SueWilson's PSP Journey

I hope you will join me on my journey with Progressive Supranuclear Palsy - a rare terminal neurodegenerative disease for which, to date, there is no cure. With an average life expectancy of approx 5 - 7 years from date of onset you can see why I want to raise as much money as I can for the PSP Association to help them to find a cure!! Thanks for spending these few minutes with me on my PSP Journey and please feel free to leave a donation before you move on! Thank you so much xxxxx

Progressive Supranuclear Palsy (PSP) is a teminal degenerative brain disease which will eventually affect eye movement, balance, mobility, speech and swallowing.

?P - Progressive - the disease gets steadily worse.

?S - Supranuclear - the area affected is above ('supra') the nuclei in the brain.

?P - Palsy - paralysis

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1st Sept WHAT A WONDERFUL FIRST WEEK OF DONTIONS AMOUNTING TO £300 + £50 GIFT AIDED. THAT'S 30% OF MY TARGET! THANKS TO ALL WHO HAVE DONATED. XXX

1st Oct You will see that over the past month I have raised over £4 just by using Everyclick and Give as you Live as search engines for looking around the internet. Just think what we could collectively raise if all my friends and supporters changed to this method of searching the internet. Please think about this minor change in your internet usage and how it could change the lives of those who have PSP. Thanks again for all your support. xx

1st Nov I continue to do all my web searches through the everyclick system which I do hope some of my supporters will adopt too. Noone so far has tried this easy alternative to the normal web search engines - which is disappointing as It would make such a difference to my fundraisng efforts towards a cure for PSP. We have been busy at home converting part of our garage into a Wetroom for me and its really great! Those of you with Facebook accounts can see pictures of the various stages on my wall. Thanks again for all your support!
Well, 'till next time.

1st Jan 2012 HAPPY NEW YEAR to everyone. Hope you all had a good time over the festive season. I had a great time with Trevor who cooked a wonderful Christmas lunch. YUMMY!! Looking ahead to a brand new year is exciting isn't it? What will 2012 hold in store for each one of us I wonder? For myself, I will continue to fight PSP with all my might as each day brings new challenges to my mobility and the ever present risk of falling! I am looking forward very much to the results of the Davunetide drugs trial - hopefully by the end of 2012 there may be available the very first drug for the treatment of the symptoms of PSP. I am really enjoying my new Wetroom - it has helped me so much. Well. you will see that my fundraising has reached 36% and I hope you may feel able to help me reach my target so a cure may be found to this horrible disease; Thanks for your continued prayers and support. Till next time xxx

4th April 2012 - Isn't this year just racing by? April already!! Easter is just a couple of days away now and Trevor and I managed to get to Carey Baptist Church on Palm Sunday and also to a couple of the 7pm Easter Week services. We didnt go tonight as Trev's Mum, Marjorie, was with us and it was just too much of a rush to attend. We will be going tomorrow as we are having a MAUNDY THURSDAY meal together followed by Communion - just like Jesus and his disciples did the night he was betrayed and handed over to be crucified. Each evening service begins with an excerpt from Maunder's Olivet to Calvary music. It is really strange because by the end of the week it becomes very familiar that I try and find it online as I can't always make out the words when we hear it at Carey. On Easter Sunday we are attempting to get to the 8am Communion Service (that will certainly test the PSP system alright!) which is followed by a full English Breakfast in the Church Hall. We won't be staying for the 10.45 am service as we have promised Marjorie that we will take her up to the Cemetary to take off the Christmas wreath from the family grave. She is going to spend the day and evening with us so that will be nice. Trevor and I have recently been going along to a PSP support group and are making friends with others who are there. Those of us who are suffering PSP are all at various stages of our walk with the disease and some are rather poorly, but thankfully we dont dwell on that side of things which I really appreciate as I like to be positive in my attitude. We plan to have visiting professionals come along to speak to us ie Physio/OT/Neuorlogist/ etc and an informal get-together is being organised too. Saw my own neurologiist on Monday and he was pleased with my progress and I don't need to see him again for 12 months. I will see the Parkinson's Nurse Specalist in approx 6 months' time. So I am well supported by a wondeful medical team - I am indeed grateful to them all. You may notice that my total has passed the £500 mark thanks to some very generous donations from family and friends. Feel free to add to my total if you are able - PSP Association are launching a £1 million appeal (to coincide with the running of the 2012 LONDON MARATHON) for funds towards research so a cure may be found. Well.'till next time love SueW xxx

