Returning forum member

About me Introductions and personal stories
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I haven't been on this forum for a couple of years but I thought I'd check it out in its new format! My 'back story' is as follows: 

I am 50 and was diagnosed in February 2007. I am on Sinemet Plus, Pramipexole, Azilect, Amantadine, and more recently....Topiramate, which really helps with the dyskinesias which I was having real problems with last time I was on here (if anyone remembers me! smile).

About a year ago my GP referred me to a different neurologist at a different hospital because  I was unhappy with the treatment I was getting from my previous hospital / neuro. I was much happier with this new neurologist and the hospital seemed much more efficient than the other one. We discussed DBS as the neuro said that I would be a suitable candidate for it, but I decided to put that on hold for the time being. It was him who suggested that my GP prescribe Topiramate, which has been invaluable to me in controlling my involuntary movements.

So for about a year my Parkinson's has been under control with the dyskinesias much improved. However, unfortunately, for the past 3 months or so I've been suffering from sciatica which has been getting steadily worse, to the point that for the last 2 weeks I haven't been able to stand for any length of time, and it's difficult to find a comfortable sitting position. I'm still managing to go to work, and I'm managing to walk around OK outside (for some reason I find that the pain eases off a bit when I walk outside, but it still hurts when I walk around the house!).

I'm beginning to struggle a bit with the housework because I live on my own with no family nearby to help me with anything. Even doing the washing up is a problem because I can't stand up for long enough to do it (not that there's much washing up, because I'm not in a fit state to cook anything so I'm pretty much living on toast and cereal!) And recently I had to pay someone to do my ironing! My 18 year old son who used to be able to help me with stuff like that has recently gone off to university.

I must say I'm finding the sciatica far more debilitating than the Parkinson's has ever been! My GP has recently referred me for an MRI scan so hopefully I should find out soon where the problem area is and be able to get some appropriate treatment.

So....that's my story so far! smile

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Hi Kathy C ,   I know what you mean with sciatica, I had it a few years ago and luckily it has not returned so far . After getting physio I was told it would eventually go away .... and it did .

Have you looked into getting a home help or carer for a while ?

 

 

 

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Hi singingpete.

Thanks for your reply. I do hope you're right about the sciatica going away on its own eventually!

Re what you suggested about home help / carer....I have thought about that.  However, I don't really need a carer for personal stuff (yet!) but, like I said, I have had to use an ironing service recently, and I could do with some help with other housework too.

I'm not sure how all that home help stuff works  -  I presume it goes through Social Services -  but I'm assuming that I wouldn't qualify because I'm working and I have savings. So basically that would mean that it would be down to me to find a house cleaner privately. And having helped a disabled friend do this a few years ago, I remember what a nightmare it was!  

So I think I'll try to manage for as long as I can.....

smile

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Good morning Kathy

And a very warm wellcome upon your return to our much improved Forum. I dont know if you have read any of my posts re Duodopa , this device is life changing ,I had it fitted in march and it has improved every aspect of my life ,I a 98% MORE MOBILE and although it still needs a bit of adjustment I could not do without  it ask your consultant about it you may get lucky ,as I said it has a few glitches to sort out  , for instance it  can make the Dyskinesia worse if you use the boost button to many times but I try to avoid that if I can, the best thing is it helps you to manage PD  which is a good thing . I am going out now as my beloved is in need of a coffee ,and there is a exellent coffee shop nearby,so once again wellcome Kathy if you need more info about Ddopa let me  know , my email address is available,

                                          Kindest Regards

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Also I forgot to say Ddpa also cured my severe joint pain

                                             Fed

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Hi Kathy and Fed,

I address to both of you because there are points of interest in Feds reply.

First to Kathy.........my wife did care in the community (mobile care). She gave this up in favour of working in a residential care home. There is too much unpaid time travelling from one client to another and with the extortionate price of petrol these days, the mileage allowance hardly covered the expense of running a car. If you get a carer from a firm like the one she worked for, it is expensive. They have to cover office staff and other overheads. Payment is means tested. You may be able to get assistance depending on savings.

They tell you to save then try to take it all back. Seems unfair to me.

However if you look around some people do this sort of work privately. It is cheaper and if you get experienced carers, who have decided to go it alone, you tend to get a cheaper and very good service (dependant on carer obviously). If you go down this route check out references with existing clients first.

I keep telling this to poeple....contact age concern for help. They are very good in our area. I won't go into Social Services because my experiences (not personal issues) left me shaking my head and wondering. No doubt some do a good job. Maybe I had to deal with the wrong ones, or their work load was far to great to be efficient.

Sciatica can go away by itself. Mine hasn't (if it is in fact sciatica). Like you I can't stand to wash up or do anything manual for more than about ten minutes, without having to sit down. To put it mildly it is agony. The relief when I sit down is like heaven.

We are all different so this is not likely to be your condition. I think mine is aggravated by too much hard work in the past.

In my case it is pain management. I was also advised to loose weight, which I did to no avail. They also gave me exercises, which made matters worse. So what do I do?........I struggle. I take pain killers sparingly and try not to abuse them.

Scans are useful, unfortunately they don't show everything. A chiropractor once told me I had soft tissue damage. CT scans do not show muscles or ligaments clearly so I'm told.

My PD makes me walk funny due to left leg being affected. I wonder if my gait affects my back pain. I would think it probably does.

Hopefully you will get a positive result.

I have a friend who is going to go to a pain clinic. I am waiting to see what results that yields.

Fed.... I was interested to see your comments on Duodopa. I had not heard of this. I get a lot of joint pain.

I also wonder about the future. This is good news. I looked it up on the net thanks to your comments.

I was only recently diagnosed, so as far as PD goes I'm a novice. It is now obvious I have had it for a long time but all sorts of other issues masked it. Since diagnosis so much is falling into place.

News of things like Duodopa are very helpful

Orpheus.

 

 

 

 

 

 

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HI Orpheus, Have you tried a TENS machine to control the pain, might be worth trying smile

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Hi Kyloe,

No I haven't tried TENS. I have a vibrating heat pad which helps when things get bad.

I might try TENS, my wife's aunty swears by it. Knowing my luck it will probably blow my socks off and give me double vision. Nothing ventured nothing gained though. A faint heart never ****** a pig. My wife says I shouldn't use that expression......so does the pig.

Apologies in advance for my bad taste and ignorance. Only naughty people know what the blanked out word is anyway.

Thanks for the memory jog, very much appreciated.

Orphy