Hi everyone, firstly a very merry Christmas to one and all I truly hope it will be a happy time for you and your families and friends.
I am lucky enough to have my son here for a few days so the family seems complete and fulfilled.
Well, what a year 2013 has been for me personally, truly life changing to have it confirmed that you have Parkinsons Disease. Emotionally it certainly has been a roller coaster ride of emotions and some dark thoughts, not just for me but my close family also. However, I said in my very first blog that it will not beat me and emotionally wear me down. On the whole I think I have been able to stick to that promise, the complicating factor being that I am a full time carer to my daughter who has a learning disability and increasing mobility problems, so of course it is constantly in my mind that the day I have to admit that I can no longer be able to cope with this responsibility may well be closer than I care to admit. So 2014 will be the year that I make the effort to fully explore exactly what there is available to meet her current and future needs, as hard as that may be!
Some of you will be aware we recently moved into a bungalow much better suited to her needs and of course without the dreaded stairs which were making her life difficult in the old place. This emotionally and physically was very hard for me and took its toll on my body! But on moving day, a very dear close friend was there to help and my son came back for the weekend to lend his support too. So we did it in a day and I was left with the chaos and a seemingly endless pile of boxes and black bags to sort out and try to put away in a smaller property... not an easy task! I think my body let me know in no uncertain terms that I had overdone it sol I have to be a good patient and listen to my body more.
This leads perfectly into an excellent course I took part in during 2013 that being the Expert Patient Programe.
The course is designed to compliment the care you receive from health
care professionals and gives you the confidence and insight to be an
equal partner in your care. From experience it's easy to be overwhelmed
and swamped by information from consultants and GP's at a time when
emotionally we are probably at a very low point. The course will give
you the confidence to ask the questions you need answers too which in
turn can reduce anxiety and stress leaving you feeling more in control
of your condition. From the experiences of past participants, the course
gives you confidence, understanding, coping strategies and self
management techniques all of which have shown that this leads to fewer
GP visits and patients who have a greater realisation about the impact
of their condition on themselves and their family.
Another advantage from this course is that the members all keep in touch via a closed Facebook group and we support each other which is a fantastic asset to have on those dark days when maybe you just need a few words of encouragement from someone who truly understands.
Well I have no doubt that 2014 will bring it's own challenges and hurdles, but for now I/m not worrying about that, I intend to enjoy Christmas with my family, so again a Happy Christmas to you my dear friends and we will face 2014 head on together.
Do please get in touch if you wish to discuss anything with me, I am on Facebook under Tony Kernow and on Twitter as Kernowriter, I would love to hear from you.
Take good care of each other and stay safe.
Tony
Follow my journey as a man newly diagnosed with Parkinson's, who is also a full time carer to a family member in Cornwall UK.
Wednesday, 25 December 2013
Wednesday, 4 December 2013
Like a bad penny I have returned!!
Hi everyone, hope my fellow 'parkies' are as well as you can be and staying positive, though that can be difficult at times, as anyone living with a long term health condition can testify.
As you will know I and my daughter for whom I am the principle carer have just downsized to a bungalow albeit in the same village, as she was really struggling with the stairs in our previous home, and believe it or not there is an 18 month wait from assessment to having a stair-lift fitted. I knew that was far too long for her to struggle and risk an accident, so when this 2 bed bungalow became available I applied, not really hopeful that we would get it, but we did!
That started a couple of months of arranging the move and downsizing from a 3 bed house to a 2 bed bungalow, and all the packing etc etc. I could not believe we had so much in that house, I gave lots away on freecycle, took car loads to the tip, but the dining room was still stacked with boxes full of possessions from the loft through to the shed! I wish I was more minimalistic but I don`t think that will ever happen, I like my memories and my personal things around me, they all have their distinct memories and maybe it,s due to this Parkinson's that it's even more important now. Combine this with 30 plus tubs etc from the garden and you will have some inkling of the scale of the operation!
