Diagnosed 14 years ago. It’s been a while since I last posted, but I’m so disappointed I had to write something. My drug regime was Madopar, Opicapone , Rasagiline, and Ropinerole. For pain I take Codeine, amitriptyline and paracetamol. Because of severe Diskynesia I stopped Rasagiline and Opicapone, with the instruction of my consultant. Just for your information I had DBS implanted 2015,
For a while now I’ve been struggling with freezing, really bad loss of balance and pain. My speech isn’t great, so my husband phoned the Parkinson’s nurse for advice. He was told that there is not another drug available that would help me and I could start the Rasagiline if I wanted to even though it didn’t help me. He was told if he couldn’t cope, to go to Social Services. That was it! No support whatsoever. It seems as if I’m left to my own devices. Sorry about my moan. I’m sure the nurses do their best, but what do I do now?
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Good morning maweejackie … So sorry to hear that you are having so many problems.
It is difficult for me to know what to write. Life has not been kind to you with the terrible cards you have been dealt. Sounds as though you have a good husband.
The only thought I have is maybe to pay to see a different Neurologist. I’d suggest a new NHS one but I’d imagine the wait would be excessive.
What “support” do you want? We all want a cure but that isn’t available yet.
I attended my third Neurological Physiotherapy session yesterday. There are only
2 of us doing the the once a week 6 week course. Yesterday there were two “Parkinson’s therapists” an MS helper & a volunteer.
The session is over an hour long & I feel there is a lot of interest in me. One of the ladies had me lie on a couch & examined my legs & feet. Like you my main issues are mobility, balance & freezing.
She was asking whether I could feel my legs & feet. I said I could & we discovered that my toes & feet were very sensitive to touch. I could easily say which toe she was touching & whether she moved it up or down. I was right every time. This was the opposite to what she was expecting ie little or no feeling in my lower extremities. She was at a loss as to what could be done for me. Yes it is frustrating.
I have Atypical Parkinson’s & Neuropathy. I am on Sinemet [3 x 2 pills a day] which I find excellent & likewise Amitriptyline [20mg a day taken at 7pm].
I have used the social services & found them very helpful but of course on the non medical side.
I hope things improve for you.
Best wishes
Steve2
Thanks for your reply Steve2. Of course I realise there isn’t a cure yet, but it would have been nice to get a little positivity from the nurse. The session you attended sounds good. Did it help you in any way?
One thing I didn’t mention was the hot sweats I get. They happen at any time and my hair is soaking. I mentioned it to the neurologist and he said to go to my GP. I went to my GP and she said it’s a Parkinson problem!! Hey Ho !,
Hi 
Beeing sent around in circles is frustrating.
Lost count of the times I had to put my foot down…
Hubby had DBS many years ago.
This was later complemented with an Apomorphine pump.
Hes doing ok with that setup.
Have you discussed Apomorphine (not to be confused with Morphine) with your neuro?
P.s.
Regarding your DBS.
How are the batteries doing? When were they checked the last time?
Hi Annaa. Thanks for your input. I was tested for Apomorphine a while back. From what I remember I wasn’t suited to it. As for my DBS I’ve had a battery change 4 years ago , which is supposed to last 15 years. I see the DBS consultant in May.
Did they also check for the Duodopa gel pump?
Yes. We discussed that also. Thanks for the suggestion though.
Havent quite run out of pumps quite yet 
There is a new medication Foslevodopa-foscarbidopa offered by the Nhs since Feb 2024.
https://www.parkinsons.org.uk/news/new-treatment-parkinsons-made-available-nhs-england#:~:text=Foslevodopa-foscarbidopa%20(also%20called%20Produodopa,with%20Parkinson%27s%20expected%20to%20benefit.
Good evening maweejackie … Yes, I have found the Neurological Physiotherapy sessions very good indeed & help me a lot.
My Neurologist has left the NHS & there has been no replacement. I have seen no one in 6 months.
My Parkinson’s Nurse I saw 6 months ago & I am seeing him again in 3 weeks where
I expect nothing new will happen … “Keep on taking the Sinemet, see you in
6 months time”
My GP’s do not wish to get involved in anything regarding my Parkinson’s or Neuropathy. It is not their field they say. There is nothing they can do.
So the only contact I get with anyone to help with my Parkinson’s are these Neurological Physiotherapy therapists.
I find it very reassuring / therapeutic to actually demonstrate the difficulties I have with mobility.
We do about 15 different exercises & there are at least 3 that bring on the freezing
I go through in day to day life.
One of the therapists examined my legs & feet & was surprised at the feeling I had in my legs & feet but the rigidity in my muscles.
So I got a lot from the hour long session & I feel that what I am doing will help my mobility. Also they are clearly interested in me & helping me improve.
Best wishes
Steve2
Good morning Steve2…
I’ve been reminded by my husband ( my memory isn’t what it used to be ) that i’ve been to numerous physiotherapists, including neuro.physios…
The last one came to my house, showed me some exercises and ‘disappeared off the face of the earth’.
You seem to be lucky with your therapists.
Regards
,
Hello maweejackie … You were diagnosed 14 years ago & I was diagnosed about
9 months ago [although I’ve probably had it 6 years or more]. Clearly you are further down the road where Parkinson’s leads us than I am.
I think we have to want the “help” that is out there. Maybe in 10 years time, if I’m still here, I will be as cheesed off as you are. Parkinson’s is good at wearing away any optimism we start off with.
We do need a positive mental attitude.
Best of luck to you.
Steve2
It’s really hard. One of my husbands consultants (he is now under the care of the geriatric consultant as well as the neurology one) said when my husband spoke to him about being depressed (he has had PD for over 10 years) that it is a really rotten disease so of course he will feel down. He got a prescription for an anti-depressant which seems to take the edge off. Have you tried an anti-depressant?
One thing that has changed since hubbie has started being since in the integrated geriatric clinic is that the care there is much more holistic and frequent as he is being seen once a month. Could you see if your hospital has such a clinic?
Thanks for your post. I am already on anti depressants, mainly for pain. I didn’t realise I was sounding so depressed in my post. I just wanted to let off steam. Isn’t it funny how one feels so normal, and then the next minute so forlorn.
That’s good news that your hubby is finding the geriatric clinic helpful.
Regards
Hi maweejackie i was Diagnosed in 2010 and your letter sounds just the same as what I am going though. I can not take or up my meds any more, I do excise’s every morning, used to do Tai Chi / Line dancing / green bowling ect 2 years had a fall due to PD now Pd has deciced to show me who is boss. On Wednesday I see top women of PD so I am going to ask her where do I go from here? but I aready know the answer Physio / keep moving/ ect ect we are all in the same boat (so to speak) Parkinson’s no real diagnosis/ no cure/ when you ask nurse/GP /doctor I have this problem??? do you think it’s to do with my PD Hummmm’m well it could be? I know they all try there best but it so frustrating when you can never get an answer.
Hi Mary1947.
You’re right, it is extremely frustrating. It’s kind of therapeutic to know someone else is going through the same as me. My voice is failing me, like everything else, so it’s difficult to converse with people. I find the forum a great help in getting feedback from others. Take care.
Good morning mary1947
In case you missed it may I suggest you take a look at this link re exercise - it may help.
Tot
Hi maweejackie,
I am sorry to read you had a bad experience with a Parkinsons nurse.
My regular nurse is amazing and she always calls back. I would suggest calling the helpline 0808 800 0303. Tell them your story and ask if you can get in touch with a nurse in a different area.
I work in the NHS and the public have right to contact a different clincian if they are not happy with their current contact.
Good luck
CH