Parkinson’s Disease Symptoms

Posted on April 24, 2017 by Peter

Parkinson’s Disease Symptoms August 18th 2023

My Parkinson’s disease symptoms have inevitably become more problematic, in particular, I am now falling over quite regularly and without warning. Fortunately, I have inherited very strong bones from my father who passed away in December 2018 aged 98.

Parkinson’s Disease Symptoms October 5th 2017

Currently, the medication is helping me a great deal so that my Parkinson’s Disease Symptoms are alleviated and I am living fairly normally see details of my medication here

My biggest problem is that my feet still stick to the floor at times, but I’ve not fallen over now for months and my voice is still very weak but I can manage.

My life has improved massively since being prescribed a prolonged release version of the Ropinirole and I am doing just about everything that I was doing previous to to the onset of my Parkinson’s Disease Symptoms.

Parkinson’s Disease Symptoms April 24th 2017

Having been very physical over the weekend, I am feeling a lot better, I’m not feeling the constant tingling in my fingers like before, so I don’t know if the medications are working or if I’m just coming to terms with the diagnosis.

What has not improved are my legs and feet which still seem to be getting into a tangle – although not to the point of falling over, but I’m shuffling and staggering more often. My neighbours probably think I’m drunk; I’m not although I still enjoy a glass or two of wine with my evening meal.

I have decided to increase the dose of pramipexole from 3 a day to 2 in the morning followed by 1 at lunchtime and one at bedtime, to see if that helps my legs.  The dose can go up to 2  three times a day so its well within the limits.

Parkinson’s disease (PD) is a degenerative disorder of the central nervous system, PD is more commonly seen in the elderly. With most cases occurring after the age of 60, the sickness rate after the age of 65 is about 2%. Most cases are sporadic, less than 10% of the patients have family history of the disease.The main pathological change of PD is the death of dopamine-generating cells in the substantia nigra, a region of the midbrain; then it causes obvious dopamine DA to reduce in the corpus striatum. The cause of this pathological change is unknown. Many risk factors have been found, including: hereditary factors; environmental factors; aging factors; oxidative stress and so on. Read more here

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About my Parkinsons and The DVLA (2)

Posted on March 29, 2022 by Peter

Thankfully I was able to get them to see some sense which resulted in them reinstating my driving licence but ONLY FOR ONE YEAR.

Obviously, I was none too pleased about that but I had to accept their ruling.

It seemed to me that there were two separate departments that were on my case and I had to get on the right side of whichever one would be the most approachable. During the following year, I built my case more strongly and after some to-ing and fro-ing, I eventually got my licence again for three whole years. YAY

I am now about halfway into the three-year period that the DVLA specified and getting a little concerned about what will happen this time.

Well, the next time has now arrived and I have had to reapply for my licence to keep on driving.

As at today’s date (the 18th August 2023), all I know is that I have submitted my application and that the DVLA is going to write to my Consultant for an opinion.

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Parkinsons and the DVLA

Posted on September 5, 2019 by Peter

You may recall that when I was first diagnosed, I had to inform the DVLA of my condition which of course I did. They immediately gave me a restricted 3-year licence,

Now that the 3 years are up, I have had to reapply for my driving licence, so you can imagine my shock and upset when a letter arrived saying I must NOT drive!

Fortunately, I was also seeing my Neurologist the same day that the letter arrived and despite the fact that the DVLA had said that they would be writing to him, he hadn’t had any communication at all from the DVLA.

Parkinsons and the DVLA

I have been without my driving licence for 3 weeks now and I don’t know when the case may be reviewed. OBVIOUSLY, I HAVE CHASED THEM BY PHONE AND EMAIL. On August the 23rd I sent the additional evidence i.e a letter from my Neurology Consultant Dr Carl Mann, addressed to my GP Dr Sarah Tyrrell stating that I am fit to drive.

Now, I would also like to inform you that I feel highly aggrieved at the decision to revoke my licence in the first place.

Having completed an application to renew my Group 1 car driving licence, the DVLA wrote to me saying that “ the DVLA Doctor is considering my fitness to drive and has decided to write to my Consultant Dr C. Mann for further information” at the address I supplied.

