Anyone had Parkinsons for more than 11 years? I want to hear from you : )


#1

Hello

My mum has had Parkinsons since 2003.  I'd like to hear from anyone who had had Parkinsons for 11 years or longer.  My mum has had various complications (Oesteoporosis and Bowel Removal) but the main problem at the moment is that she can barely walk.  Her legs feel wooden.  Don't know how much of this is down to the Parkinsons (she was starting to slow up anyway) or the strength of her bones not being able to bear weight.

She is on 6 Sinemet a day and 12mg of the patch.

Is this what happens once you have had Parkinsons for a long time?

Any help/ advice/ inspiration appreciated.

Thanks


#2

Hi Londoner

We've just put out information that might help. There's a brand new section on our website and a new booklet on Advanced Parkinson's. You can download the booklet from this website but it is quite long so you might chose to order it instead. It's free to do so. 

Hope it helps

Ezinda


#3

hi londoner     i was diagnosed   in 2003 but have been extremley lucky that i can still do most of what i did before i have had to give up work, everyone with pd is different it is individual to that person and what drugs work for one doesnt mean they will for everyone i am on stalevo 100mg x5 daily plus sinimet cr 125mg and pamiprexol at night i also have the back up of the apogo pen dont know if you have heard of it as i was getting a lot of off times and the pen just gives me a boost until my oral meds kick in its like a diabetic pen its  a fine needle injected into the tummy or arm or leg it really works well for me there is also the pump where a needle is inserted once a day and pumps the medication round the body at set intervels i know a couple of people on it and they swear by it the drug used is apomorphine but as the name suggests it is not a pain killer it might be worth asking your nurse or consultant about it worth a try may inprove things for your mum other than that she might need her current meds reviewed good luck and best wishes susan.                                                                                                                                      


#4

Thank you so much- will ask about the pen!


#5

Hi,   Your topic caught my eye, so here I am.   I've been diagnosed with PD for 14years now and about 3 1/2 yr ago started suffering with very bad panic attacks and anxiety which, at the time, I found ontrollable.

I was looked after by a consultant psychiatrist, did CBT etc. and although I still get these attacks, at least they are fairly under control.

Things were fairly stable for a few years but I have noticed recently that I'm not doing as well i.e. my voice is really soft and people can't hear me;  I'd carry on telling you more but it's just too difficult as it's upsetting.

Just put on my happy face and off I go!!

Casie


#6

What is this 


#7

Hi Londoner I was diagnosed in 2004 when I was 53 and it came as a big shock and it was a while before I could accept it. For the first 7/8 years it did not affect me too badly but as I get older I find that every ailment I get makes the recovery harder and I am that little bid worse afterwards. The illness is progressing faster now and it is very variable. I have good support and most of the time I am able to come to terms with my limitations. Sometimes however when I have the bowel problems, Insomnia and sore joints and can hardly walk I get very down and depressed. However I have recently also had panic attacks and am trying to overcome these. It is easy to say but those of us who have PD just need to take a day at a time and make the best of what  we can do rather than regret the things we can't. I take a lot of medication but mainly stalevo and slow release pramipexole.

 

 

 


#8

hi iwas also diagnosed in2003 iwas interested to read youre article about the pen and pump ive recently done a apomorpnine challenge as a day patient at the hospital i had to come all meds from midnight till after the challenge had been done  i was injected in the stomach untill they were happy they got the dosage correct at about 12noon it finnished and went back to my normal medication i struggled most of the morning coming    off my medication felt very unwell problem i have now i havnt recovered to my original condition do you or anyone else no iff takes time to get back to the condition i was before i stopped my mediction the challenge was done 3 or 4 days ago im rearley strggling is this normall does it take time to recover i look forward to hear from anyone whose been through this many thanks william s


#9

Hi William I have taken part in several studies as a guinea big for research at the Brain Repair Centre, Addenbrookes, Cambridge and each time I had to stop meds from the night before. It was very difficult getting up and having breakfast and sitting in the car for  30 minute drive to clinic. THen I had to perform various tasks 'off meds' as you can imagine it was quite hard. THen I was allowed to take meds, wait an hour and repeat tasks so that improvement could be measured.  I did this every six months for abot 3 and a half yrs but have now stopped as it was just getting too difficult travelling there while 'off' However I never had any problem getting back to 'normal' once I did take meds. I have found that whenever I have any other health problem eg cold, stomach upset I amnever quite the same when it is over. Things have always slipped a bit. Six years ago I had a knee replacement and unfortunately a pulmonary embolism afterwards and I found it very hard to get back from that.It was so awkward trying to do physio when my hands did not work properly holding the walking sticks and as I was on warfarin for the blood clot I was really scared  I woud fall and start bleeding and be unable to stop it. That was a battle especially as I didn''t get my meds on time in hospital. Hpwever I have  now got back to a  more or less reasonable state but I now go off more, for longer and more dramatically than I did before. Hopefully you will recover a bit soon - it may be that there was some other factor eg a  viral infection attacking your system at that time. If you haven't picked up within the next couple of days I  shoud contact  either your Neuro or PD Nurse for advice. It may be the y can jiggle thngs around to make you feel better.