As to the Parkinson's, I think I have been running on adrenaline during the move, and as my GP increased my Ropinerole to 12mg which seems to be the right dose as it has largely stopped the tremor in my left arm at lest until the evenings and prior to my morning meds. However, the aches from my body didn`t ease and my left arm has become noticeably weaker particularly my grip, and I'm starting to compensate for this automatically. I will wait to see if this eases now that the bulk of the heavy work is done. I have noticed this past week that my shoulder on the left side is getting sore and stiff particularly at the end of the day, I'll mention this to my consultant when I see him in the New Year, but I'm guessing it's a natural progression of this disease.
Talking of my consultant, I need some help from my fellow Parkies. Deep Brain Stimulation (DBS) is getting a lot of press ( http://www.parkinsons.org.uk/content/deep-brain-stimulation )
that is a useful link if you are new to DBS.
Have any of you looked into this seriously? if so can you kindly contact me tjkernow@hotmail.co.uk
and let me know what you found out and if you are considering it. I know there are a lot of assessments and psychological tests to take to check suitability, and the biggest hurdle of all appears to be granting the funding from our health authority. Opinion appears to be to have it sooner rather than later to get best advantage from the DBS and it also seems the months following can be pretty crap while the brain settles down again. So you can see it is not to be taken lightly but the advantages can be a lowering o drug dependence and slowing down the parkie tremor thus a greater quality of life. If in time I am accepted, and funding is found, it looks at the moment that Bristol is where I would need to go for surgery, bu in time maybe Derriford in Plymouth may do it, as they do a lot of research programmes there.
Well enough for now, do please contact me to share anything Parkinsons, take good care of yourself and each other.
Tony.
As you will know I and my daughter for whom I am the principle carer have just downsized to a bungalow albeit in the same village, as she was really struggling with the stairs in our previous home, and believe it or not there is an 18 month wait from assessment to having a stair-lift fitted. I knew that was far too long for her to struggle and risk an accident, so when this 2 bed bungalow became available I applied, not really hopeful that we would get it, but we did!
That started a couple of months of arranging the move and downsizing from a 3 bed house to a 2 bed bungalow, and all the packing etc etc. I could not believe we had so much in that house, I gave lots away on freecycle, took car loads to the tip, but the dining room was still stacked with boxes full of possessions from the loft through to the shed! I wish I was more minimalistic but I don`t think that will ever happen, I like my memories and my personal things around me, they all have their distinct memories and maybe it,s due to this Parkinson's that it's even more important now. Combine this with 30 plus tubs etc from the garden and you will have some inkling of the scale of the operation!
As to the Parkinson's, I think I have been running on adrenaline during the move, and as my GP increased my Ropinerole to 12mg which seems to be the right dose as it has largely stopped the tremor in my left arm at lest until the evenings and prior to my morning meds. However, the aches from my body didn`t ease and my left arm has become noticeably weaker particularly my grip, and I'm starting to compensate for this automatically. I will wait to see if this eases now that the bulk of the heavy work is done. I have noticed this past week that my shoulder on the left side is getting sore and stiff particularly at the end of the day, I'll mention this to my consultant when I see him in the New Year, but I'm guessing it's a natural progression of this disease.
Talking of my consultant, I need some help from my fellow Parkies. Deep Brain Stimulation (DBS) is getting a lot of press ( http://www.parkinsons.org.uk/content/deep-brain-stimulation )
that is a useful link if you are new to DBS.
Have any of you looked into this seriously? if so can you kindly contact me tjkernow@hotmail.co.uk
and let me know what you found out and if you are considering it. I know there are a lot of assessments and psychological tests to take to check suitability, and the biggest hurdle of all appears to be granting the funding from our health authority. Opinion appears to be to have it sooner rather than later to get best advantage from the DBS and it also seems the months following can be pretty crap while the brain settles down again. So you can see it is not to be taken lightly but the advantages can be a lowering o drug dependence and slowing down the parkie tremor thus a greater quality of life. If in time I am accepted, and funding is found, it looks at the moment that Bristol is where I would need to go for surgery, bu in time maybe Derriford in Plymouth may do it, as they do a lot of research programmes there.