However, when I next met with my Consultant Dr Mann at Leighton Hospital on the 16th of August he had no knowledge of that.

HE HAD NOT BEEN CONTACTED AT ALL. The letter from the DVLA which said that I must not drive arrived the same day so naturally this was an important topic of discussion and was the basis of his assessment.

Following this assessment, he was fully satisfied that my condition is such that I am able to meet the relevant standards for driving.

He acknowledged that the addition of Madopar 50mg /12.5mg to my medication regime has actually made a massive improvement to my well-being and ensures that my ability to drive safely is maintained at all times and that:

  • I do not suffer from sleepiness either medication-induced or otherwise,
  • I do not have freezing or “off” periods,
  • I do not suffer hallucinations,
  • I do not suffer from impulse control disorder,
  • There is no cognitive impairment and
  • I have sufficient muscle strength to control a vehicle safely and fully.

I, therefore believe that my condition is not likely to cause a sudden disabling event at the wheel, or cause me to be unable to control my vehicle safely for any other reason as Dr. Mann suggested, the DVLA’s decision was BASED on OUT OF DATE INFORMATION.

I am still waiting for the case to be reviewed…

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Goodbye Parkinsons, Hello Life

Posted on June 20, 2019 by Peter

I’ve mentioned this book before – my daughter bought me a copy of Goodbye Parkinsons, Hello Life when I was first diagnosed in 2016.

Re-reading it now makes so much more sense to me, after 3 years with the disease. I now feel ready to follow the excellent advice given by Alex Kerten.

In his book Goodbye Parkinson s, Hello Life! Alex presents his breakthrough holistic technique that combines dance therapy, behavior modification, and martial arts, to prove that there is life beyond the diagnosis of Parkinsons Disease.

Goodbye Parkinson s, Hello life! received “Recommended Reading” status by the Michael J. Fox Foundation and listings on the National Parkinson’s Association social media sites.

I am now starting to follow Alex’s techniques and I am committed to becoming a “Parkinsons Warrior” so that I can succeed in eliminating many of my symptoms and return to a productive and fulfilling life. Instead of viewing myself as a Parkinson’s victim, the methods in Goodbye Parkinsons, Hello life! should lead me to becoming a healthy person with Parkinson’s.

I’ll let you know how it goes soon…

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New Year, New Problems

Posted on March 20, 2019 by Peter

Update June 2019

THE Levodopa prescribed was actually insufficient to have the desired effect, however, following a further consultation the initial dose has now been doubled. I’m obviously hoping that it will go some way towards stopping all of the falls I’ve been having lately.

New Year, New Problems March 2019

After the stress of being admitted to the Christie hospital as an emergency my Parkinsons symptoms have steadily worsened, its New Year New Problems for me, not the least of which was the diagnosis of Prostate Cancer early in 2018.

Stumbling, staggering about and falling over have become part of my daily routine, so I contacted my Specialist Parkinsons Nurse to see if any changes could be made to my medication.

I saw her on 7th March 2019, having last seen her on November 8th 2018, my dad’s birthday – my dad passed away about 3 weeks after that day at the age of 98. This also contributed to raising my stress levels.

Feeling a bit like the ball in a pinball machine, I’m covered in bruises and needing something to improve.

This particular nurse is wonderful – she really listens and seems interested, she also knows her subject very well and inspires confidence. She has now added Levodopa into the mix and I’m hoping it will make a difference, I’ll let you know next time.

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Parkinsons Sidelined

Posted on January 22, 2019 by Peter

I say Parkinsons sidelined because that was he way the neurologist described it when I met him in May last year.

In the Autumn of 2017 I had been referred to the urology department because of some issues with my waterworks.  The Consultant and I had met many times previously as I had had a Cancer of the Bladder treated successfully by him between 2001 and 2008 and I had been discharged after being clear for 5 years in December 2013.

I had a DRE (Digital Rectum Examination) and following that, an ultrasound scan which told the Consultant that all was OK. However – and this is why I feel so very lucky – he said he would like an MRI scan “for future reference” as a base line picture.

