A poem about  our Parkinsons group

Why do I love this group?
So, why do I love this group? the answer is easy,
Why, It`s the fantasticle group members of course.
from all over the world they find us then ask to join,
most then stay with us, we hope with no remorse.

The admin team, well we are a proper mixed crew,
we have Ellis the menace who loves the group meets,
loves pasties and cream.a true friend of mine
we have a good laugh, though we can disagree,
to the group she is loyal as most of us will see.

And then we have Paula,with the creative bent,
she loves baking cakes, and is the group socialite,
she is a loyal friend, and a good team player,
cross her at your peril, and to Coventry you are sent.

And we have `S `what can I say, she is cool.
The methodical one, not much gets past her.
a wise head on those shoulders, a scientific head.
She gives excellent help for those that ask her,
a close friend of mine, we often talk a great deal
good advice she will offer, but will suffer no fools!

And now we have Russ, the new kid on the block,
he is finding his way, being admin is not that easy.
The young onset big `P` that`s his great motivation.
His determination and vigor should carry him far,
fighting for justice that the young onset deserve.
I think old established opinions are in for a shock!

Who else is there in the admin team, oh yes it`s me,
well, what can I say, that hasn`t been said?
I will fight for group members, you are ALL my friends.
So proud of this forum, and the way it has grown,
we have a good laugh, alongside all the woes
this group is an outlet from our daily grind you see.

So there you go, I have been on a roll,
this poem is nothing like I intended it to be!
It was going to be about you the members you see,
but, another day another rhyme 2 hours this has taken.
Just to say you guys all rock and the other admins too,
It`s given me a focus, taken over my life,
We may have the Big P, but he doesn`t have us,
together we will fight, we will shout, and we will cuss!
TJB 24/3/17 (c)

A poem

1. When you're alone with nobody to share,
   It`s so easy to assume there is no one to care.
   These long dark nights they drag on and on,
   these are the times you really need some one to share.
2. ...
3. Someone to share those feelings of fear and dread,
   those horrid dark thoughts going round in your head.
   you yearn the power of the comforting touch,
   those soothing few words than can mean so much.
4. You recall those days of ambitions and power
   that huge salary, foreign holidays and status,
   the happy family, the dreams and wishes for your kids
   Now those dreams wash away like soap suds in the shower.
5. Away they run go those ambitions and dreams,
   an endless trickle of hope, disappearing down the drain,
   Parkinson`s you son of a bitch, you deprived me of this,
   now pills replace those dreams and ambitions,
   and dependence and despondence alongside the pain.
6. The glimmer of hope that some day that cure will come
   a magical pill that may reverse the damage and hurt.
   We live in hope of that elusive pain free dawn,
   to ditch the pills and fear in place of happiness and fun.
7. So I have made it to dawn and I`ve taken the pills
   I have logged into our group and said a cheerful good morning
   We are an elite community of strength and hope
   we laugh, we joke, we share good times and bad,
8. You know what? you guys give me that strength, that hope,
   the determination to keep going towards that elusive cure.
   It may not be in our lifetime but we will have left our mark.
   I just know that being among you - I CAN COPE!!
9. TJB 18/03/17 (c)

Spring is in the air

Well, we are over half-way through February now and spring is certainly in the air here in Cornwall UK. It`s very mild, perhaps too mild and no doubt mother nature will give us a reminder she is in control before the spring is out!

First some good news (touch wood) regarding the pancreatic cancer. The latest blood test showed a slight increase in the markers they use but still within normal parameters. Dare I hope I may be in the 5% that reach 5 years post whipple surgery with no sign of re-occurrence? I know its a very thin line I am walking we have all heard of the famous names we have lost to this cruel disease over the past couple of years, but the fact is I am still walking, camera in hand, with my 2 Jack Russell's  (the hooligans) in tow!!

I have mentioned before how I am convinced these two guys have helped in my recovery as they still need their walks each day so the need is there for me to get motivated and get out in the fresh air. We have a choice of locations from the beach(es) to the woods, to the cliff path, we are so fortunate to have this on our doorstep.A link to my flickr photo site, https://www.flickr.com/photos/tjkernow/with/7840140738/  it is under a bit of a spring clean at the moment, I have taken out over 100 older pics so I can refresh it before I add some newer photos.