14th July 2012 - Lots has happened since my last entry notably a deterioration in my eyesight - I find it difficult to look upwards and downwards now. However, I have received a wonderful pair of prism glasses provided free of charge by the PSP Association - they allow me to look downwards and they are truly amazing. I must not wear them when walking about as they could disorientate me and cause me to fall over - something I can manage quite easily on my own!! Trevor and I had a lovely visit to Devon in June during that really hot week we had then. We spent time with relatives and it was a truly wonderful week. We also visited East Kirkby Aerodrome on a day when their Lancaster Bomber JUST JAYNE was doing a taxi run. It was an awesome sight especially as Trevor is going to be there for his own taxi run experience on 1st August 2012. I will also be there attempting to get over the main (wing) spa inside JUST JAYNE. That will test the PSP symptoms.. I'll report on my progress or otherwise next time. We are also about to spend a three night break with a couple of dear friends in a haunted castle in North Wales. Can't wait for that!! We have just placed an order for our 2nd Motability Car - another Vauxhall Meriva - which we will change over to in early October - we are really excited about the new car and the motability scheme is wonderful in maintaining the independance of the disabled. I took part in a Craft Fair on 7th July where I had a table for my HANDMADE GREETINGS CARDS and a load of other crafty goods for sale. I was able to donate £35 to my cause following very acceptable sales on the day. 'Till next time. xx

November 2012 Christmas is coming up again really fast - just dont know where this year has gone?!! Since my last update we have had some wonderful times. The haunted hotel turned out to be really interesting with nothing at all to report in either room of a supernatural event however we did have a very brief chat with a member of staff on the final morning who confirmed that she had experienced the ghost at first hand and that it all kicked off in room 208!! We were in room 211 phew that was a close shave!!! We really fell on our feet when we had to find alternative accommodation at the last minute in Woodhall Spa for our JUST JAYNE taxi run on 1st August 2012. We found a really great B&B at Stone House Lodge run by Tracey Kemp who was a wonderful host during our two night stay in The Typhoon Room- all the rooms are named after aircraft - the typhoon room is on the ground floor which was just perfect for me. Tracey even came in early on the taxi run day to make sure we had breakfast in time to get to East Kirkby aerodrome for 9.15am. The day was truly amazing and very well organised. Trevor was booked on the morning taxi run so following a mock briefing, as in WWII, Trevor got a close look at the inside oF NX611 JUST JAYNE Lancaster Bomber. Then the four engines were started up, an awesome sound, and off on the taxi run he went standing behind the pilot, no less. On their return an official photographer stood by to take pictures of each visitor leaning out of the pilot's window with thumbs up (a lovely keepsake of the day).now it was yours truly's turn to explore the inside of the bomber! I was determined to sit in every part of the aircraft, particularly the front and rear turrets and to make it over the main spa -I am pleased to report that I DID IT!! WithTrevor's help I not only got over the main spa but actually laid down in the front bomb aimers position and much to the consternation of the pilot i managed,with a fair amount of grunting (!) to sit in the cramped rear gunner position! I was also snapped by the official photographer leaning out of the pilot's window, so we each have a keepsake of a truly memorable day.
We spent a week in Yorkshire with our good pals, Dawn & Torq - it rained non -stop for 36 hrs which confined us to base camp but it didnt spoil the week as we are so comforable in each other's company that it didnt phase us at all. Good friends are helping me to cope with PSP and the daily challenges that it brings into my life. On October 10th we took delivery of a lovely new car, another MERIVA 1.7 CDTi. Our first Diesel engine car so Trevor has to be careful at the pumps in the Petrol Station. It is a lovely car without a handbrake - this has really tested my clutch control - i have stalled the car numerous times, much to Trevor's chagrin!! I will keep practising. Trevor celebrated his 60th birthday on 7th November and we celebrated with a meal out on the day and took a trip over to the Dambuster Museum at RAF Scampton which i will report on in my next update. Thanks to you all for getting me up to 82% of my total fundraising target. 'Till next time. Much love SueW xxxx

