Headline
What a difference a year makes…… or does it? This first anniversary of My Life After Parkinson’s finds me still here (hurray!) but alas, my situation is mostly unchanged (boo!).
Bullet points
What is still keeping me mostly housebound?
A combination of Neuro and Gastro issues with added skeletal damage and decay.
What am I doing to change the current status?
Everything I can think of to manage symptoms day to day and to work with my doctors to try and find long-term strategies that will work!
What are my goals?
To find a way to overcome gastro and neuro issues so that I can once again try socialising in reality – even for just a few hours – without requiring days of on-bed recovery thereafter. Longer term? to figure how to get away from home for more than a few hours, of course!
Can it be done?
I’ll be giving it my best shot, as always.
Narrative
I am very thankful that I appear to have inherited my late mother’s innate resilience in the face of adversity and, even more importantly, her sense of humour when all appears to be heading to worminess.
I also feel blessed that I not only have access to social media and the internet, but that there are folks I know there, as well as in reality, who choose to stay in touch with me and let me share in their adventures. No longer being eligible for the support of Parkinson’s charities did leave me feeling quite alone, so without social media, I have no doubt that my mental health and overall well-being over this past year would have been seriously in jeopardy.
Twelve months ago I was writing the joyful news that my neuro diagnosis was no longer one of Parkinson’s Disease. I remain more than joyful, of course, with that diagnosis-reversal, but part of me is feeling somewhat thwarted that NewNeuro’s predictions with respect to neuro issues are coming true. He did warn me not to expect improvements and so it is that most neuro “stuff” is unchanged, a few new issues cropped up during and following the parkinsons-drug withdrawal in the summer and autumn of 2015, and some symptoms have deteriorated.
Only in 2015 did I learn that that parkinson’s drugs are only for the motor symptoms of Parkinson’s Disease. Since the 2006 diagnosis I had been wrongly attributing my entire battery of motor/non-motor symptoms to “parkinsonism” and expecting the medication to improve things. When I was diligently reporting all symptoms I considered neuro ones to OldNeuro each visit, I suppose I expected to be told precisely which were/were not associated with the diagnosis.
It is clear that I expect(ed) too much!
NewNeuro seemed quite shocked at this state of affairs – for all my knowledge about parkinsonism and the actual management of my neuro situation, I just hadn’t grasped two fundamentals (1) if Parkinson’s drugs don’t improve mobility they should be withdrawn (they aren’t toxic but they have many adverse side effects), (2) if, within 10yrs of symptoms showing and a diagnosis being reached, there is no significant (wheel-chair needing) disability developing then the diagnosis is unlikely to be Parkinson’s Disease.
I hadn’t known this.
I suppose because my life was so taken up with just getting through each day with so much happening, so many aspects of me appearing to go through some kind of system failure – from vision to hearing to digestion to movement to tremor etc., I just wasn’t capable or equipped to step outside the situation and (re)appraise it. The seemingly endless personal admin involved with disability and finances, and even just trying to cope day to day (not washing and not having clean clothes is not an option, oddly enough!) was, and remains, very tiring – mentally and physically! To cap it all, I used to sleep in 2hr stints as my body was so stiff it didn’t turn over while I slept overnight, so would wake me to turn over … sleep deprivation is a form of torture so… bad bad me for not cottoning on that there was a bunch more going on than neuro-dysfunction/parkinsonism.
To be fair, though, when I met with others living with a Parkinson’s Disease diagnosis, we all had the same issues and went about things the same way, even recognising what we were doing and why, so maybe I shouldn’t be so hard on myself and expect me to have figured out that the diagnosis was in error. Deep down, of course, I had always been praying that I didn’t have Parkinson’s Disease and referring to it as “my form of parkinsonism” and, maybe if I’d never accepted the specialist’s recommendation to start medication early, I might now be in a very different situation altogether. No point in “what-iff-ing”, though – it is what it is.
These days I am happy to say that I am sleeping a lot better (at least 4hr stints) and my mind is continuing to clear and sharpen up since my last dose of Stalevo on 25 October 2015. The Neuros said that the drugs would have been eliminated within a few weeks of this date but it seems to me that my clarity of thought took a lot longer (maybe due to my predisposition to only slowly metabolise drugs). Who knows.
