Some advice please

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1

I am 71 & was diagnosed with Atypical Parkinson’s in June 2023 following a positive datscan. I am on Sinemet which I feel works well for me. Other drugs like Madopar has not.

My problems are my mobility, with attacks of gait freezing being a factor.

The Sinemet I’m told has caused my fairly severe sleep issues, nightmares, REM sleep, insomnia etc.

For this I take Clonazepam & Melatonin. This combination does help me sleep but I wake up tired & exhausted.

Normally my only exercise is 2 hours most days playing indoor bowls. My last Indoor bowling was 11 days ago as now is the gap between the Winter & Summer season.
I normally manage playing indoor bowls very well but about 3 weeks ago I had a bad gait freezing attack & fell over 6 times while bowling, before I was told I had to stop playing due to the club’s heath & safety regulations & club insurance.

In the last 11 days having no indoor bowls to go to I have done my 200 yard walk around the estate where I live every day. During the short walk I gradually get more exhausted & half way round I nearly always get a mild but unpleasant headache. This is the only time I get headaches. I can walk quite normally & take a walking stick but don’t have to use it.

I finish this very short walk with my shirt damp with sweat, I feel very dehydrated
& I have to rest in bed for the rest of the day.

The thing that brings on my gait freezing is either standing still for 2 minutes or sitting in a chair for a short period. Sitting up in bed is the only comfortable place for me to spend my time. So I stay in bed all day unless I am cooking myself a meal. If I want to watch TV I find lying on the settee also works for me.

So on Thursday 8th May I am booked to see an excellent Neurologist privately.

Does anybody reading this see my problem?
What should I mention to the Neurologist, too much information will confuse the matter.

I would rather not have the gait freezing but I can live with it. It is my mobility around my small flat that is a problem for me & the tiredness & exhaustion I have every single day of my recent life.

Three years ago I could walk 10 miles a day. I don’t drink or smoke & I am slim & athletic in appearance.

Best wishes
Steve2

2

Steve

I feel that it’s probably best to tell the neurologist as much information as possible for them to be able to understand what your day to day living is like. Writing a diary from waking to going to bed and what’s happening overnight will hopefully give them a clear picture although it may not be clear to them what’s causing this to happen to you.

I have been taking Magnesium L-Threolate, the lower dose of 1 capsule daily and I have found this has helped with my aching legs hugely. I’m much more comfortable walking than before. I’m very active as walking my dog’s morning & evenings also working as a cleaner 22 hours per week. I was struggling and thoughts of having to give up work had crossed my mind. At 51 I can’t afford to not work, so thankfully the magnesium is working well for me.

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Thanks Hannah.

Best wishes
Steve2

4

I’m not getting a lot of advice as to what I should say.
Wheres Tot, he talks a lot of sense.

Best wishes
Steve2

5

Good evening Steve2, this is Steve2 giving myself a few things to bring up during my first private appointment with a well renowned neurologist this coming Thursday.

I suppose the first thing is to get his confirmation of my original Atypical Parkinson’s diagnosis in June 2023 following a positive datscan & the realisation that the Sinemet I take has made a positive difference to how often I can play Indoor Bowls which is basically every day, but I have to accept that I will have the odd very bad day with my Gait Freezing, which caused me to fall 6 times while playing in my last League match
3-4 weeks ago & having to stop playing 2/3 of the way through the game.

Another big deal for me is whether I take my Clonazepam & Melatonin at night & sleep quite well & wake up feeling sleepy till the afternoon OR I don’t take the pills & have nightmares, don’t sleep that well but wake up feeling pretty good but having severe fatigue in the afternoon. I would say that today has been my worst day since Easter & my first day without taking the Clonazepam & Melatonin.

I don’t think that my medical team view Clonazepam as a long term solution or option. Where do I go with this one ? I’ll ask. Clonazepam also lowers / destroys my already limited sex drive & gives me a “floppy disc”, does this matter at age 71 ? I’ll go with Yes.

What causes my fatigue is it the drugs I take or my Parkinson’s ?

Does my leaky heart valve [mild] need treating. Should I stay on the Beta blockers & blood thinners I take for my A Fib condition. I did try stopping the Bisoprolol [Beta Blockers] but had another A fib attack after 4 days without the drug. So back on them straight away.

I will mention my upcoming 3 hour Urology appointment & Cystography procedure.

I do know that my gait freezing can be brought on by standing still for 2-3 minutes & also if I sit in a chair or hard seat for 20 - 30 minutes.

I can walk normally but why can I only walk 200 yards before extreme fatigue & heavy legs sets in. Why do I drench my shirt with sweat after this short walk? Why am I always dehydrated?

Are any of the many drugs I take doing me any harm ?

Can anything be done for my Spinal Stenosis ? Is Spinal Stenosis & or my Arthritis affecting my gait freezing ?