As to where I am with this Parkinson`s disease, well that`s a different story. I realised recently just how different my mobility really is compared to just a year ago. While I remain independent and as active as this body of mine allows, I realise I shuffle a lot more after sitting for a while, making me aware of health and safety ie catching my foot in the rug which could trip me up leading to a fall. I also need to be aware of turning too quickly as that can unbalance me, sometimes I feel like a younger man in the body of an older person. I notice it too when I am out with the dogs, I get so far then suddenly it feels as if I am walking in thick mud and it becomes an effort to keep going, so consequently I am more careful where I go.
Another area of deterioration, is turning over in bed.   I must try and find out what is available to help me, I find I sleep more on my right side, and when I try and turn over I get an horrendous gripping pain in my right hand side this is due I am told to the cancer surgery and the pain is caused by scar tissue. I don`t want to reach the stage where due to pain, I am unable to get myself out of bed! I do have a pendant I wear around my neck so it links to  lifeline, but I would be so embarrassed to have to contact them for assistance because I was stuck in bed!!

Our parkinsons support group continues to go from strength to strength,
 https://www.facebook.com/groups/490857204425819/ If nothing else we are making lifelong friends with people who truly understand the bad days and folk can have a good moan if they wish in a safe environment. We recently had a saying posted in the group, "I love my laptop, all my friends are in there" how true this is and one major benefit of the internet must be how it shrinks the world and we can communicate in real time with parky friends worldwide.

I am waiting for an appointment with my new neurologist who specialises in parkinsons, and I hope will have a greater understanding of how this disease is affecting me and perhaps change my medication accordingly.  Well, this has been a brief update, do please look into our facebook group_ THE PARKINSON`S SUPPORT CHAT AND SOCIAL COMMUNITY, we are now 1,000 members plus and still growing.

Take good care of yourselves and thanks for reading this little blog.

Tony.

Into 2017 What lies ahead?

 I was greatly saddened today by the untimely death of British actor John Hurt from pancreatic cancer. It brings it home that this nasty cancer makes no distinction between famous or infamous, rich or poor, deserving or undeserving, and shows with a slap, the fragility of life.

It has a poor survival rate and days like today emphasis the need to give thanks for our families and friends, and how even though I am over 2 years post surgery, I cannot be complacent. I go for my blood tests on Monday,  and see my oncologist in a couple of weeks to see if my blood marker levels are still low or increasing. I am often asked how I feel, and the answer is still in some discomfort especially on my right side, and I am having increasing episodes of intense nausea and sickness, but I do not know if this is cancer or Parkinson  related or a mixture of both!

I have managed to change my Parkinson consultant to one who is a Parkinson specialist so I look forward to meeting her in due course, it means a slightly longer travel to appointments but I am sure my care will be improved as a consequence.This demonstrates how we are ultimately responsible for our care and if  we are unhappy with the care from our consultant then do something about it, be proactive and take charge of our care otherwise we get lost in the system.

Our Parkinson's nurses in Cornwall, are far easier to contact and while they do cover a large work load, they are reactive and only a phone call away. I have seen a marked deterioration in my movement due to the Parkinson`s Disease (PD) it takes me a good hour to start walking normally (for me) in the mornings, strangely enough not as bad if I have had to sleep in my reclining chair rather than my bed. I tend to walk with a shuffling gait first thing and a lot of lower back pain, but once I take the Madopar and Tramadol, followed by the Rotigotine transdermal patches which has just been increased to 8 mg (2 x 4 mg) to see if my tremor in my left side settles down a bit. It is amazing how my tremor increases even talking on the phone or in any stressful situation. Distraction techniques tend to work when this happens, it may be headphones and music or just a brief dog walk which settles things down.

Luckily my love of going out in the car to the coast path, beach or woods with the hooligans (Max and Perdy the Jack Russell's) is not too badly curtailed though I need to be extra vigilant as I have had a couple of potentially nasty tumbles whilst out and about so not a good scenario if I were on the coast path when it happens!!

I am continuing with my book, based on Cornish myth and to this end as I am having troubles typing at times as my fingers keep missing their designated key while typing so as a consequence I am spending as much time making corrections as telling a story! I have invested in some speech recognition software (Dragon v15) which is now installed and working to an extent. It takes time to `tame the dragon` so it gets used to my style and my pronunciations, never mind my Cornish accent, so I do get some rather interesting interpretations of what I spoke going onto the laptop scree at times!! However I persevere and no doubt next time we meet in this blog I will be singing its praises..... honest I will!

Before I close, some of you will know of my involvement with a fascinating facebook Parkinsons support group , The Parkinson`s Support, Chat, and Social Community. ( https://www.facebook.com/groups/490857204425819/ )  Our membership is now in the 900 mark and growing. We are having a weekend get together in June this year 17th /18th and we we be doing a sponsored walk up Snowdonia raising funds for Parkinsons UK  www.parkinsons.org.uk/ Some will get to the top and some will only manage a shorter distance, but we are giving it a good try.

