Newsletter No. 004

Welcome to number 4 of Northants Parkinson’s People Bulletin.  Well isn't the year going quickly. We hope you have enjoyed the previous issues but if you missed these and would like to see them either see our ARCHIVE  or email Sylvia at: [email protected] and she will gladly sent any you have missed.

NYPSG holiday to Torquay July 2019
Carlene and John Byland report on the Recent Northampton Younger Parkinson's Support group holiday to Torquay
We set out on our holiday on July 1st. The weather was perfect warm and sunny and the hotel was lovely. The food was great, so were the staff, very kind and helpful. There was entertainment in the evening and even a trip to the theatre (at an extra cost). The group went on two day trips, one to Exeter and other places nearby. The next  trip was to Exmouth,both of which were enjoyed by everyone.

There was lots to do and see in Torquay. John and I went on an open top old bus on a Sight-seeing trip.

We went to Babbacombe downs, Meadfoot Beach, along Torquay's seafront,then on to Preston Sands where we stopped to have an ice cream and a cuppa. Finally we went to Paignton and made our way back to Torquay. There was friendly banter from our tour operator, who talked  all about the different areas
We had a lovely time with our friends from the NYPSG. Now we are looking forward to next year when hopefully there will be another lovely  holiday. Well done Sue for taking over the booking of the holiday trips from Jean. Thanks Jean for all the happy holidays you organized, and not forgetting Liz for the lovely Isle of Wight

Northampton Younger Parkinson's Support Group
Upcoming Events

Our next support meeting will be on Saturday 3rd August at 10:30am at The Barratt Sports and Social Club, 42 Kingsthorpe Road, Northants, NN2 6HT starting at 10.30 am. Free coffee/tea on arrival.
We will be having a Bring and Buy to raise funds for the group - all items gratefully received. We hope to see you soon. 
For more details call Sue: (H) 01933 274856  (M) 07785 584793 email: [email protected] 

The 'Younger Chaps Group'
A great example of people with Parkinson's extending the hand of friendship and support to others affected by Parkinson's is the 'Younger Chaps Group' -  working title as they haven't decided on an official name as yet. This group of new friends meet every month or so.  Mostly they have a meal at a local pub but have tried bowling and snooker. 
This is a simple model of support and the group were introduced by Angela who felt they would all benefit by being in touch with others in similar situations.  The plan worked and they have a joke and a laugh but also help each other with the more difficult issues that Parkinson's can sometimes bring. 

If you are interested in being included in the next outing telephone Angela 07954 099 537 who will pass your details on.   

The NHS is now available on Alexa
The National Health and Amazon have teamed up to provide Health information via Amazons Voice activated  Echo devices.  The Voice service is available via Echo devices and is also available on smart phones, PC and laptops. So is it any good? Only one way to find out. Test it!
I tested the new Health info feature over the last day or two and it seems quite comprehensive and very quick to answer.

'Alexa, what are the symptoms of Parkinson's disease?' 
A. 'According the NHS England, the three main symptoms are.. and a concise answer came out

Onto other questions.

What are the symptoms of Progressive Supranuclear Palsy?
How do you treat Haemorrhoids?
What is the best way to stop a nosebleed?
How do you treat a swollen Achilles tendon? 
and so on until i couldn't think of any more , several of the answers referenced Harvard Medical school instead of NHS but all answered well and comprehensively offering practical treatments where applicable.

Amazon must now have me pegged as a raving Hypochondriac and would be sending me adverts for all sorts of surgical appliances, Good job I use an ad-blocker

I must admit we already have two Echo dot devices in our house, one in the living room and one in the kitchen. I bought them to try to make life easier for both of us.  They are set up so they give basic control of the TV, several lights and sockets and also to issue reminders at set times. They allow me to 'drop in' on the living room from the kitchen to check up or ask preferences for a meal I'm preparing.  I'm sure they could do more but sometimes you have to keep thing basic until all the household gets used to this newfangled stuff.

We have had teething problems. The command 'Alexa, turn the TV to channel 17'  worked every time for me, however Di would say 'Alexa can you turn the television to channel 17 please' and it would not work, however I could re-issue the command from the kitchen and all would be well.

Sometimes the AI system behind the voice would surprise us, if we ask a command or question and say thank you, Alexa will say 'Your welcome'. Say goodnight and and you get a range of replies from 'goodnight' to 'good night sleep tight, don't let the bed bugs bite'

So are these devices safe?

Some press articles have suggested your privacy is at risk with these always on listening devices. 
Well its true to a degree, your voice gets recorded under certain circumstances. But I think the risk of invasion of privacy is outweighed by convenience and the help these devices can give.  I wouldn't be calling out my credit card pin number in front of her (it) though.

Weighing things up.