#10

Hi lilly  Was interested to read the above as you seem to be in a similar situation to myself and much the same meds. Last visit my  neuro suggested the apogo pen and wrote to my  GP. However as he had to contact the PD nurse to show me how to use it the two of them (PDN and GP) decided not to give me it as I wasn't bad enough. I didn't push it at the timebut now feel, especially after reading some positiive comments on this forum that I would like to try it. Will be going back to neuro in January and will try to push for pen then.  THe pump has also been mentioned but I was not keen on this idea.  Do you have a pump fitted and is it restrictive or uncomfortable. Would be glad to learn anything you can tell me on the subject


#11

I was diagnosed 11 years ago at the age of 43.  I am still very active and able to work full time.

My legs get incredibly stiff - especially overnight and I can barely walk in the mornings before my medication takes effect.  My ankles are completely rigid and could be described as wooden.

 

The PD makes my whole body rigid during the night and sleep comes in very short spells inbetween the wriggling - but I still manage to lead a full life despite the problems.


#12

Hi Londoner, you don't mention how 'with it' your mother is. Can she speak up for herself? Feed herself and so on?

My mother has had Parkinson's for 12 years or so, and can't do that. She is in a nursing home. My advice would be to keep your mother out of hospital the best you can if she is in the same situation as mine. In my experience, the doctors always want to move you onto 'the next stage' be it a nursing home, a PEG fitted or even death. It's rarely a case of 'Oh, we've solved her problem so she can go back to how she was before'. But again, my mother was never extrovert at the best of times, so can look like she's on her death bed.

As for walking, I used to pull her up the road on a wheelie zimmer, but that all stopped when she went into a home. My advice is to record on a digital camera any footage of her doing stuff that you know she can, so you can present it someone if you need to, otherwise they just won't believe you.

You could try a simple pedal exerciser from eBay for around £20, but otherwise in my area I know of no physio group that encourages the elderly to get back to walking using the same kind of equipment disabled soldiers use, with a kind of hoist and treadmill.

Oh, and in relation to your other query, if your mother is still 'with it' enough to grant you health power of attorney, make sure you get it. Pronto.

 


#13

My OH has been diagnosed, aged 47, with Parkinsons for over 16 years. Some days are better than others and part of each day is bad, BUT, everyone progresses at a different rate, something which is very evident in members of our local group and on a very recent holiday where there were many PWP.

On this holiday one had been diagnosed just a few years and another 8 years ago, both were suffering far worse syntoms than my OH, so there you  go. Everyone is different; you can't say, as per  the first reply to your post by a member of the Admin, team that you need to read the booklet on 'Advanced Parkinsons.' You may need to but may not and I think that that post was illadvised as a frist response.


#14

hi bovril  i am going to start on the pump after xmas the apo nurse is coming to see me tomorow to show me the pump and how to set it up but i will need to go into hospital first for a couple of days till they get the dose right and are happy that i know what to do, the pen works for me but i need something more as i have a lot of fluctuations and the pd nurse said it would smooth things  out i know two people on it and they swear by it i will keep you informed as to how it goes, susan. 


#15

Hi 

My husband has had PD for almost 40 years being diagnosed in his thirties, he was on the Apo pump and penject for a total of 15 years and this served him very well until he had to come off it. The Apo made a huge difference to his life and enabled him to keep active and involved for all those years.

As to your mother's leg problem as you have read everyone is different and progress at different rates, some people do have leg problems in fact my husband has suddenly lost the support of his left leg although the PD is mainly on his right side, he has been xrayed and there is nothing broken so it must be the PD or maybe a stroke but his arm is okay so it looks like the PD.

You need to get her checked out by a Physio and then if she needs a wheelchair they can sanction one, which she may not like but it will keep her safe. The other thing is some of you are struggling first thing in the morning you can ask if you can have a sinimet slow release for over night or take a madopar dispersal first thing to get you going this would be very helpful for people trying to keep working or who suddenly get stuck, but of course you need to discuss this with your doctor or nurse first.

I hope that helps

kind regards

vivian


#16

Hi 

12 YYYYYYYYY Years  . . .

I’ve started a new Forum thread called Music kicking it off with a rather unique way of describing a Parkinson’s journey  . . .

The electronic music album 'Weird Medicine' is the story of my own 12 year battle with the symptoms of Parkinson's Disease and the associated side effects of the drugs and medical treatments.

The album has been produced by me under the tongue in cheek pseudonym DrBolix and is available for download worldwide on iTunes, Spotify and most online music outlets.

Half of all net royalty proceeds from the 'Weird Medicine' album is to go to to Parkinson’s research. For further details visit my website at www.DrBolix.com or hear the album now at https://itunes.apple.com/gb/album/id954855121

Research has shown that Music improves brain function one of the benefits being to help produce Dopamine which is the chemical in the brain that Parkinson sufferers continue to lose as the disease progresses.

As I'm sure you are aware there is currently no cure however there are many medicines that for a period of time reduce the symptoms. However, these medicines come with the inevitable 'may cause side effects’ on the accompanying leaflet hence Track 4 on the 'Weird Medicine' album.

I would add that I am not of course a Doctor and that the pseudonym DrBolix is purely designed to attract attention.

This project could raise some serious money for Parkinson’s research please support the album by (obviously buying it) and/or forwarding this information to all your friends and contacts.

Regards to all and keep fighting

PS you can also follow me on Twitter and Facebook