14th Januay 2013 - HAPPY NEW YEAR!! Hope everyone enjoyed Christmas - it seems such a long way away now. Well since my last update I have bought some new glasses - I was eperiencing double vision and I happened to mention this to my Optometrist at Boots Opticians and she prescribed a wondeful pair of reading glasses with prisms in them and hey presto(!) the double vision is completely gone. It has made such a difference especially when using my laptop - I was starting to think it was yet another enjoyment PSP was going to deprive me of. Our trip over to RAF Scampton was very good - we were met at the gate and escorted to and back from the museum as Scampton is an operational base. The museum was small but crammed full of the most wonderful pictures, photos and memorabilia from the Dambusters Raid. We were also priviledged to have a look at Guy Giibson's office, climbing up the1940s staircase to get to it! You can see from the office window the grave of Gibson's faithful dog, Nigger, who was killed by a passing car just outside the gates of the base on the morning of the day the Dambuster Raiders were due to set off.. Gibson asked that his dog be buried at midnight, the exact time when he would be flying over the Dams. Nigger's grave is beautifully cared for up to this day with flowers planted around his memorial stone and the whole gravesite is surrounded by tall metal railings, with a door to gain access. I went around the museum on my electric scooter and only managed to dirve into a couple of walls! The doorways were rather tight as well. We came away feeling very grateful to those brave crews, many of whom didn't make it back home the next morning. With much regret, I have to report that I have had to finish driivng - PSP has sadly robbed me of my driving ability and spacial awareness - last time I drove the car I managed to really unnerve poor Trevor who said that I should consider stopping sooner rather than later - he always said that he would be honest about my driving ability and he is absolutely right - to be truthful, I was no longer enjoying driving as I used to - so the decision has been made and I am feeling content. Yet another recent acquisition is a sweet little electric wheelchair which is helping me to get around downstairs at home, something I had been struggling with over recent months - my knees were really sore from all the stumbles and falls I was having in the lounge and kitchen - its great 'cos I just whizz through those rooms now I have wheels!! You will see that I have increased my fundraising target to £2000 for 2013 and that some recent donations have tipped the total to just over the £1000 mark so please, if you are able, feel free to add to this total through this coming year. With grateful thanks for your continued support and prayers. Till next time love SueW xxx

8th April 2013 I can't tell you how glad and thankful I am to see the back of all that snow - talk about being stir crazy not being able to get out of the house for days on end, I just hope that's the last we see of it for this year!!

I have to start this update on a sad note - I lost two dear friends in January and February this year. Firstly, my dear friend of over 30 years, Sylvia, who was found dead at her home by the Police who had to make a forced entry. We were alerted that all was not well by a telephone call from Sylvia's relatives in Australia who had been trying to get her on the 'phone but without sucess. I had a key to her house so we went round that afternoon only to be told the sad news by her next door neighbours. I was asked by her Minister to say a few words about our friendship at the celebration service for her life. It was a daunting task for me as PSP has taken its toll on my voice but with Trevor's support I managed to get the words out, although I said them too quickly, I feel.

In February came the sad news that another dear friend, Margaret, had passed away. I met Margaret just a few short years ago when I had my original diagnosis of Parkinson's Disease (PD). Sadly, in recent years, Margaret had been struck down by PD Dementia and from all accounts it seems to have been a blessed release for her when she finally passed away. Her funeral service at the local Crematorium will stay long in my memory as it was based on the spirtuality of the Native American Indians. She was sent on her way through the curtains to the sound of native american drumming courtesy of a group of her friends all playing their drums. It was also my first experience of seeing a Whicker Coffin - quite a send off!!

Now, on a much brighter note, I am happy to announce the safe arrival of HONOUR GRACE, a daughter for my Nephew Stephen and his dear wife Victoria (Vicky). She was born on 22nd January and weighed in at 7lbs. She is absolutely gorgeous and is now making eye contact with us all and she smiles and laughs. She is a real tonic for Trev's mother Marjorie who is of course her Great Grandmother. And for me too, her Great Auntie Sue - makes me sound like a barrage balloon!!

In recent weeks I have had two donations from couples whose names don't immediately come into my mind - I am truly humbled by their gifts to my cause. If you feel able, please don't hesitate to follow their example and if you happen to be a UK Tax payer, make sure you complete the Gift Aid Declaration to get free money from HM Government to enhance your giivng. Well, 'till next. time. With thanks to you all for your continued support and prayers. Much love SueW xxx

July 2013 What can I say but WOW can't believe that its July already it doesn't seem five minutes ago since we were putting up the Christmas decorations!! The only major thing that has happened since I wrote my last entry in April is that I had a fall in the kitchen and managed to dislocate my left shoulder - MEGA OUCH! Trevor quickly got on the phone and dialled 999 to get an ambulance which duly arrived and the two ambulance people were so caring and compassionate and after some intravenous morphine and gas & air (wonderful stuff) I was whisked off to A&E where after a lot of pushing and shoving they got my shoulder back into place (traumatic is the only word for it!). We got back home at 11pm and since then Trevor has had to shower me and help me with toileting as my arm was so painful I couldn't do anything without help. I can now report that following some physio exercises my shoulder is becoming less painful and has stopped cracking too!

