Hi and help!

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21

Hi again.

My local hospital is North Devon (Barnstaple).

Although I'm still waiting for a neurology assessment, I did see an orthoticist last week at the hospital's physio dep.  That was a pleasant surprise.  I had low expectations because of what happened after I broke my foot in 2014.  Then, I wasn't offered physio by the hospital.  After several months I was still walking badly so I asked my GP to refer me .  I got an appointment a few weeks later but the physio I saw was a jobsworth who didn't even examine me.  He just gave me a lecture on how I didn't need physiotherapy and if I wanted to do exercises I could download them from the internet.

This time round, though, I was examined by a team of two and they immediately offered to get some shoes made for me. This is a huge relief.  Since the accident my feet are different sizes and the odd way I walk now makes shoes rub in odd places.  I have spent a small fortune trying to find shoes that are comfortable, and my feet are covered in corns and calluses.  I'd been considering paying for shoes to be made, but the cost was eye-wateringly expensive.

They also examined the way I move and made some comments.  I walk better when I'm thinking about it than when on automatic, which suggests my brain is not getting the message through to my leg.  But, the problems I've been experiencing turning and getting out of a sitting position are actually worse when I'm thinking about what I'm doing.  In other words they are a result of my anxiety and lack of confidence rather than an actual deterioration in my condition. 

Just being told that resulted in an immediate improvement.  I'm still having difficulty turning, but my ability to get out of a chair has improved a lot.

Thanks for your comments.

I'm seeing my GP again next week.  I'm going to ask her to refer me to NHS chiropody.  That's just a cost saving measure; I'm currently paying £23 a month.

 I'm also going to ask for a referral back to an orthopedist. That might be tricky, because I've asked her before and she didn't think it was worthwhile.  But, the fact is that, even if I have Parkinson's, that doesn't explain all the problems with my foot.  I've lost some sensation in it.  It is no longer the same size. And two and half years after the accident it is still painful.  She doesn't think an orthopedist will be able to do anything for me, but I'd like to hear that from the horses mouth.

I'm also going to ask if there is a falls clinic or equivalent she can refer me to, or maybe that is not necessary now that I'm seeing the orthoticist.

 

22

If you have trouble you can insist she refer's you to a hospital of your choice sometimes a firm approach is required after all that is her job to look after your health I put my foot down when dealing with a dr whom does not seem to understand. Lucky for me my GP is fantastic let me know how you get on  BB xx

23

An update. 

I had a neurology assessment yesterday.  The neurologist confirmed what I have noticed myself, that my left hand is now affected as well as my left leg.  But she does not think I have true Parkinson's.

She was vague about what she does think I have.  She referred to me not having Parkinson's and my having 'atypical' Parkinson's. She suggested my symptoms might be caused by fluid on the brain, which will show up when I have a brain scan. She suggested that I might be helped by dopamine.

When I got home I looked up fluid on the brain, and what I read suggested that it can be treated by draining the fluid, but the doctor did not mention this.

So now I'm waiting for a scan.  The hospital doctor also said that my gp should refer me to physio, and seemed surprised she had not already done so.  

I'm going to be on to my gp this morning to get the physio referral, and I'll ask for OT as well.  My GP is a very pleasant woman, but she doesn't seem to do anything unless pushed. 

Feeling confused, worried and fed up.

24

I can only echo everyone else in firstly assuring you  that if you have Parkinsons it is different for all, and you may be OK for a long time yet. Meds are continually improved. I was finally diagnosed 2 years ago, and at least at the moment manage fine. We are active and my husband and I look after young grandchildren all week.

Try not to worry. Hopefully you will at least know for sure if there`s a diagnosis or not. Exercise helps. Keep moving!

25

Thanks.

 

26

Not surprised you are confused and fed up why prescribe a parkey med if she does not think you have PD.

These drugs are not to be taken lightly they are powerful drugs some giving some parkey patients powerful and complex side effects. However I agree with Frances a diagnoses of PD does not spell dome and gloom some progress fast like me and some slow ( this is the case with most people ) my advice don't take meds willy nilly only take what you need to. Don't stress that is the worst thing parkey people can do, live your life, but most important love the life you live and be happy.

 

Regards BB xx

27

The neuro's written report,  when I received it, wasn't quite as I remembered her oral advice.  Basically, she doesn't think I have Parkinson's, but might have something else, such as normal  pressure hydrocephalus or had a stroke.  She doesn't mention trying me on Parkinson meds in her report.

I'm having an MRI scan on 2nd July.

I've also had an orthopaedic assessment this week.  My left foot is considerably altered by the accident three years ago.  The physio I saw said there isn't much they can do, apart from the fitted shoes already ordered and specialist neurological physiotherapy.  She gave me a couple of exercises to be getting on with while I wait for the physio referral.

Meanwhile, I've actually improved somewhat.   Recently I've been very busy: I stood in a byelection for the local council and was elected.  It has taken my mind off my physical problems and the result is that I'm actually moving with less difficulty.

One of several hypotheses I have for my condition is that I have a 'functional neurological disorder' which has been triggered by the number of accidents I had and the damage to my foot.  I came across this website on functional neurological disorders.

Alternatively, I actually have Parkinson's, despite the neuro's opinion.  My dad had Parkinson's and Lewy Body dementia, but never had a tremor.

Or thirdly, I do have normal pressure hydrocephalus.  This is giving me nightmares.  I'll be glad to get the MRI scan over and done with.