Visit to Memory and company

To day with assistance from Ron Belen we have scheduled a tour of the MEMORY AND COMMUNITY HEALTH CLUB
We will be seeing Canada’s Premier Care Program and Health Club for individuals with Memory / Dementia Challenges and their care Partners ( although they tend to use Care Givers here in North America )

We will be arriving near the end of the day Ashley and her team are focused on every aspect to create wonderful experiences at Memory and Company which involves close attention to Sensory Challenges

We then will share diner chat and exchange knowledge
Rebekah is involved in the International Dementia Community (her grandfather had dementia) Rebekah is also involved in the World Young Leaders in Dementia network we have many friends in common Kate Swaffer DAI AND Kiki Edwards

Rebekah has kindly agreed to take photos on my I pad for me so I can relax and just enjoy the experience

Donna and went for a walk to get our bearings of downtown Toronto it was a cold day we went to McKenzie House then St Michael Cathedral
A candle was lit for Helen

On the way back we saw a squirrel and Ryerson university then it was time for soup and ready for the Uber Taxi
Thursday 4:30 we get our uber taxi to take us into the suburb district to meet up with Ashley and her team at Memory and Company

Her husband Victor is a police officer yet together they have created this wellness club were people with Dementia can join and be involved in their facilities

I was so impressed it looked like a high range members club I was glad Rachael took some videos because their was so much feel good experiences

The sense of freedom the varied rooms that stimulated playfulness reminiscence the music room my spirits soared there was no clinical hospital feel to it everything became a pamper
The language being used was giving me a feeling of wellness safety and being special
The staff could and would bathe shave to relieve and free the care-partners of tasks removing lots of stress

The kitchen area was open plan food was colourful fruit or cake to nibble on the space was open so two walkers could safely be there side by side coroners were rounded

There was water and juice in a clear glass available at all times safety measures had been looked at addressed but positive risk taking Victor had installed sensors on fridge on outside doors the use of easily bought on high street IT they had paid attention to keeping their members safe but not obviously restrained or restricted

The entertainment room was a dream no institutional feeling it felt luxurious being spoilt made feel special it was like going to a select upmarket premier showing.

The screen was connected to the internet very IT savvy

The games room had lots to offer

Yes there was an outdoor space with a barbecue in summer the door is open

Lots of natural light in this special place creating a sense of space freedom and contentment
oh I could go on and on I will need to digest what I saw could this be replicated I hope so
Would I as a person with dementia become a member YES PLEASE because for causal visitors there was no sense that this was a dementia specific facility.

Posted in Uncategorized

Arrived safe in Durham

Arrived safe in Durham all went according to plan Rachel was waiting for me as my train arrived

we booked in to our Hotel then walked to see Durham Cathedral a fleeting visit but it did not disappoint

I loved the feel the beautiful stained glass windows  I must come back to fully appreciate the Cathedral and other buildings

this photo is of the sanctuary knocker WOW

we then carried on walking to the Radison Hotel were the FPOP conference will be held it was good to walk as we both had been sitting in the train for hours

now it’s down to collating who will do what at our session

the noise from the music was overwhelming for my Hyperaccusis I asked the staff member if they could isolate an area with no music but no it appears to be all or nothing

Work needs to be done in this area for hotels resteraunts to accommodate all

I have a human right to be able to sit comfortably in a hotel

we had only just begun our talk on our strategy whe Keith Oliver and his wife appears the joined us and then it was Reinhard then others next we know we are off to have a Italian meal together what a great way to commence what looks like a great conference

the meal the meeting old friends and making new ones

Rachel and were challenged finding our way back to hotel but friendly people helped us

what a lovely end to Tuesday so looking forward to tomorrow’s conference

Posted in Uncategorized

Travelling to Durham on Tuesday

I realise how much I depended on Donna to get packed and ready on the day of Travel but she phone several times she talked me through processes prompted me and it worked fingers crossed I have packed all my necessities oops

I’ve only just realised that I have forgotten to put the Sensory booklets  in my case

at least DEEP has them for their stall



First. Train takes me to Glasgow Queen Street the Sun is shining and Glasgow is getting crowded


My next train leaves from Glasgow Central Station were I have assisted train travel booked and it worked the nice train conductor escorted me on to the right train and my reserved seat