If you feel you could support us, please use this just giving link https://www.justgiving.com/fundraising/Michelle-Ellis7?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Michelle-Ellis7&utm_campaign=pfp-share  copy and paste into your browser.

 Michelle Ellis is a group admin and we decided to use this one page for just giving donations. All th money raised plus the gift aiding will benefit Parkinsons UK and the support and research they provide.

Well, I need to get the Sunday roast completed to feed young Gemma so I will sign off for today, Thanks for taking the time to peek into my life with Parkinsons and Cancer, please share this blog with anyone you think may be interested, and thank you from the heart for your support.

A Happy New Year One and All

Well here we are again, at the end of one year and the new year full of hopes and wishes only hours away. It has to be said that this time two years ago I could not confidently look forward to seeing 2017 as I had just had my cancer surgery and we all know the severity of pancreatic cancer survival rates. However this stubborn old sod is still here and kicking, but not taking life for granted as  I may have done a few years ago. A walk on the beach with the dogs is a fresh experience now every time I manage to get there.  I take them to the woods and stand there and listen  to the sounds of nature and its wonderful.

I am of course fighting Parkinsons disease also which brings its own challenges on a daily basis., You will know  I am I am heavily involved  in the most wonderful Parkinsons support group which joined in its infancy, and the then  owner passed the mantle to me to take it forward. With the help of my fellow admins we have done so and between us we have developed a Parkinsons support group which is supportive, caring, informative and we also have a laugh. This group, https://www.facebook.com/groups/490857204425819/  THE PARKINSON`S SUPPORT, CHAT AND SOCIAL COMMUNITY is now recognised as one of the best Parkinsons support groups on Facebook. I am convinced that it is our mix of serious day to day issues that we cover mixed with a social side is what gives us our edge. There are many such groups on  facebook and each and every one does an excellent job which is offering support and a safe area to vent our frustrations and feelings about having Parkinsons, while offering support to carers also. As we say we are all walking the same road together so we find a group that best suits our needs.
As I look forward to 2017, as a family its going to be a busy one. my son gets married to the lovely Christy and I wish them many happy years of fun and adventures together, as we know the road has bumps but they have the strength and love to cope. My daughter who has a learning disability officially leaves home in the spring as part of her transition to semi independence, so I will need to adjust to a new life myself while still being involved in their lives, but I am finding this transition rather difficult and a bit scary if I am honest. Of course I have my 2 little Jack Russell's Max and Perdy to keep me company and they force me to get out walking on a daily basis otherwise I may be inclined to just stay in all the time!
So, I will continue this blog as I face my health demons, and I will continue to help our facebook Parkinsons group grow and develop. I have made lifelong friends in this group and for that I thank each and every one of you.

From my family, to yours we wish one and all a happy and healthy new year, full of happiness and the strength to face struggles with humility.

Tony. 31/12/2016

Christmas is Looming.

Well, Christmas is almost with us again, and will be over and done with in a flash. Two years ago I had just been discharged form Derriiford hospital in Plymouth following my whipples procedure for pancreatic cancer.

In the months prior to the 7 hour operation which was literally a life saver for me, I could not look ahead to seeing another Christmas, but here we are the third Christmas since diagnosis and surgery and a difficult 6 months of chemotherapy. I fully appreciate how lucky I have been to survive the surgery, and at the last check with my oncologist although still experiencing some discomfort and pain, he could not see any evidence of cancer spread. I know the odds are against me however as pancreatic cancer is one of the more difficult to cure, and on paper the odds of making five years post surgery is around 2% so whilst I am in the middle of this `danger` period I continue to embrace life as much as possible within the constraints of my Parkinsons disease.

Having two major diseases is of course not unknown but it is extremely bad luck, and while the cancer and potential spread is never far from my mind, I have to deal with the day to day   limitations of having Parkinsons. I can tell it is having a detrimental affect on me, as I suffer with insomnia I no longer except on very rare occasions manage a full nights sleep. As a rule I sleep for 3 hours max then I am wide awake. What tends to happen now is that I will get up and have a cup of tea and watch some tv or do some admin bits in the Facebook group I am proud to be a big part of  The Parkinsons Chat and Support Group.

Being part of, and an admin in this group   has without doubt given me a purpose and a focus and I have made many new friends all of which have Parkinsons or care for a family member with the disease. We attract a membership from all over the world, and while there  are many similar groups on Facebook, one thing I believe makes us stand out is while we embrace, discuss and support issues around Parkinsons we also have a social side too where we can forget the drudgery of the disease and have a good laugh at and with each other. We greet each other in the  morning  and we notice if someone who is normally a regular has been quiet for  while so we message them to check all is well.