Parkinsons Sidelined

This was late November 2017 and he wrote to me in December to say that “surprisingly” the MRI – which was a 40 minute scan, showed up a small abnormality, so he would arrange a biopsy to find out if anything sinister was going on.

The hospital called me with an appointment for the prostate biopsy on the 27th December 2017 back at the Urology Department which kind of took the edge off Christmas.

The surgical Consultant who did the biopsy said the results will be back in 2 weeks but call us If you don’t hear in 3 weeks .

I waited nearly 5 weeks because the MRI scan was reviewed twice, before seeing yet another doctor for the results.

He asked if anyone talked to me about my prostate cancer!!

He then went on to tell me that it was at T1 stage and my Gleason number was 7, none of which meant anything to me or to my shocked wife, who has been with me throughout.

I then saw a specialist Uro-Oncology nurse who arranged a further  appointment with an Oncologist consultant, putting me into the care of the specialist Christie Hospital. This appointment was to be at the Macmillan Cancer Unit at Leighton Hospital in Crewe.

I thought that I would have to make a decision about my prostate cancer treatment so I had read as much about the options beforehand  so I could make an informed decision.

However, when I met the Oncologist, who told me that surgery was not an option because of a hernia repair I’d had done in February 2016, I didn’t know what to think.

Parkinsons Sidelined:  they had a plan which I knew would include radiation therapy of one kind or another.

They floored me when they said that it would be 6 months before the radiotherapy  would be started; instantly my wife and I were so worried, but then the consultant outlined the plan fully.

Instead of just one treatment I was going to get three – one after the other!  Their aim is to cure me with this treatment:

The 1st part is 6 months of hormone treatment; I have already taken anti-androgen tablets for 3 weeks which minimise any effects of the hormone injections. (I had the first injection on 20th February 2018 and the next will be on 15th May 2018).

The second stage will be a session of HDR Temporary Brachytherapy (I’ll explain what this is later) and,

Thirdly I will have 15 sessions of External Beam Radiotherapy daily over 3 weeks at the Christie Hospital.

So in fact I shouldn’t really say Parkinsons sidelined as I am confident of a successful outcome now, but I know I am going to be pretty worn out by the end of it, not to mention trying to park the car anywhere near to Christie’s.

 

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Physiotherapy for Parkinson’s Disease

Posted on February 13, 2018 by Peter

Physiotherapy for Parkinson’s Disease

Physiotherapy for Parkinson's Disease: Parkinson's Disease Awareness Image

Parkinson’s Disease Awareness

Meeting a Physiotherapist who really knows about Physiotherapy for Parkinson’s Disease.

During September and October I was referred by my specialist nurse to a Physiotherapist at my local hospital in Crewe who specialises in Physiotherapy for Parkinson’s Disease exercises.

To be honest I wasn’t expecting too much from her because the only other time I had seen a physiotherapist was not long after my diagnosis in July 2016. On that occasion a Community Physiotherapist came to my home but left me feeling that it was a waste of time.

Physiotherapy for Parkinson’s Disease That Works

This time was different I’m pleased to say, because the physiotherapist took time to understand what was going on with me, and only then did she recommend the actions.

One of the problems of Parkinson’s Disease is the rigidity that occurs in some muscles, making it difficult and painful getting some things done.

The exercises are simple and easy to do albeit tiring – it involves carefully stretching the worst affected muscles in my legs, and ankles, and in my hands and wrists.

Even after just the first introduction to the Physiotherapy for Parkinson’s Disease exercises I started to feel as if I could move better than before.

Now I do a complete set of these exercises for 20 – 30 minutes every morning and I can move with relative ease all day long as part of my regular movement regime of swimming and walking.

 

 

 

 

 

 

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Against Professional Advice

Posted on July 7, 2017 by Peter

I would not normally go against professional advice, yet the last time I spoke with one of the Parkinson’s Disease Specialist Nurses who is based at the University Hospitals of the North Midlands (UHNM) I felt that I had to.

Just to recap, the Consultant Neurologist had prescribed Amantadine Hydrochloride alongside the changeover to Ropinirole back in December 2016 because I was struggling with the stiffness in my legs which was making me shuffle like a really old man.