How I am now is what has to be managed! I continue optimistic that against all odds I shall find a way to reverse neuro-plastic changes resulting from nearly a decade of unnecessary parkinson’s medication – at this point, we have no clue how I would have been without them (something pretty wrong clearly did happen to my brain function during the March 2006 anaesthesia), and we have no way of knowing how I will progress!
Identifying “Not Parkinson’s”
Having been warned by NewNeuro at the November 2015 appointment that my neuro situation might well be unchanged or worse after the parkinson’s drugs withdrawal, I have spent the intervening months since then trying to rule out alternative causes for my “not parkinson’s” motor and non-motor symptoms (chiefly in the hope of finding a “fix” for them!). It turns out that multi-joint arthritis and sacral nerve damage from previous back injuries may well be causing the bulk of my walking and joint problems, compounded, of course, by neuro dysfunction (proprioceptive issues etc). This is where my continuing gentle rebounding, theraband stretches, light weights, balance ball sitting and occasional MagnEtrainer pedalling comes in to play. Tinnitus, auditory processing disorder and mild hearing loss are not due to neuroma and, together with other non-motor symptoms without an organic explanation are evidence of brain dysfunction/neuro-plastic changes.
A Life After Parkinson’s does not mean a life with no neuro- /parkinson-like symptoms!
At the November appointment NewNeuro said he would refer me to a different physio/multi-disciplinary team at another London hospital that specialises in neuro dysfunction. The referral went through and I recently got a date for my first appointment at the end of June. I will see New Neuro after that and see where we go from there.
Gastro Status
Gastro problems are more wide-ranging than previously thought – yet again recent test results have supported my reported symptoms but there is no quick fix. My Gastro Dude is, however, once again writing to the Prof at Bart’s (who ran the original battery of lab tests in 2013) to see if research and academia has anything else that might help me. If it doesn’t, then how my life has been for the past three years since the pseudoobstructions first rocked on up is, as Gastro Dude has said, likely to be the best it can ever be. Apparently, so long as (1) I have gastro output (or should it be throughput?!!) as a result of drugs and dietary therapies, (2) problems (organic and functional) have been identified and are being managed and monitored and (3) nothing sinister appears to be emerging, then Gastroenterology has achieved its purpose! GastroDude told me that he has already put at my disposal the best chemical “weapons” to be used as/when I require them and, luckily for me, my GP is able to prescribe them (SEGUE: with our newly restructured/semi-privatised #NHS following the 2012 Health and Social Care Act, CCGs across the country lay down different commercially-based rules for what GPs can and can’t do and prescribe – it is no longer about the best care/treatment for the individual)
Conclusion
As those of you who keep in contact with me via Facebook and Twitter already know, on this first anniversary of my Life After Parkinson’s, I remain very involved with the day-to-day running of @Sailonline, following the exploits of @SolarImpulse and keeping tabs on the worlds of the Shiba Inu and Tiger! I knit and crochet for charity (see my Knitting webpage)and occasionally inflict homemade items on chums. Thanks to the TV and internet I keep up to date with all the mainstream cooking competitions (Masterchef, Bakeoff), follow avidly “my” crime dramas, keep tabs on environmental issues and what is happening with the UK’s #NHS. My Kindle remains my constant companion for all those occasions when reading becomes a possibility! I also maintain myself and my wee hovel (one day I vow it will be civilised again!) albeit it only a little every day. I am doing OK.
I shall conclude by asking you all to bear with me if I indulge occasionally in grumpiness .. normal service will always be resumed!
Happy 1st Anniversary of My Life After Parkinson’s!!
If you haven’t yet visited my website, please do so.
@joannekarma
#RCtheParrot
Hang in there sister! Aahmmmm!! Can you feel it..positive energy and a dollop of love from RSA?
It is my sincere wish that you turn a corner and improve over the days to come.
