Like a lot of medicines, research is moving at a fast pace with more and more claims that a cure for Parkinsons is getting closer each day. For thousands before us it will of course be too late, and possibly in our lifetime also but all the trials and research we take part in, are little steps towards that monumental day when we can shout from the rooftops, there is a cure for Parkinsons! I am taking part in a trial looking at the effects of my medication and how the disease affects me neurologically.
I am pleased to play a small part in one of many Facebook self support groups for patients with Parkinsons and our carers. https://www.facebook.com/groups/490857204425819/?fref=ts Please pop in and take a look, we are a small but growing very supportive group, where we discuss some serious issues affecting us but we also have a laugh about things also when its appropiate.
I can without doubt see a marked deteriation in my Parkinsons since my last blog, my resting tremor in particular is getting worse and if I am over tired or under some stress my legs shakes badly too. I have rcently also started choking on certain foods and my Parkinsons nurse referred me to adult speech therapy as part of their remit deals with such issues. Basically my swallowing reflex is not working as efficiantly as it once did so certain food groups in particular spongy food like cake, some fruit, biscuits, meusli etc tends to stop part way down causing a nasty choking sensation which believe me is not nice to experience. I see her again next week and since the last visit I have been completing a choking diary to help build up a pattern. I think the worst scenario is a soft food/liquid diet. Some precautions I will need to start is cutting my food up into smaller pieces to try and avoid the problem. Also I have had a couple of tumbles, it would almost be comical if I didn`t know better, as I fell over the damn coffee table, luckily no damage to the table or me apart from a sore knee and hurt pride!!
As to the dreaded pancreatic (bile duct) cancer, my chemo has finished and having had 3 scans since it finished my oncologist expressed some concern over some slight changes shown up in the scans, but this could be soft tissue changes post surgery. My most recent blood test showed a slightly raised mark for cancer but not enough to warrant further treatment at this stage. I need to have another full blood check next month and if that raises any concern the oncologist will see me about it. If not I see him in April for bloods and scan. On a day to day basis I still feel discomfort inside around my liver area, and walking can tire me out on some days also.
Of course me being greedy, I don`t settle for one major illness, oh no Tony has to go the full hog and get a rare vigerous cancer as well as Parkinsons. The complication with this is that the symptoms overlap each other and it can be difficult to tell if the symptom I feel is related to one or the other or both! One classic example is mood swings/low moods/lethargy. These of course are classic Parkinsons as this disease affects the brain, but having stage 3 cancer also contributes towards these problems also, why has life got to be so complicated lol!
Poor sleep continues to be an issue and this can obviously hinder the lethargy which seems to be increasing it seems a never ending circle and makes me seem to be a complete whinger but I am sensible enough to realise it has to be dealt with so off to the surgery next week to chat to my gp.
I have `met` and continue to meet some inspirational and wonderful folk worldwide in the cancer/parkinsons forums I belong too, I consider them friends although I will probably never meet them in person, but we continue to share fun times and sad times, welcoming new members to the groups and hearing of sad news in the cancer groups when someone gains their wings and leaves this life. I must shout out a particular Hi to Matt in America, we have both gone through the same cancer and whipple surgery He will know who he is and we hope to meet and shake hands if he can make it back to this country in the future. Matt doesn`t say a lot, but when he writes in the forums he writes deeply and with great belief and emotion and spiritual belief which supports many of us in our journey. Thanks Matt. your words do help and one day hopefully in 2016 we can say hi in person.
Well I seem to have rabbited on and on, sorry if this has been a moaning blog, it wasn`t meant to be, maybe if it is, it shows where I am at this moment in time and no doubt many will recognise this themselves.
I will sign off now, its time to get Gemma sorted and do her hot milk and honey! her life revolves around her routine so even if I feel like crap the need to care for Gemsie pushes me through so in a strange way she does help to keep me focussed on life!
Take great care my friends and look after each other,
Tony
borninkernow@outlook.com