However with the change in medication which I needed to build up slowly to find out the right level I consulted one of the Parkinson’s Disease Specialist nurses Louise, who advised me not to start the Amantadine Hydrochloride in order to keep things clear and see what worked first. Good advice at the time.

I followed that advice until May this year (2017) when I managed to get the new Consultant Neurologist to prescribe a prolonged release version of the Ropinirole which I had been taking 3 times per day: 3 in the morning, 3 at 3.00pm and 3 at 10.00pm every day.

Taking this amount of immediate release drugs every day, meant that I experienced spikes in effectiveness and the tiredness feeling after taking the medication.

The new prolonged release version of Ropinirole, means that I take my medication once per day in the morning and I am on 10 mg which feels ok.

However the stiffness was still there so I called the Parkinson’s Disease Specialist nurse to ask about taking the Amantadine Hydrochloride. Her response was no different from previously and I had the impression that she thought the doctor was wrong to prescribe it in the first place.

Now, as I said, I would not normally go against professional advice, yet the stiffness and shuffling around was so bad and driving my wife around the bend, that I decided to try it.

I am very glad that I did because now after about 4 or 5 weeks I can move almost normally again which has opened up things for me, hallelujah!!

 

 

 

 

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Ropinirole Side Effects

Posted on May 25, 2017 by Peter

Ropinirole Side Effects (for Parkinson’s disease:)

These Ropinirole side effects are discussed a lot in various forums, but thankfully I am happy to say that I am mostly unaffected by them.

  • Feeling sick (nausea)
  • Sleepiness
  • Abnormal uncontrollable body movements
  • Low blood pressure, especially on changing position (feeling dizzy or faint)
  • Dizziness (including vertigo)
  • Confusion
  • Hallucinations
  • Stomach ache
  • Vomiting
  • Indigestion
  • Swelling of ankles, feet and hands (due to fluid retention)
  • Mental problems such as abnormal thoughts and delirium

These Ropinirole side effects are the ones that the Neurologist described as “interesting” when I saw him for my last appointment on 5th May.

NO I do not suffer from any of this – nor am I hiding anything either!

  • Compulsive behaviour (e.g. gambling, shopping, interest in sex)
  • Inability to resist the impulse, drive or temptation to perform an action that could be harmful to you or others, which may include:
    – Strong impulse to gamble excessively despite serious personal or family consequences.
    – Altered or increased sexual interest and behaviour of significant concern to you or to others, for example, an increased sexual drive.
    – Uncontrollable excessive shopping or spending.
    – Binge eating (eating large amounts of food in a short time period) or compulsive eating (eating more food than normal and more than is needed to satisfy your hunger).
  • Extreme sleepiness (and sudden onset of sleep during normal activities)

Some of the side effects in Parkinson’s disease are related to taking Ropinirole with levodopa (e.g. abnormal uncontrolled movements).

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

A serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction include: rash, itching/swelling (especially of the face/tongue/throat), dizziness, trouble breathing.

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Walking And Swimming

Posted on May 1, 2017 by Peter

I’m finding now that the medication is helping me – with no real side-effects, and that  walking and swimming are really good at keeping me moving.

As at this time, I go swimming once a week for about an hour and walk three or four times a week for up to a couple of hours; I  swim maybe 500 metres and walk about 3-4 miles or so every time, so I’m quite happy with my general level of fitness.

As I mentioned in keeping moving and exercising, since we renewed our National Trust membership year, both my wife and I have been keen to get out and walk in the wonderful parkland that many of the major ones have.

From today I have increased my Ropinirole to 3 mg, three times a day and I hope that it doesn’t upset anything.

On Wednesday this week a follow up to the speech and language therapy group has been arranged; at the end of the 6 week course we we asked to deliver a short 5 minute presentation on a subject of our own choosing to demonstrate our improved speech facilities.

However, we ran out of time so I imagine this is the intention of the follow up session.

I had prepared a few slides of some holidays, but I may do something else now.

18th May 2017: Update

What with other appointments for both myself and my wife, who has been plagued with gastritis and what’s been diagnosed as post-cholecystectomy syndrome, I called the SLT therapist and cancelled the follow-up. She has now discharged me and said to call if I need anything further from them.