Donna phones to see if I am OK

Rachel is meeting me at Durham Station I am looking forward to having a catch up and chin wag

Posted in Uncategorized

Liz arrives to help me

IMG_4694I’ve started to sort out my filing system before Liz arrives to help with this weeks diary, e mails and coming events




After a cuppa coffee we get started


Parliament Talk , tickets are already done ✅
Donna has e mailed confirmed hotel in London

I’ve selected my outfit so it’s just packing
After we answer e mails I need Liz to replace ink as we need to print off replies etc and file these appropriately
We discuss my Alumni work what meet ups I am doing tomorrow re Dementia and self management

We have a working lunch



Then it’s on to the Churchill Fellow report I am struggling with the how of this we do some mind maps then before we know it it’s time for Liz to leave



thankfully My kitchen and table is clear
My filing system is moved to my bedroom



This is a great help to have someone to talk over my Challenges to get my needs meet so that I can continue to campaign contribute and remain a dementia advocate

this frees Donna’s time to concentrate on being my daughter




Posted in Uncategorized

Walking from our Hotel to the venue thanks to Donna we arrived just in time 

We meet Chris Norris a person with Dementia at the door I got a lovely hug which made me feel welcome and at home 
At registration Rob Daniels welcomed us and took us to the DEEP stand to meet Paul Thomas the DEEP representative then Angela Rippon come and said the event was about to start 

Angela Rippon then opened this event then introduced Gina a person with early onset Dementia and who spoke next 
At the Dementia Friendly session Angela Rippon announced that The Royal household is now going to become Dementia friends 
A lively question and answer session ensued Angela promised to write a letter to back National companies asking them to make sure that the Dementia friends will filter down to local as I am an action person so I liked this action next talker was 
Andrea Sutcliffe As a regulator we cannot do it alone Care Quality Commission 

Alistair Burns talks of a multiple diagnosis not just cognitive 

Then I liked this slide ending in WELL 
Dementia has to treated as a medical health condition let’s get it recognised as such 

It was great to see people with Dementia Chris, Tracey, Peter also our friend a great support from Rheinhard Gus Clinical Psychologist  

Our session went well lots of good questions were asked we gave Sensory booklets to all who attended and a few asked me how they could get more booklets We also spoke of PEER SUPPORT and the DEEP NETWORK 

Unfortunately Donna my daughter borrowed my I pad and I have no photos to remind me of the other happenings at this event 

I know I felt I enjoyed it because when I think back I have a good feeling if no cognitive Memory 

Posted in Uncategorized

Thursday event Govconnect 

Walking from our Hotel to the venue thanks to Donna we arrived in time

We meet Chris Norris a person with Dementia at the door I got a lovely hug which made me feel welcome and at home

At registration Rob Daniels welcomed us and took us to the DEEP stand to meet Paul Thomas the DEEP representative then Angela Rippon arrived and said the event was about to start
Angela Rippon then opened this event then introduced Gina a person with early onset Dementia and who spoke next Gina then remained on stage to answer questions

Angela Rippon at the Dementia friends session announced that The Royal household now going to become Dementia friends
A lively question and answer session ensued a question was asked why was the national companies who are signed up to Be

Dementia Friends not filtering to the local level

Angela promised to write a letter to the National companies to filter down to local

I am an action person so I liked this next up was

Andrea Sutcliffe As a regulator we cannot do it alone Care Quality Commission

Alistair Burns talks of a multiple diagnosis not just cognitive

Then I liked this slide ending in WELL
Dementia has to treated as a medical health condition let’s get it recognised as such

It was great to see people with Dementia Chris, Tracey, Peter and they asked about our rights and how it should be embedded in all that us done at all levels
After lunch It was our Dementia and Sensory session and talking about PEER SUPPORT and DEEP network this went well all the Sensory Booklets were handed out and people were asking how they could get more

Posted in Uncategorized

Wednesday 12th travelling to London


To day Donna and I travel by train from Scotland to London to attend the Govconnect Conference 2020 Implementing the challenge 13th April 2017 Royal Society of Medicine London

We are bringing the Sensory Booklet with us and hoping to share the knowledge we found out About Dementia and Sensory Challenges from my Churchill Fellow