The other worrying thing is that I have not played Indoor Bowls since the Winter season break on April 19th & I have felt fitter since I stopped. So clearly spending most of the day in bed & just doing a very short walk is good for how I feel. But that’s not living is it ?

I suppose I have to prioritise what my problems are & not give the Neurologist too much information.

Best wishes
Steve2

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6

Hi Steve

Your consultant should have a list of all medications you take but be sure to include any non-prescribed medications. Try to stick to your symptoms without trying to attribute them to particular medications. He will ask questions he needs to know the answers to to get you towards a full diagnosis and treatment plan going forward. You might want to ask the consultant about ongoing care. Is he happy to take you onto his NHS list and look after you on that ongoing basis. If he is happy to go down that path then you may need to get your GP to refer you to him. If you do transfer your care then that will mean using his PNS

Hope this helps

Doug

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Good afternoon Douglas & thanks for the advice. I will make a note of what you suggest & add it to the letter I am taking with me. I do have a long list of the medications I take. I’m not sure if he will know anything about me at all. This is a first meeting & I am seeing him through Benenden & the temporary Bupa membership.

I am not so bothered about my gait freezing & the internal tremor, I have Parkinson’s & accept that. It is more the extreme fatigue / sleep issues I need sorting.

Also I want to know why I can get out of bed & walk for 200 yards normally. But if I sit down for 20 minutes I can’t walk to the bathroom.

And no energy at all ever.

Thanks for your comments.

Best wishes
Steve2

8

Hi Steve

A lot of long-term conditions also come with a load of fatigue. It seems to be par for the course!

It may also be because you have atypical Parkinson’s. Has it been identified which of the syndromes you have - MSA. PSP etc? Knowing that might help with dealing with current problems and also educate yourself about the future.

Hope your appointment goes well.

Regards

Doug

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9

Hello again Douglas … My original Atypical Parkinson’s diagnosis was given to me by an NHS locum neurologist, from Armenia, who specialises in neuropathy. So I don’t have a lot of confidence in his diagnosis. He did add “Parkinson’s plus”

Parkinson’s Plus syndromes, also known as atypical parkinsonism, are a group of neurodegenerative disorders that share some symptoms with Parkinson’s disease (PD) but also have distinct features and progression patterns. They are distinct from PD in that they tend to progress more rapidly and have a poorer response to medication compared to PD.

Key Differences and Features of Parkinson’s Plus Syndromes:

  • Similarities with Parkinson’s Disease:

These syndromes share classic Parkinsonian features like tremor, rigidity, slowness of movement (bradykinesia), and postural instability.

  • Distinct Features:

Parkinson’s Plus syndromes often present with additional symptoms that are not typically seen in PD, such as:

  • Early-onset dementia: Cognitive decline, memory problems, and difficulty with thinking can be prominent early on.

  • Visual hallucinations: Seeing things that aren’t actually there can be a common symptom.

  • Autonomic dysfunction: Problems with blood pressure regulation, bowel and bladder control, and other bodily functions can be present.

  • Gaze palsy: Difficulty with eye movements, particularly looking down, can be a hallmark.

  • Myoclonus: Sudden, involuntary muscle jerks or spasms.

  • Pyramidal tract signs: Symptoms associated with damage to the pyramidal tract, which controls voluntary movement, such as spasticity or exaggerated reflexes.

  • Cerebellar involvement: Problems with balance, coordination, and gait can indicate involvement of the cerebellum, the part of the brain that controls motor coordination.

  • Response to Treatment:

Unlike PD, Parkinson’s Plus syndromes often do not respond as well to medications that are typically used for Parkinson’s disease.

  • Progression:

These syndromes tend to progress more rapidly than PD.

Examples of Parkinson’s Plus Syndromes:

  • Progressive Supranuclear Palsy (PSP): Characterized by problems with eye movements, balance, rigidity, and gait.

  • Multiple System Atrophy (MSA): Involves autonomic dysfunction, balance problems, and movement disorders.

  • Corticobasal Degeneration (CBD): May present with movement difficulties, cognitive changes, and speech problems.

  • What are Parkinson-Plus Syndromes?

Parkinson-Plus syndromes, also known as disorders of multiple system degeneration, is a group of neurodegenerative diseases featur…

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Cambridge Centre for Parkinson-Plus |

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  • Parkinson’s Plus Syndromes: Symptoms, Diagnosis, Treatment

22 Dec 2024 — 4 min read. Parkinson’s plus syndromes, also called “atypical Parkinson’s,” are illnesses that attack your brain and ne…

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WebMD

  • Parkinson-Plus Syndrome - StatPearls - NCBI Bookshelf

1 Jun 2023 — Introduction. Parkinson-plus syndrome (PPS), also called atypical parkinsonism, refers to a group of neurodegenerative m…

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This is for informational purposes only. For medical advice or diagnosis, consult a professional. Generative AI is experimental.