I went to the Lifestyle Centre again yesterday for a swim and did 15 lengths using  different strokes, front crawl, breast stroke and back stroke. I am really enjoying walking and swimming as often as possible. Read more about exercise when you have Parkinson’s Disease.

 

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My Medication and Parkinson’s Disease

Posted on April 25, 2017 by Peter

 

My Medication and Parkinsons Disease

Update 5th September 2019

In April this year (2019) I saw one of the Specialist Parkinson’s Disease Nurses at the Kiltearn Medical Centre in Nantwich.

She was very helpful when I outlined what changes were occurring in my symptoms and suggested that we should try another drug called Madopar which combines levodopa with benzeraside in a 50mg/12.5mg compound.

The effect was remarkable, and when I was reviewed again in June 2019 the dose was increased to 2 capsules three times per day. Which actually takes some remembering !!

So when I saw my Consultant in August I asked about a slow release version but he said it doesn’t work so well. I am therefore stuck with taking them 3 times a day – it is worth it though.

To discuss my medication, I last saw one of the Specialist Parkinson’s Disease Nurses at Leighton Hospital in Crewe on 14th February this year.

Although I was expecting to see the newly assigned nurse for Crewe, she was not yet available so I saw Louise, one  of the nurses from the Royal Stoke Hospital who covers my area currently.

As I had spoken to Louise about my medication in January I was happy to meet her this time.  We discussed my medication (1 mg Ropinirole 3 times per day) and she suggested I carry on building up the dosage until my symptoms subside – so at that point I started to increase gradually and I am now (25th April) taking 3 in the morning, 2 at 3.00pm and 2 at 10.00pm although I shall increase that to taking 3 in the morning, 3 at 3.00pm and 3 at 10.00pm from next Monday.

I am due to see the Consultant Neurologist at the hospital clinic next Friday 5th May, so we’ll see what that brings – I’m quite happy with the Ropinirole medication at present so I hope they don’t suggest changing it.

My Medication Update: 5th October 2017

I again saw Louise, one  of the nurses from the Royal Stoke Hospital who covers my area currently, but this time she was accompanied by Gill, who is the newly assigned nurse for Crewe.

I understand that she will be taking me on in the future so it was good to meet her.

This meeting was to review my condition and whether the medication is still working and still suiting me.

This is my medication at present:

  1. Amlodipine 5 mg tablets – One each day

  2. Amantadine Hydrochloride 100 mg capsules: One per day

  3. Ipinnia XL 2 mg tablets (Ropinirole: total daily dose 10 mg) One each day

  4. Ipinnia XL 8 mg tablets (Ropinirole: total daily dose 10 mg) One each day

  5. Duloxetine 20mg Gastro-Resistant Capsules One per day

  6. Tamsulosin 400 microgram (Pamsvax XL) – One per day

Not all of them are for my Parkinson’s Disease symptoms. You’ll see that I got the prolonged release tablets and they’re working well.

The Nurse asked about the Amantadine again, it seems that she doesn’t agree with the idea of me taking it, but it IS working for me. See Going Against Professional Advice

My Medication Update: 25th May 2017:

Whilst I was OK on the 9 tablets I was taking every day plus 2 others for blood pressure etc. I discovered that a slow release tablet might be available to me.

I asked the Neurologist in the clinic and was told it may be possible as the cost had come down with generic medications on the market, but would be down to my GP to agree.

He recommended 10 mg as my medication level and sent the request to the GP.

I collected my new prescription 2 days ago and feel happier taking my medication once a day instead of having to remember to take them at fixed times during every day. ( I actually set up alarms on my phone to remind me).

It is feeling good as the side effects of spikes in my medication caused me to be very tired immediately after taking the immediate release tablets, and that now seems to have gone!

My Medication Update 4th May 2017:

I actually think that my medication at 3 x 3 per day (3 mg Ropinirole 3 times per day) since Monday this week is feeling about right. The only thing is that it”s making me a little over-confident – I’m doing more and I fell over twice in a couple of days through overbalancing.

 

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