Amazon has sold 100 MILLION of these devices, their technology division which designs, supports and improves the echo services employs a total of 10,000 people. Even if ALL of these were actively listening to recordings they would all need to listen to 10,000 each to hear everything.

One of the things Alexa does really well is reminders,  Pill reminders, appointment reminders, it does this pleasantly and there are no cancel buttons for those with dexterity problems

As a comparison (Olympus Care will sell you a Memrabell Pill reminder for £124, all of the functions included could be performed  by the Echo Show 5 (£78**)   and most of the functions could be performed by the echo Dot (£24**)   ** Not including a working internet connection)

Because it is internet based you do not need to be tech savvy,  family or friends can (securely) access your account and set up reminders and alarms etc.

You can enable Alexa skills to add skills for nearly everything. Too many to list  but here are some we like.

Alexa, create a list called Shopping, or  To-do or Holiday Stuff or anything.  Alexa will let you add and delete things and will say the list to you.  Alternatively see the list on your mobile phone.

Alexa, add Chocolate biscuits to the shopping list. (see the list on your smartphone when in Tesco or Lidl)
Alexa, play BBC Radio Northampton, or any other radio station
Alexa, what is the weather/time/news? Set this for location and news subjects.
Alexa, Play Pointless/The Chase/Deal or no Deal and a lot of other games.
Alexa, read my kindle ebook to me
Alexa, what's on TV tonight?

Plus lots of memory functions, Guard dog sounds for when you are out and relaxation sounds to get you to sleep.

If you want to know more about Alexa there is a very useful website called The Helping Home. A site dedicated to Ageing in place at home.  Its American but it has lots of advice on Home modifications and assistive devices.

The site is here: 

The Alexa guide is here: 


Angela Jeffery
For the past 10 years I have been delighted that we have been privileged to have Angela as our branch Parkinson's Adviser. Many of us are very sad that Angela will no longer carry out this role ,although were aware that that role was becoming rather restricted and reduced by Parkinson's U.K. She will be very much missed .

Angela's visits were always lively, helpful and uplifting, this is apparent from all the lovely remarks I have been receiving from members since we heard the sad news. It is without doubt that everyone felt more confident and greatly uplifted after her visits .

Angela gave a great deal of her own time and energy improving the wellbeing and fitness of people with Parkinson's and their loved ones  and connecting people with professionals and people with like problems [a problem shared ]. Always giving far more than the 17 hours paid work, I know her car has delivered many a commode and item of equipment !

From the bottom of our hearts Angela we send you our love and best wishes for the future.

Val Hamblin



Part Four of Doug's  memories
of his Army Service days

Place.  Junior leaders battalion RAOC 

Time. November /December 1959
Now after the summer and autumn camps and exercises, we are well into the daily routine and getting used to the discipline. But now winter was drawing nigh, the heating was not the greatest. Consisting of one stove in each room (no radiators) burning coal. Each room had a rota to keep the stove going all day and make sure that there's enough coal. With this onerous duty came great responsibility. We shortly found out that very often the coal supply for the day would have reached its limit which meant finding a solution rapidly or no heat. 
On the first occasion that this occurred on my watch I resolved the problem by wandering around to another house and then purloining a couple of buckets of coal. I didn't tell anyone. 
The next day nobody queried the loss of the coal from the other house. So I let it go but I did remark to one of the senior boy's that our House's stock was running low. Later in the day he came back to me and said that I was right and  the stock was more than just low. We went to the coal store for our house and there was a significant amount missing. So I quietly explained what happened the day before and that I taken it because the quarter masters store was closed. He said no problem but this was happening all over the camp so he asked if I was up for rectifying our shortage, I agreed and he went to get some mates to help in our upcoming enterprise. 
Later that night after lights out I was awakened by Phil Simmons (the senior boy) "come on buck's" he said "get dressed". So I did and followed him out of the block to meet a couple of his friends. Of we went slipping through the night using the shadows to hide us. Of course this was the first time I had done anything like this before and I found it exhilarating. After around 20 minutes we made it undetected past the camp perimeter patrols. These were supplied by the regimental depot across the road from our camp (we were not allowed to mount guard due to our age). Evading detection we managed to make our way back to the block with a bucket of coal each and each night for 3 nights we succeeded in our efforts. We then had a meeting and decided we would call a halt to the enterprise. 
After a couple of days we heard that a group of lads from another house got caught doing the same thing. So we decided that we were lucky, but in the end there was a good outcome. The senior boys in question had a quiet word with our house sergeant and the amount of fuel issued was increased. They could have done that in the beginning but it would not have been as much fun. 

Until the next time

Colours : Find the colours to fit the grid. To let you know its not just the colours of the rainbow we are looking for, Here are TWO clues to get you going.
The solution is below

Sylvia's Gardening Tips.