Well enough for now, do please contact me to share anything Parkinsons, take good care of yourself and each other.
Tony.
Tuesday, 29 October 2013
A short Parkinsons Update
Hi guys hope you are all well.
After suffering immense pain in my left arm for the past week, and convincing myself it was a further deterioration in my health due to Parkinson;s, I saw my GP today.
To my relief he diagnosed Tendonitis and the way he explained it fits exactly with the symptoms I am having. Once I had explained to him that I was in the middle of moving home he explained what had happened, in short I have been overdoing it and strained my tendons with all the lifting I have been doing. He wasn`t too impressed when I told him I still had to transfer all the boxes etc to the new house and unpack everything lol.
Anyway he gave me some ibuprofen gel to use, I'm not convinced if it will work or not but one can only try!
We also agreed to increase the Ropinerole dose up too 12mg slow release per day as there had been no improvement going from 8mg to 10mg. He wants to do review after we move and have settled down as he thinks the hassle of the move is aggravating my symptoms including the lack of sleep completely on at least one night a week!
I said from the start that I wasn`t going to give in and let Parkinson's take my life over, but even I have to admit I'm finding it hard and it's taking it's toll. Once the move is done, I think I must be sensible and listen to my body a bit more. After all the decorating can be done in my time and at my pace......... now I have to convince myself of this and not go at it like a bull at a gate!
I will let you know how the move goes.. once I get a definite date and I can arrange to get carpets laid etc and book the van etc etc etc lol. I must follow the Expert Patient Programme advice and pace myself!!
Take care of each other folks.
Tony
After suffering immense pain in my left arm for the past week, and convincing myself it was a further deterioration in my health due to Parkinson;s, I saw my GP today.
To my relief he diagnosed Tendonitis and the way he explained it fits exactly with the symptoms I am having. Once I had explained to him that I was in the middle of moving home he explained what had happened, in short I have been overdoing it and strained my tendons with all the lifting I have been doing. He wasn`t too impressed when I told him I still had to transfer all the boxes etc to the new house and unpack everything lol.
Anyway he gave me some ibuprofen gel to use, I'm not convinced if it will work or not but one can only try!
We also agreed to increase the Ropinerole dose up too 12mg slow release per day as there had been no improvement going from 8mg to 10mg. He wants to do review after we move and have settled down as he thinks the hassle of the move is aggravating my symptoms including the lack of sleep completely on at least one night a week!
I said from the start that I wasn`t going to give in and let Parkinson's take my life over, but even I have to admit I'm finding it hard and it's taking it's toll. Once the move is done, I think I must be sensible and listen to my body a bit more. After all the decorating can be done in my time and at my pace......... now I have to convince myself of this and not go at it like a bull at a gate!
I will let you know how the move goes.. once I get a definite date and I can arrange to get carpets laid etc and book the van etc etc etc lol. I must follow the Expert Patient Programme advice and pace myself!!
Take care of each other folks.
Tony
Sunday, 27 October 2013
Why is sleep eluding me!
Well it`s the small wee hours and for the second night I just cannot settle and sleep. This damn Parkinson's has a lot too answer for!
It may just be linked to the muscle spasms and soreness I am getting in my left arm too, the pain can be excruciating as if the muscles are going into spasm or cramp, then it gradually releases. Again it may just be the result of our move and all the lifting of boxes from here to there trying to make sure they are not a trip hazard for Gemma to catch her foot and go flying over.
Talking of the move, we still have no def date, but the bungalow is now emptied of the previous owners furniture,and it just seems we are waiting on Ocean Housing to get in there and do their checks etc. It's a right pain as my son is traveling down from Portsmouth to help me with the moving day so he needs to know when to book time off at short notice. It's time for me to start phoning and finding out what the delay is!! If any of you like messing with Google earth type in PL26 7PF and the bungalow is number 32. Just out of curiosity, if you are outside the UK and you manage to do this, let me know.
