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
Saturday 31 December 2016
Tuesday 13 December 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
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
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