Tomatoes are coming on a treat.   Now is the time to cut off the bottom two layers of leaves to allow the air to circulate through the plant helping to set and ripen the fruit.   Picture 1
Cucumbers so easy to grow both in the greenhouse and outdoors in pots, tubs or old buckets.  I have two types .  The first is just a straight forward everyday type of cucumber.   Picture no.3
The second cucumber is new to me.   It’s a lemon cucumber..doesn’t taste like lemon but looks like one.   Picture 2
The most common disease affecting cucumbers is powdery mildew.   Picture no, 4
It won’t kill off the cucumber plant but will sap it of its nutrients.
The cure?    Mix one part dental mouthwash with three parts water and one teaspoon bicarbonate soda and spray.    It works!
One little tip for this month.   Do carry on dead heading flowering plants and they will reward you with blooms right through to end September.
Happy gardening.   Good for body and soul
Tomatoes are coming along.
Lemon Cucumber
Cucumbers, a bit wonky! but still tasty
Powdery Mildew

Parkinson’s Disease 
Take a Walk with me.
Last Month we began an extract from Simons book (Chapter 2:  Pushing back the walls of the Bubble) Now we have the 2nd part of this chapter
...all I know is when I was asked if I wanted to ride the cable from pier to beach I immediately said I would.

Looking back, the impromptu decision I made to take a ride on a zip wire set up from the end of the Bournemouth pier was a big part of the fun activities at the show. If I’m being honest, I’m almost certain I wouldn’t have done it if I’d have been fit and well, siting the length of the queue or the fuss and bother of the time away from the family as perfectly legitimate reasons why it would have been too much bother. Anyway, I could do it the next time we attended the show… blah, blah, blah. The fact I completed the challenge mean that years later I’m still ‘pushing back the walls of the bubble’ by simply writing about it.
Once in the queue, progress seemed to take an age. The disease gaining the perfect opportunity to cast doubt in my mind. Once you’ve let Parkinson’s feature in your thinking it can cause havoc with your plans. Instead of a sequence of rational thoughts seeing you complete a task or explore an idea, a series of knee-jerk reactions control that can leave you feeling isolated and confused.
Most people suffering with one of the most common symptoms of Parkinson’s [tremor] will tell you that if you continue to focus on the negatives then your ability to partially control the ‘shakes’ becomes impossible. This often leads to episodes of freezing, a situation where your feet become fixed to the floor for a totally random period!
The slow progress to the starting gate (or perhaps fear of the zip-wire itself) meant that more and more people had decided they’d had enough of waiting in-line, a steady flow of people exiting the queue at regular intervals. The exit points were at their busiest when the wobbly spiral staircase taking you up to the starting platform came into view.
A considerable test of character, a sort of ‘leap of faith’ was needed to take your place on the fabricated stairs as their temporary nature seemed to make them less than sturdy! 
However, at no time did I feel particularly unsafe. Indeed, I was almost welded in to my safety suit even before the final clip was locked in position almost preventing me from moving…and breathing. What did seem a little futile though was a safety ‘hard’ hat made from the thinnest gauge plastic I’d ever seen. Certainly, I’ve seen more substantial paper hats coming out of Christmas crackers.
I’ve been a little sceptical about the effectiveness of safety equipment since Hayley and I spent our fortnight away from work in Portugal in the July of 1997.

Portugal 1997

Unless you are an avid sun-worshipper, a complete change of your daily routine can only hold your attention for a few days before that too becomes a little tired and jaded. When the walk down to the sunbeds and a dip in the swimming pool are the most exciting part of your day, it’s time to try something different.
Seeking a change of scenery, Hayley and I decided to take a cab to Villamoura. A stunning marina full of beautiful restaurants, shops and some smaller units advertising everything from boat trips to Paragliding. 
We sat and listened to a discussion between one of the Paragliding team members and a family of three. Although I believe my tolerance towards our European cousins on the whole is pretty good, when you get down the list of countries reaching France and Germany, I do have to work significantly harder to remain ‘balanced’.
 Believing the family to be German (Shamefully, based entirely on the accent of the father of the family) I nearly walked-off. The thought of spending time on a boat off the coast of Portugal in the middle of the Mediterranean, trying to make small talk with a German couple and their son not anywhere close to topping my ‘To Do list’. After a public dressing down from Hayley, ‘we’ decided to press on. I’m so glad we did! The Germans went first, surprise! 
All seemed well as he donned the safety-harness and hat before walking to the platform at the back of the boat. The parachute was connected, a final thumbs-up and he was off.
Instantly, the chute climbed into the blue sky, pulling tight every strap and clip on the harness. 
Almost immediately, in what I thought was a Germanic celebratory song, or at least a chant to the gods of the motherland the father began to turn bright pink as he bellowed out the words to this less than catchy tune.
    It suddenly occurred to me that the poor man wasn’t singing, he was in agony: but why?  All became clear when the winch being wound back in double quick time brought the poor chap back down to the boat, the safety straps hadn’t been fitted properly. In what must have been agony, two heavy duty safety straps capable of towing a 7.5 tonne truck had been passed though the man’s legs. In what must have been a ‘snug’ fit before take-off must have become excruciatingly painful the second the parachute inflated 