On Thursday 13 th April I will be co facilitating a workshop with Paul Thomas

One of the questions we will be asking is

Not everyone wants or receives Post Diagnostic Support and the long years of Self Management can feel like a ” Black Hole ” Dementia is a disability included in the UN Convention of rights for people living with a disability other people affected by a disability have the right to be supported to live independently

How can the right to supported independent living be respected for people living with Dementia









Posted in Uncategorized

So excited it’s time for another meet up with Liz

IMG_4570IMG_4568.JPGSecond  Monday meeting with Liz 10/04/2017 

I am so looking forward to meeting with Liz I have looked out all paper work

Done a mind map to prepare and keep me focused ( Ha ha )

I have so much information and e mails to get sorted and filed away

I had my in box cleared leaving only a few for Liz and I to talk over but more came in as Liz was here needing answered

This was good as it means things are being attended to quickly

We deal file and I forget until the relevant time

Less time for me to stress

Let’s not forget some food so I made rolls in the morning before Liz arrives and have biscuits 🍪 it takes me so long to do this that it’s better if I plan ahead making good use of Liz’s time

I no longer multitask so have learned to take it one step at a time

wow 😳 time has flown it’s now 4pm and Liz is on train home we covered so much



My case is out ready to pack my talk is timed as I am leaving to travel by train on Wednesday 🚂 with Donna for a GovConect event

This is working out so well for me I feel less stressed more ready and As I’ve always been a perfectionist I feel I have given of my best

Posted in Uncategorized

Liz arrives to help sort out my diary

IMG_4551.JPGLiz from ECRED arrived as planned to look at my diary and help sort out my campaigning and planning for the next 3 months

I have found it’s getting harder to campaign raise awareness and keep track of all that I do and I am taking up a large amount of My daughter Donnas time managing my diary and making travel arrangements 

I am not sure if any research or notice has been done on the amount of time and effort it takes out of a person with Dementia’s life to plan prepare campaigning events to keep your diary correct etc and still have a live outside campaigning 

to get the balance right 

What a marathon but diligently and methodically we pushed on till it was done

I made a folder with e mails that confirmed all my commitments

Hopefully this will free Donna to have time with her husband and still care manage her Dads dementia journey

Liz left after 4pm to catch her train to travel back to Edinburgh I had brain ache due to the concentration it took

Donna felt relieved that it had happened and the diary was fixed copied and Liz was taking a lot of the strain

Donna and I meet up with her a Dad we had a meal to celebrate then an early night

Thank you to all concerned who saw my dilemma and made a plan to solve the issues

Posted in Uncategorized


                          Some photos of our Time at Inverness gathering


Travelled by train to Inverness on the Wednesday meet up with James Maureen in Perth to. Change trains what a rush the signposting to station 5 was poor especially as we had to use the lifts

Great getting to know you session and down to some work

Thursday another fabulous morning good outcomes

I made some lovely new friends and pledged to do some work with Pat Sue And myself

Re IT use in between meeting having. (Virtual Lunch meet ups).

Next leg of the journey is Stirling we are staying in the Golden Lion Hotel to rest before a Friday event on SELF directed Support

Lovely hotel I was so tired so glad I slept very well it was heavy rain but found the Albert Hall only
a walk away


              Above some photos of the SELF DIRECTED SUPPORT information day 


The meet and greeter at the door was a well Kent face and friend Yvonne Stewart which made me feel at home also a having a cuppa was a bonus which set the scene to a really inspiring talk and sharing information in Self Directed Support so much information to digest but made new connections and help on the HOW to take the next step to applying for Self Directed Support
Also inspired to find Allies in Coatbridge to help our family in getting their needs met

Exhausted but it was worth it back to the hotel and bed

Saturday 1st April

A great time spent at the Ladies lunch good food and my talk on Think Dementia Think Sensory went down a treat

I shared all about the DEEP NETWORK to the co ordinator of Town Breaks so will connect them up with Paul

Donna once again getting help and suggestions for with her carers issues

I have found a quiet area waiting on Donna joining me to catch a train to Glasgow

It’s been worthwhile making the effort to participate over the last Five days


Bye bye Stirling I was made so welcome by everyone

Posted in Uncategorized
Past Events