Well later today we are meant to be hit by a huge storm (by UK standards) with winds speeds of 80mph plus and torrential rain.Of course as it has been a mild Autumn, many trees still have their leaves and with the wet ground no doubt a few of our lovely trees here in Cornwall and country wide will succumb to the gales and be blown over. There is something sad about seeing a huge oak tree or similar lying across a country road after being there for such a long time, they are part of our heritage
and the joy of living in a lovely county like Cornwall, but how often do we actually take notice of them and admire them? I love seeing them devoid of leaves on a cold frosty winter morning, very skeletal and beautiful against a winter sky.
I hope the damage to the countryside, buildings etc is minimal but I guess we can never prepare 100% for these once in a decade storms, I'll do a check in the garden tomorrow just to mke sure ll is secure.
Well I had better try and get a couple of hours sleep at least or I will be laid out on the sofa later this Sunday sleeping, no doubt with 2 Jack Russel's keeping me company!
Take care of each other, nd to all my PWP friends, look after yourselves also!
Tony in Cornwall.
It may just be linked to the muscle spasms and soreness I am getting in my left arm too, the pain can be excruciating as if the muscles are going into spasm or cramp, then it gradually releases. Again it may just be the result of our move and all the lifting of boxes from here to there trying to make sure they are not a trip hazard for Gemma to catch her foot and go flying over.
Talking of the move, we still have no def date, but the bungalow is now emptied of the previous owners furniture,and it just seems we are waiting on Ocean Housing to get in there and do their checks etc. It's a right pain as my son is traveling down from Portsmouth to help me with the moving day so he needs to know when to book time off at short notice. It's time for me to start phoning and finding out what the delay is!! If any of you like messing with Google earth type in PL26 7PF and the bungalow is number 32. Just out of curiosity, if you are outside the UK and you manage to do this, let me know.
Well later today we are meant to be hit by a huge storm (by UK standards) with winds speeds of 80mph plus and torrential rain.Of course as it has been a mild Autumn, many trees still have their leaves and with the wet ground no doubt a few of our lovely trees here in Cornwall and country wide will succumb to the gales and be blown over. There is something sad about seeing a huge oak tree or similar lying across a country road after being there for such a long time, they are part of our heritage
and the joy of living in a lovely county like Cornwall, but how often do we actually take notice of them and admire them? I love seeing them devoid of leaves on a cold frosty winter morning, very skeletal and beautiful against a winter sky.
I hope the damage to the countryside, buildings etc is minimal but I guess we can never prepare 100% for these once in a decade storms, I'll do a check in the garden tomorrow just to mke sure ll is secure.
Well I had better try and get a couple of hours sleep at least or I will be laid out on the sofa later this Sunday sleeping, no doubt with 2 Jack Russel's keeping me company!
Take care of each other, nd to all my PWP friends, look after yourselves also!
Tony in Cornwall.
Saturday, 19 October 2013
Back on line......for now!
Well following the demise of my last laptop helped by the overbearing energies of young Max the Jack Russell, I have today invested in a reconditioned model. Trouble is it means me getting out of my comfort zone with Windows 7 and having to learn the much different Windows 8!
However after a few hours I'm getting used to it, but have no idea what half of it does, but at least I have mastered enough to do the basics for now. however, I have no doubt that there will be a transitional period after we move while I am waiting for BT to get the bungalow connected!! I will be depending on my mobile to get emails, but I may need to invest in a dongle!
I am getting a lot of pain in my left arm which is the side afflicted by Parkinson's and those P.W.P will understand what I mean by sore tight muscles which make it painful at times to even lift the arm up, thus affecting the use of a fork which i do not like at all. Once this house move is out the way I'll make an appointment to see the GP, and I am due an appointment to see the consultant at some stage.
I am hoping a lot of it is the rigors of packing and lifting heavy boxes which is aggravating it and that when the move is over it will settle. However the fact that it is at it's most painful when I wake up in the morning may blow this theory of mine out of the water!!