George Snoek
Hi Joanne
I have Parkinson ( or so I’m told) hence trawrling the net st this ungodly hour after taking 3types of sedation that’s not worked. As usual I’ll go to sleep at 6am. I was horrified at your story and amazed at your attitude to it. Do you have anything wrong now except the damage thst Sinemet has done. I have been taken it for 5 years and the side effects get worse , more painful and resistristive. And I would be furious you have taken it well as it is the best was to be to heal now to stress and worry and bring on other things. How did it feel coming of Sinemet. I have tries several times when tthe dystonia sideffects I get are to hard to handle. I,don’t thick imshould be on Sinemet at all have asthey haven serious adverse effects on my mental stafe . They give difficulty breathing (dystonia in chest) and I can’t talk when taking the for other than the first one of the day and as the dsy goes on the voices gets to the point I can’t talk at all . My throat and neck are very sore as I have dystonia in my neck and throat giving me swallowing difficulties. The pain from dystonia is also in stomach I feel restivred of breath and sometimes I feel it verrydifficultwhen. All thes are Going together with my leg kicking of and my head feels it’s in a tumble drier. I am very concerned about anylong term thst the Sinemet and sleeping pills and larazanpam are having on my long germ health. Well inrealise I have aneuro problem I don’t think it’s Parkinson’s
How difficult was it and I long did it take to be weened of Sinemet and anything else you were taking and have you been effected longterm ,I think it is seriously unhinged me sometimes I haven’t a clue what I am doing. I have no smell which started after taking meds as did thr clenting of teath which is so painful that it effect my head jaw and neck causing so much 24/7 stress. I know it Eileen, be difficult to stop drugs. But I also need to go coldturkey as if a reducecslowly any less than I’m taking then I get all thevside effects and none of the benefits. I went to dsys,last month free of them and coukd walk ok the first day and judtvhad to cope awful facial dystonia inmy eyes mousy and eyes .i couldn’t see ar eat much and when it got into stomach and chest it was hard to breathe, but intook larazapam which help everthing unyill the worse was over which was teatime of the same day. I didn’t sleep at as l am reliend to put me to sleep and I even took. Larazapam and sleeping pill. So I was very slow due to lacknof sleep but by the end of the second day I was slower and my voice did t have the energy to say much and my head was like Ina tumble drier. But I think these things would get better as days gone on. As I have a weird problem in that I don’t suffer rigitiyy though I stop working but I’m very bendable
Any how I would really appreciate how it has been for you have you forgotten how to use anything. Inhave prolem s with bad ingestion which I think is a cross between my antidepressant and my tight chest. I’m hoping that will clear naturally. I have digestive problems and have messed up weeing and can only gonwhen off and bowel movementvcan onlyndo when on. I dontbknow how much of a problem your head was
Please tell me how you came off the meds and whist long term effects thru are having.
I would reallly appreciate a reply
Regards
Jxx
Hi Janet
I am sorry to hear that you are having such difficulty with your neuro condition. I know just how it feels to be awake in the wee hours with a body that has decided to hijack you!
The questions you are asking are, I think, all issues that need to be asked of your Parkinson’s Nurse or your neurologist. Brain diseases and dysfunctions are supremely complex so it follows that any drugs used in treating them are also complex, so my advice to you is absolutely not to tinker with your Parkinson’s medication without specialist advice, and definitely don’t think about going cold-turkey. You mention medication for depression and sleeping/sedation – as drugs can interact with each other and change how they work, so have you thought of speaking with your pharmacist and have them double-check interactions?
When is your next neuro appointment? If it is some months away, maybe make an appointment to see your GP to discuss all your concerns and ask if he/she can contact the hospital and get an earlier appointment for you.
Otherwise, I believe that those of us with brain disease/dysfunction should try and avoid comparing ourselves with each other as we are all so individual in how we deal with things and, of course, in how the condition progresses and any medication affects us. Sharing info on how to do things in daily living is one thing, but comparing symptoms just doesn’t work as we each can’t know the full extent of each other’s experience.
Have you been in contact with Parkinson’s UK? When I was in my “Parkinson’s era” I found it a great resource – there’s even a Forum where you can share experiences and info, and a whole section on Information and Support.
I hope that is useful!
🙂
Joanne
Sorry about mistakes and calling you Eileen. Didnt typce that buy I muddle my word these days