Didn't Andy Murray do well at Wimbledon last weekend. It was truly thrilling to watch, wasn't it?!!

I do hope that you might be in the position of donating to my cause and, if so, don't forget the free money from HM Government if you are a UK taxpayer and complete the Gift Aid declaration at the time of making your donation. Well, 'till next time - thanks for your continued thoughts and prayers - we both really appreciate them, you know. love SueW xx

September 2013 For my birthday in August Trevor treated us both to a night at Fawsley Hall near Daventry which included a wonderful afternoon tea in the Great Hall and a scrummy evening meal.We travelled up to Aberdeen during Sept 2013 to visit our dear pals Dawn & Torq Allen. We went to the cinema to see RUSH the movie about the Hunt v Lauda fight for the 1976 world F1 Championship which was very enjoyable. The last few days were spent visiting the ISLE OF SKYE a new place for the Wilsons it was lovely scenery with dramatic low cloud covering the tops of mountains. We used the Skye Road Bridge to travel over the water, which was a doddle.

October 2013 We spent a very relaxing weekend at the Crown in Playhatch near Reading, Berkshire with our good friends Angela & Graham Bates - great company, great food and lovely accommodation. This trip completed our Wilson Wanderings for 2013.

November 2013 Trevor celebrated his 61st birthday with a meal out with his Mum and I. I organised a Lancaster Bomber shaped cake which was a chocolate cake which kept us going for days!!

December 2013 I was admitted to Northampton General Hospital for three days following a bout of chest pain and rapid heart beat (tachycardia). While I was in A&E. I was put to sleep and they zapped me with Defibrilator paddles and I awoke pain free with my heart beating normally again, thank goodness, I thought, naively, that I could now go home but no chance! The next day I had wires put into my heart via my right wrist and an ultrasound of my heart - thankfully, both tests showed up as normal with no damage to my heart. It remains a mystery as to why I got such awful pain when at rest so I was discharged with an under-the-tongue spray in case the pain (angina) returns and I now have to take a beta blocker tablet and 75mg dispersible aspirin each day. The day after Boxing Day saw Trevor and I once more in the Heart Centre this time for a monitor to be fitted in order to check my heart for a 24 hour period - I await the results of this particular test. Oh well, its something to occupy my mind instead of the PSP for a change!!

2nd January 2014 Happy New Year and a healthy one too!! Well that's another Christmas I have made it to and it was truly enjoyable. Our decorations came down today and our room(s) look quite bare. I do hope you may be in a position to once more donate to my fundraising effort during 2014 towards finding a cure for this awful disease called PSP which seems to daily rob me of yet more mobility and independance. DON'T FORGET THE FREE MONEY AVAILABLE TO TOP UP YOUR DONATION FROM HM GOVERNMENT IF YOU HAPPEN TO BE A UK TAXPAYER AND YOU REMEMBER TO FILL OUT THE GIFT AID DECLARATION SECTION AT THE TIME OF YOUR GIFTING. With our grateful thanks for your continued support, thoughts and prayers that really do keep us going, you know. 'Till next time love SueW xxx

AUGUST 2014 "60 YEARS OF LIFE" On 20th August 2014 I celebrated my 60th Birthday!! Quite a milestone. I thought you might enjoy some highlights from my "60 YEARS OF LIFE,". Hope you may not be bored and that you may find it amusing So here goes:

I was born on Friday 20th August 1954 in Tyne and Wear. up North.

Two early happenings of which I have no recollection:

(1) My Mam said to her sister one day "Do you fancy going into the town (ie Newcastle) this afternoon?" Auntie Nancy replied "What about the bairn?" [Translation: The Bairn = the baby = yours truly]. SHOCK HORROR!!! Mam had left me in my pram inside the Co-op where she had been shopping earlier. There i was apparently quite oblivious of the panic around me! Mam wasn't used to having a new baby with her as there was a gap of 6 years 8 months between my older sister, Janet, and me - poor Mam.

(2) My young cousin, Billy, was pushing me along the back way in my pushchair. In the distance he sees his Mam and takes off running to meet her. After a short distance the pushchair is slowing him down, so he abandons it (!) and keeps on running. Needless to say the pushchair hits the kerb and upends. Thanks to the harness I was strapped in with, no harm was done, apparently!!!

IN PROGRESS - TO BE CONTINUED ...........

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