Getting in and out of the loft is difficult enough when one is reasonably fit, it's a lot more difficult, painful and downright frustrating when your body doesn't want to do what the brain wishes, and is painful despite the tramadol etc I take.
The Parkinson nurse specialist has increased my Ropinerole to 10mg this last week, as the trembling had returned in my left arm, again though I guess it is not helped by the move to the bungalow. We confirmed the carpet today after going back for a second look. I have to have something that doesn`t highlight the fact that my white dogs are always losing some hair, and I vacuum at least twice a day!
I have about 30 various size pots lined up ready to take to the bungalow when I eventually get the keys, I'm certainly not leaving all my good plants behind! The garden up there is tad neglected, but it;s a blank canvas and all things being equal I can turn it into a nice colorful paradise in time.
Well time to sign off folks, thanks for following this blog, I aim to make it variable and not too depressing regarding my Parkinson's, so it may reflect the way I'm feeling, but it will be honest!
Please share it with anyone that you think may be interested, look after each other and yourselves.
Tony.
However after a few hours I'm getting used to it, but have no idea what half of it does, but at least I have mastered enough to do the basics for now. however, I have no doubt that there will be a transitional period after we move while I am waiting for BT to get the bungalow connected!! I will be depending on my mobile to get emails, but I may need to invest in a dongle!
I am getting a lot of pain in my left arm which is the side afflicted by Parkinson's and those P.W.P will understand what I mean by sore tight muscles which make it painful at times to even lift the arm up, thus affecting the use of a fork which i do not like at all. Once this house move is out the way I'll make an appointment to see the GP, and I am due an appointment to see the consultant at some stage.
I am hoping a lot of it is the rigors of packing and lifting heavy boxes which is aggravating it and that when the move is over it will settle. However the fact that it is at it's most painful when I wake up in the morning may blow this theory of mine out of the water!!
Getting in and out of the loft is difficult enough when one is reasonably fit, it's a lot more difficult, painful and downright frustrating when your body doesn't want to do what the brain wishes, and is painful despite the tramadol etc I take.
The Parkinson nurse specialist has increased my Ropinerole to 10mg this last week, as the trembling had returned in my left arm, again though I guess it is not helped by the move to the bungalow. We confirmed the carpet today after going back for a second look. I have to have something that doesn`t highlight the fact that my white dogs are always losing some hair, and I vacuum at least twice a day!
I have about 30 various size pots lined up ready to take to the bungalow when I eventually get the keys, I'm certainly not leaving all my good plants behind! The garden up there is tad neglected, but it;s a blank canvas and all things being equal I can turn it into a nice colorful paradise in time.
Well time to sign off folks, thanks for following this blog, I aim to make it variable and not too depressing regarding my Parkinson's, so it may reflect the way I'm feeling, but it will be honest!
Please share it with anyone that you think may be interested, look after each other and yourselves.
Tony.
Wednesday, 16 October 2013
Quick update
Hi everyone this is quick update via my mobile as my laptop has curled up it's toes and gone to meet it's maker in laptop heaven! It was helped on it's way by Max the young Jack Russell who loves to race into the lounge and take a huge dive for the nearest spare seat. On this occasion he misjudged his landing and veered left, landing ungainly on the coffee table while launching the laptop to the ground with a sickening crash! To add insult to injury he even had to land on the laptop like some ungainly ballet dancer!
The poor laptop struggled on for a couple of days getting slower and hotter finally succumbing to the inevitable with a final emission of smoke! So that ended the week where my Levoda was increased again to 10mg whch tbh doesn't seem to be making any difference.
Mind you I am in the middle of a move. We are getting a bungalow primarily for young Gemma as she is struggling so much on the stairs now. It hurts to see her struggle so much.
Well that concludes this update via my mobile! I will invest in a second hand lappie once the move is over.
Stay safe one and all and look after each other
Tony. tjkernow@hotmail.Co.uk
Saturday, 28 September 2013
Subscribe to:
Posts (Atom)