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Hi, my name is Erica and my husband Matthew has over the last year ,Sept22 ,gas been seeing a Neurologist at Harrogate hospital. We paid for a brain scan which didn’t show anything, but he has a diagnosis of parkinsonism. He is also having memory tests, so far, a memory test, sychometric test and awaiting final results and a diagnosis which we are told will be about next April24.
Doesn’t this all take a long time.
Mat is taking 6 tablets a day of
Co- Beneldopa 50mg/12.5 mg
The main problem we have is getting hold of the Parkinson nurse when something different happens i.e starting to have hallucinations and not knowing what to do. Ringing the parkinson nurse
,not being able to speak to her. Ringing the helpline the nurse telling me to do a variety of things, but the hospital nurse then telling me that it wasn’t possible to contact the neurologist. The hospital Parkinson nurse said that the hallucination was probably caused by a recent Covid injection. However over the last month Mat has had another couple of hallucinations.
Mat isn’t shaking much and he still walks quite well and for about an hour.
His anxiety is sky high and especially if we do anything different from routine or go on holiday. Is there medication that can be taken for anxiety with his current meds?
We have timers set for meds, but if I am out he hears the alarm, but forgets the meds which this then has a big affect on him even tho the neurologist says the meds are only movement related and not brain related.
This is all quite frightening especially the lack of support or idea of what the future is.

Hi Erica,
We’re very sorry to hear about your husband’s current challenges, and in particular to hear you are not getting the help you require. We would encourage you to reach out to our helpline on 0808 800 0303, as they can assist with finding local support. They can also refer you to sources to help with psychological needs, for your husband and yourself. You may find this information from our website to be of value as well: Anxiety. We hope you’ll take advantage of these resources when you can.
With our warmest welcome,
Forum Moderator

Good morning Erica01423 … I am 69 years old & have been diagnosed with
Atypical Parkinson’s about 8 months ago. I started Co-Beneldopa 50mg/12.5mg
pills yesterday. I have been told to take 1 a day for a week, then
2 pills a day [7am & 1pm] for a week, then 3 pills a day [7am, 1am & 7pm] for a week, then 6 pills a day [2 pills at 7am, 2 pills at 1pm & 2 pills at 7pm] & carry on till I see him again in April 2024. My NHS neurologist has just left the NHS.
So this new medication prescription is down to my Parkinson’s Nurse.

The MRI Brain scan will not show whether your husband has Parkinson’s.
To show Parkinsonism he will need what is called a DATscan of his brain.

My Brain MRI scan was also clear but my DATscan, which measures the Dopamine in my brain, was positive for Parkinson’s.

I do get very realistic dreams. My best was where I obtained a white horse which I took for a long ride. When I woke I was worried where I had left the horse. It took
a few minutes for reality to kick in. I have also been on Madopar & Ropinirole for Parkinson’s but stopped both.

My worst symptoms are around gait freezing & mobility. Getting up from a chair takes many attempts.

I also have Peripheral Neuropathy & recent Atrial Fibrillation. I take other pills for both. In 3 weeks time I will be taking 11 pills a day.

It is important to have a Brain MRI scan as this rules out things like strokes. So your money wasn’t wasted. But he does need a DATscan at some stage [maybe]. But he is on the drugs he would be put on anyway. But at least you would know for sure.
A DATscan is the best tool for Parkinson’s diagnosis but of course a Neurologist specialising in Parkinson’s can diagnose. Not all Neurologist’s are knowledgeable of Parkinson’s.

Things do happen incredibly slowly & our reaction to the various drugs varies.
There are of course a number of different Parkinson’s … A lot of guess work goes on.
Parkinson’s can’t yet be cured but the symptom’s can be treated.

Any questions please ask.

The Parkinson’s UK nurses here are brilliant by the way & worth talking to. Especially if your own Parkinson’s Nurse can’t be reached.

It might be an idea to have him checked for Peripheral Neuropathy. A lot of Parkinson’s sufferers have both. My PN is treated by Amitriptyline.

Best of luck

Hi Steve welcome, I can relate to you my husband was diagnosed at 67 he’s now 71 he was given meds but they have been trial & error. He had hallucinations, bad dreams, rigid or frozen movements very difficult. For him cutting down his meds have helped he no longer hallucinates his speech is better. What is true from reading the forum is pd is different for each person, but similarities & common things arise. Good luck with your journey.

My husband has had PD for 30 years and over the past year I could see he was anxious particularly at ‘off’’ times. I asked his nurse for tablets for it last July but they wouldn’t so I had to get stroppy in the end. 6 weeks ago his neurologist prescribed either sertraline or citalopram so he started on sertraline. There was improvement at first but after 3 weeks his tremor had become so bad he had to come off it. He has been on citalopram for two weeks. Not seeing any improvement but have to give it time. Anxiety is very common in PD .

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Hello Steve2
Getting up from a chair

I noticed your comment on difficulties in getting up from a chair. You may well know all this but in case you don’t people don’t realise how complex this can be. In simple terms

The seat height and depth are important and ideally use a chair with arms.
Wearing the shoes/slippers you most commonly wear measure from the back of your knee to the floor. This gives you the height your chair should be. You can get chair raisers to increase the height of your chair if it is too low.

Most important is the technique. The hardest part in getting up from a chair is getting your torso and head over your knees and this is made more difficult if you try to do this whilst sitting back in your chair.

If you are able shuffle forward on your chair so that you are sitting nearer to the edge. Position your feel slightly behind your knees. Press up on the arms of the chair - rocking 2 or 3 times can give a bit of momentum if needed - and come to stand.

Check your balance before moving away.

If you use a walker come to your feet before taking hold of the walker. Don’t use the walker instead of the arms of the chair, it is not stable and not designed for use in that way.

Morning Tot … I bought my 1 bed flat furnished. The previous owner was a very large gent & the settee is too low & the “support” in this chair has gone. It looks good but clearly is not functional. It is my only chair other than dining table chairs.

My upper body is quite strong & I can get up eventually.

Best wishes

That’s good Steve2, and I do understand about having to make do with what you’ve got, I was the same when I bought my own flat many years ago now. One thing that comes across crystal clear the longer I have Parkinson’s and that is many if not most of us are a creative bunch, and find ways of doing things that we would have given no thought to at all pre-diagnosis. I just thought I would mention about getting up from a chair because many don’t realise just what it involves and if you struggle to get up from a chair you can be using up energy which could be used to do other things. It might not be much energy, but a little bit here and there can cumuilatively add up to quite a lot. Maybe take the basic principle and adapt it a bit for the chair you have. In any event it was worth posting as the technique may help someone else.

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