Everything being equal I reckon I can make it perfectly well to 80, that would be very respectable. So I am setting that as my goal! I am going to do everything on my bucket list , I am going to learn to ski, we are going to Bora Bora for our 25th wedding anniversary, I will go to Glastonbury with my son, I will make it to his wedding and I will meet my grandchildren!
Well everything else being equal we should get a cure for PD in my lifetime. Realistically that’s how I will get to 80! I doubt the advancements will come quick enough for me to have disease remission or reversal but hopefully significantly better treatment which will always control the symptoms and therefore I will not die from Parkinson’s either as a consequence of falling or choking, or any other Parkinson’s triggered event leading to my end.
Some strange things about my symptoms, I wonder if anyone else relates to these things?
- When I yawn it triggers a quite uncontrollable tremor in my right hand.
- My right hand often feels way colder than the left.
- I now have to carry my work bag across shoulder
- I find it hard to type, my easiest way is to regress to one finger typing in my right hand
- My short term memory is a bit random
- I feel a tensioning in my throat
- Cutting an onion is now a cack handed affair when once I did a fair brunoise
What are all the odd things when I look back?
- Being high in mood one minute and feeling miserable the next (I have always been a bit moody though!)
- Tremors when lifting a full cup of hot coffee, especially whilst engaging in a meeting.
- Always had a funny walk! (according to my wife)
- Snorer from young age
Is there any link to the rest of my medical history?
Well I had Chron’s disease in my teens & twenties. I say “I had” , I had an Ileostomy when I was 26 which “touch wood” has ‘cured’ me of that nasty condition. This brings up an interesting link to Parkinson’s. There is a lot of research which is pointing to a link between the gut and its make up of micro biomes and Parkinson’s. This links autoimmune problems , which cause changes in the gut (in my case leading to Chron’s Disease) and also possibly being a factor in developing Parkinson’s. Further than this I have also had Gout and Uveitis and have TMJ; so clearly have auto immune issues. So I wonder if my Parkinson’s is strongly linked to an auto immune response. Lastly, just to complete the list I have had hypertension since my late twenties.
Apart from all of that and Parkinson’s, I am a really healthy guy 🙂
A New Normal: a journey with young onset Parkinson’s 