations with the practice manager have managed to secure a Datscan for 15th February so hopefully my husband is getting closer to answers. He feels so much better having a date for the test. 

Klou

22

Hi Klou

Good on you for giving them hell there are far to many GP's and hospital DR's who dismiss people under 50 when their symptoms point towards PD they are what's going wrong with our health care system along side our governments, quite frankly they are all bit by bit destroying our NHS.

More people need to get a attitude on with them.

I'm pleased your husband has his appointment lined up I will be thinking of both of you on the 15th of Feb,

let me know how you both get on.

Kindest Regards BB.

23

Hello, JUJU --

Your case of PD sounds so much like mine that I wanted to respond to your post.  I also had symptoms about five years in advance of dx, take the same drugs, and have eliminated virtually all symptoms now.  The only difference in treatment is that I took Mirapex first, then Azilect.  And I credit Azilect for helping delay PD's progress.  But the really good news is that I have had this disease not 11 but 18 years!  Keep thinking positive thoughts and exercising -- it is aparently possible to remain in the first stage of PD many years.

Best wishes!

24

 

Hello Klou

Sorry to hear you have had so many problems try to get some sort of satisfactory result for your OH, I sometimes feel you have to shout to be heard. When I was DX I was given the telephone number to contact our local PD nurse, after leaving umpteen messages for her to contact me my physio finally stepped in and got in touch with her to get me an appointment. Also my GP was not at all helpful, he said if I needed to increase my medication to just phone him and he would write a prescription out without him seeing me, so in other words I was self prescribing. He didn't seem bothered.

I just hope you get  better treatment for your OH, keep at them to get it, because as I said no matter what age you are you have to shout to be heard.

Best wishes and hope everything goes well on the 15th February

Sheila

25

Thanks everyone for your support, I said to my oh that general practitioners are always so preoccupied with diet, alcohol consumption etc that when anyone goes to see them with anything that doesn't match the particular government incentive I.e. Obesity, 3 week cough etc. they get overlooked. My husband had been to see his GP with his tremor and he had been completely dismissed. I admit I  am quite forceful so when I subsequently went with him and asked what further action was going to be taken he was quite taken aback. Has anyone seen the article in the mail today which suggests that parkinsons is an emotional condition? I was quite taken aback as it suggests that parkinsons patients were given a placebo but because they thought it was expensive it resulted in improved movement? How disgusting is this? 

Klou

26

   I think GPs are overrun with patients its a challenge just to see one and they don't really have the answers but then you see the consultant every 8 months and the PD nurse every 4 everything takes so long but what can you do is it lack of resources ? WTF does the Daily Mail know, emotional ? that is  depression which is only part of PD with another maybe half a dozen problems. My wife who has PD has slowly gone worse with her condition we are trying some adjustments with her meds but how long will that take ?

 

27

 

Hi Billywhizz

I only see my Neoro every 12 months, the PD nurse only when she can find time, I saw her for the first time in November 2014 and she made another appointment for November 2015! I was DX in 2011 with hardly any backup.So good luck to you and your wife

Hi Klou

I can't believe the comments in the mail, it just goes to show how unaware these people and anyone else for that matter are so ignorant to the plights of PWP with parkinsons have to face. It beggars belief

Sheila

28

Hi sheila

I think that the people who write such rubbish should try an walk a mile in the shoes of someone with parkinsons! 

Klou

29

Hi all I have posted the article from the Daily Mail under DAILY MAIL RUBBISH ARTICLE so everyone effected or close to someone with this condition can see what a load of B******* the paper is showing.

 

BB

Quite frankly how dare they insult us like this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

30

Hi J,

Thank you for responding, I really appreciate it. I do sometimes panic that the effect of the medication will wear off quickly, but your post has made me feel more positive.  Back to the trampoline now then.

31

cool

             Hello Drewster

                                 BLACKHEART   WILL, crush you destroy you wreck all your plans and dump you in the sewer of life, If you let it, as it advances you must be vigilant , you have to learn so much so rapidly or the beast WILL TAKE YOU DOWN, but you dont want that, you are obviously fit, so keep up your fitness progam it will be a major asset in the coming years, I WAS Diagnosed in 99 age 49,thats 10 yrs ago Drew,?? never was any good at maths,and so have encountered the steep, hell no vertical learning curve, and its been a struggle at times, my marrige has been under pressure , now stable,, I could not go on without my lovely  lady so that pleases me, I will also advise the development and expansion of your sense of humour young sir, YOU WILL  NEED IT  believe me, my wife and I are often helpless with laughter , often when BLACKHEART  is turning the srew, I ACTUALLY SHOUT,,,COME ON COME ON IS THAT ALL YOUVE GOT and other things not printable here.

                                   You can do it Drew,im not going to say FOREWARNED IS FOREARMED OR NECESSITY IS THE MOTHER OF INVENTION,  ohh I have, never mind, good to have had this lttle chat its always good to have access to knowledge   DREW.          REGARDS            FED

32

Cheers Fedex, it will not destroy me, fundamentally because I am just way too stubborn to let it!

Mrs Drewster is a diamond, she even sometimes "gets" my often overly dry sense of humour, and while I would be utterly devastated to lose her, I'm very keen to ensure that she is fully aware that if things ever become too-tough, she has my blessing to walk away - this needn't be her fight.

Meanwhile I am investigating all legal avenues to ensure I am devoid of all assets, Blackheart (or as I prefer, the darkness that lies within) will not take away my children's inheritances!

33

Hello Drewster

                   I have used this statement before Drew, there is iron in your words,and you are in this war  now  and being stubborn and also flexible and careful with your resources of mental strength , you will be the enemy of my enemy and so my friend.

                                           I wish you well in the battles ahead

                                                                   FED

34

cool

         A much Goodly Morning Drewster.

                                                   You mentioned in your  post that your Lady is very special, this pleases me reading those words as ,Through Sickness Health is often discarded 1 week after the wedding, I know you know as will your Lady that there is a storm on the horizon Drew and it will test the strongest bond and the strongest Love, this is why you have to  prepare now Drew, go on very special trips, take romantic holidays I suppose the message I am trying to say is do these exciting things, as many as you can Drew,and do them now, make your precious, priceless most special person feel like ,,well the  most special person in the universe, oh I know you will already be behaving in this  way and you will probably be thinking, whats this daft old b,,,,r going on about, but as I said you must create a unbreakable bond my friend, a bond that will not break even under multiple strike, high intensity, high pressure horribleness,( I know thats probably not a word, but its effective isnt it)   yes, or even the EVILSAVAGEWICKEDHORRIBLENESS  (Now thats a word) as I mentioned in my earlier mail, my wife has been under huge pressure and has suffered greatly watching her me suffer as BLACKHEART battered her Husband, well yes I was and will continue to take a battering, but you notice I DID NOT USE THE WORD SUBMISSION Drew , like yourself, am just too stubborn to submit, I will take all known measures to PUTPETERPARKY,, sorry, its a bit of a must be silly, trademark that I must be silly, just ignore me.

                                                Best Wishes Drew,and Lady Drew

             PS MY AVATAR IS A 1/50 SCALE REPLICA OF MY MODE OF EMPLOY, GOOD EH

 

35

Happiness can be found even in the darkest of times, when one only remembers to turn on the light.

(and always carry spare batteries perhaps would have been a good addition?)

36

idea

        Thats worked, new batteries?