    I must just finish this section by stating that my identification of the family as German was completely inaccurate, they were Dutch! It’s easy to make mistakes and on the grand scheme of things the last few paragraphs, where entirely accurate, are not intended to upset anyone. Honestly, it just made me chuckle.
Bournemouth Air Show – August 2016 (Cont’d).

The group in front of us were all trussed-up and ready to go were invited to listen to the Zip-Wire launch instructions;
 “Okay ladies and gentlemen, a member of our safety team will hook you on to the zip-wire. I will count down 3..2..1, the gate will open, all you have you do is wait for the gate then take a run and jump…ARE YOU READY?   
All went well, 3..2..1, the gate opened and they were off. I was so excited as I’ve always been a thrill seeker but after my Deep Brain Stimulation (DBS) operation in August 2010 I’ve had to pick and choose the type of rollercoaster rides I go on very carefully, any damage to the hardware fitted in my head, neck and chest couldn’t be repaired easily.
    Finally, it was our turn. After what must have been a 45 minute wait we’d finally reached the front of the queue. Hardly able to contain my enthusiasm when the countdown started the poor chap got as far as 2, the gate opened prematurely and I was off!! 
I loved every second. All I could do was apologise to the 3 other members of the family who came down after me. The fact I had taken the ride despite the symptoms of Parkinson’s left me feeling fully charged for some time. Indeed, as I’m reading back through the whole episode I’m again flushed with pride on what was achieved on that sunny day in August 2016
    Sadly, despite me feeling as if I could pilot an RAF Typhoon jet fighter, the rest of the family missed the swagger in my walk as I returned to our spot on the beach only to find they’d long since decided to return to the hotel for the evening…typical! 
I’d just like to mention my extended family. Each member of ‘Team Ingram’ who are referred to throughout my book as the ‘cousins’ have at some point played a starring role in being overwhelmingly kind and considerate, often helping me in ways that can’t be easily understood by people don’t carry the burden of the disease. 

Anyone wishing to add any of their own thoughts or ideas are more than welcome to contact me on my Facebook page:

Simon Ingram

Recipe of the Month
Sylvia’s Chilli Tomato Soup

1 to 1 and quarter kgs ripe tomatoes
1 medium onion
1 medium carrot
1 celery stick
2 tablespoons olive oil
2 teaspoons tomato purée
Good pinch sugar
2 bay leaves
2 pints vegetable stock ( made from stock cubes)
2 garlic cloves chopped (optional)
Good handful fresh basil
1 small red chilli or a good pinch dried chilli flakes (optional)
Black pepper to taste
  • Wash tomatoes and cut into quarters...cut out the hard stalk bits. Roughly chop onion, carrot , celery and chilli 
  • Put olive oil in large pan and heat over low heat. When hot add chopped veg and stir with wooden spoon.   Cook gently until soft and faintly coloured.  Approx ten minutes.   Stir often to prevent sticking. 
  • Add tomato purée and stir until veg looks a bit red.   Throw the tomatoes in with sugar and black pepper.  Tear two bay leaves roughly and put in pan.   Stir everything together then put lid on pan.    Stew the mixture gently for ten minutes stirring occasionally. Slowly pour in the hot vegetable stock.   Then turn up the heat until everything is bubbling then turn heat to low and put lid back on pan.    
  • Cook for 25 minutes on low stirring a couple times.  
  • Remove the pan from the heat, stand back and take lid off saucepan.   Fish out the bay leaves and throw them away. 
  • Now you can either pour mixture into a blender or, as I do, use a stick mixer and blitz until smooth while still in the saucepan. This soup can be frozen for 4-5 months.  
  • I usually make double the quantity and freeze it to eat in the winter.   It can be eaten warmed up or chilled with a swirl of cream on the top.

We aim to...

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Brain Teaser Solution

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And Finally... One  small step for (a) man 
50 years, it has soon passed,  I chose this photo of  Astronaugt Joe O'Connor taking a break from testing an early version of the Apollo spacesuit at Apollo Mesa Dike in  Arizona. Could find no info on whether Joe actually got into space. But this only highlights that many, many people worked on Apollo and only 12 ever got to the moon.  Oh and Neil Armstrong ad libbed the (a) into his famous (scripted) words. 
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