I do believe that this group helps many others as well as myself as we are part of a family and we know the issues of living with  this cruel disease so we can genuinely empathise and understand the pain, frustrations and the taking away of our independence we are all experiencing. The group members never fail to impress me, with their kindness, willingness to greet and support new members and to make them feel part of the community. Some join and leave again quickly to find one of the other groups to better suit their needs, and that is ok, at the end of the day we are all doing a good job and we walk the same road together.

Well my daughter Gemma is getting excited about Christmas and we look forward to seeing my son between Xmas and New Year for a few days. From my family to yours we wish everybody a very Happy Christmas and hope for the New Year. Our future may be a little uncertain but we battle on regardless. We have a saying, "We may have Parkinsons, but Parkinsons doesn`t have us"  and long may that continue.

Thank you for reading this and feel free to share it with other people who may be interested.

Tony 13/12/2016

A long awaited catch up

Well it`s been a while, life seems to have got in the way of me doing regular postings so it is high time that changed. One of the biggest things going on has been the success of the Facebook support group I am involved with , Parkinsons Chat and Support Group,  this is the link: https://www.facebook.com/groups/490857204425819/ or just search Facebook for us. After a slow start we have gradually built up our membership and as at this moment we have 643 members. Not all are active and seem to prefer to pop in from time to time and just read the information and posts, while others play an active role posting most days even if its just a cheery good morning to the group. In some ways the morning posts are like the infamous Waltons goodnight John Boy scenes, but in reverse with many cheerful good mornings.

I have the greatest of respect for all of our members whether they have Parkinsons, or they are the main carer of family member. Parkinsons is a degenerative, progressive neurological disease with at this time no cure and being diagnosed is a life changing experience for the person diagnosed and their family.  One thing I have learnt is that the two most effective things those of us with Parkinsons Disease (P.D) can do is to maintain a positive attitude and to exercise as much as possible. Of course the progressive nature of P.D can limit the extent of exercise a person can do but if we exercise within our limits it can only help. I still enjoy walking and having 2 Jack Russell's Perdy and Max means I go out walking most days in the woods or on the beach. Living in Cornwall means we are spoilt for different places to go and it is something I will continue for as long as I am physically able too.

Regular readers will know the year after I was diagnosed with P,D I received the shock diagnosis of pancreatic cancer, one of the more aggressive cancers. I had the life saving surgery exactly 2 years ago followed by 6 months of chemotherapy and despite the low statistical survival rate of this cancer, at this time I am well and due to have my next blood tests in the new year. I have no doubt that further down the road I will face a reoccurrence, but until then I face life head on and will stay independent as long as possible. My son said to me after my chemo that he doesn't know if I am brave or just plain stubborn, well I think the stubbornness streak wins!!

As to where I am now with the P.D, firstly I am taking part in two trials, the newest one being the PDSTAT trial which is looking to see if statins can have an effect in slowing symptoms. I do not know if I am taking the statin drug or a dummy (placebo)  drug as it is what is known as a double blind trial, but if my taking part can help someone else in the future, to me its a privilege to take part.

I can say without doubt that Parkinsons is having a daily negative affect on my life, it ranges from general apathy and no desire to do anything whatsoever, but of course I must, to inexplicable pain all over the body, loss of balance, memory loss, and general clumsiness to name but a few. A good day is followed by a not so good day....... I`m sure you get the picture.  One thing that does sadden me is getting nervous in busy shops almost a panic, I took Gemma to a local RSPCA Xmas fayre last Sunday and I had to leave,  everything was closing in on me it was not pleasant at all. Also if I have to go somewhere unfamiliar by car it is a daunting experience, now I love driving, but going on a journey away from my locality now makes me slightly nervous. I know its just a gradual progression of my Parkinsons but I don`t like it, but I will fight it as long as I am able to drive. I am on a 3 year driving licence due to Parkinsons which has just been renewed but I know the time will come when the medics will deem me as unfit to drive thus losing my independence and that is not something I look forward too.

However, Christmas is just around the corner again and very soon I will have to brave going into the loft to get the boxes of decorations down, I will wait until I am having a good day before I brave that!! I don`t know yet if its just Gemma and I Christmas day or if James is coming down, whatever happens we have the magic of skype to fall back on. James is getting married next June so he and Christy are busy making plans, I hope health wise I will be able to take part on his big day and join in the celebrations, I am sure they will have a long and happy life together.

Well that`s my little catch up for now, I will start posting regular updates again life just seems to have got in the way this year!! May I wish you a joyous Christmas and a happy and healthy 2017. We have a saying in the Parkinsons community, I may have Parkinsons but Parkinsons does not have me! long may that continue.

Tony 30/11/2016