Hello steve2 and mary1947
It seems to me that the further you go down the road with any condition (I say that because steve2 they don’t seem to be able to decide what you’ve got) more and more different professionals get involved (which I was aware of and have always been dreading reaching that point) which is precisely when the joined up services are needed most but are just not there. No-one takes the lead responsibility with a co-ordinating role so that all the professionals involved can share their specialist knowledge to help the design of a treatment programme or at least understand the key issues etc; it might be then that even if there are still more questions than answers because medical science doesn’t have all the answers, we can at least be reassured they are all on the same page. Time and time again different budgets and guidelines for policies and practices don’t seem to marry up and there seems to be little flexibility that, in reality, allows for joined up services (or that other big aim of client centred practice) to actually happen. With a condition like Parkinsons which is so variable in just about every way you can think of, I believe flexibility of services is not only important but necessary. Sadly I am doubtful it will happen in my lifetime and I think we have to be prepared to defend our corner as best we can and jump up and down demanding our voice is heard and more to the point be prepared to take responsibility as far as one is able ( and not everyone can do this which leaves them very vulnerable in my opinion) for management of their condition themselves. It would be nice to be proved wrong. I may not be 100% accurate but I’ll bet I’m not too far off the mark. We can only carry on, however hard it gets, and be proud that despite everything Parkinson’s hasn’t yet won the war - and for as long as I am able Parkinson’s will have to make do with winning the odd battle because I will be doing my very best to even the odds by winning a battle or two myself.
Sorry you are both having a hard time just now but you have both come too far to not keep going. I hope you both find the energy and fire to challenge the endless professionals involved as to what they are actually trying to do or whatever you think about your own circumstances, since you both, it seems to me, are heading up a path which ends in a dead end.
Tot
Well its really difficult to read your story steve and marys, as my own hwp is going thro his own downturn in parkinson’s symptoms. Removal of his ropinerole and opicapone has left him seriously wearing off far too soon. As tot has replied to you both, directing the professionals to offer you a bespoke answer to your own particular set of symptoms is a challenge in itself. We are finding services very much not joined up. But, i plod on, advocating for my hwp, emailing the pd nurses with his symptoms and asking for support and a plan to assist his day to day. Its exhausting having to do all the coordination myself. But we all deserve the best of care. Its awful when the condition decides to throw a change our way, but i wont lie down and wait for them…not to phone me! Hope you both get some relief very soon…every monday is a new week starting…today may be a better day
I think my feeling to being told I might not have Parkinson’s by my latest neurologist is interesting. In fact I was disappointed. What an odd reaction.
When something is wrong with us it is better to know what it is than not.
Not knowing what is wrong for me, is incredibly frustrating.
I agree with you Tot in that I think they will never find out what is wrong with me. It is only me being proactive that anything is happening at all.
When a patient goes to their Parkinson’s nurse or GP the first thought by the professional concerned is to throw some more medication at it. There is rarely any follow up and you are on that medication until you do something about it.
I was on around 20 pills a day and am now on 7 pills a day. A big chunk of this was the Parkinson’s medication I was on. The Parkinson’s medication and the Clonazepam I was weaned off bit by bit, not all in one go.
I have felt different in a negative way this past week and I wonder whether my body is telling me that I do need the Parkinson’s medication I am no longer taking OR whether I am having withdrawal symptoms that will improve with time.
I still have this weird feeling inside of me. Something I am struggling to describe. It is this that is preventing me from bowling. I have less control over my legs and arms.
Oh well no bowls today so I am off to do my 200 yard walk.
Good morning jandc … Many thanks for your kind & thoughtful reply. I sometimes wonder whether it is better to have Parkinson’s or be the other half of someone that has Parkinson’s. I certainly think living on my own is better in a lot of ways.
Although twice this year I have got myself into a situation of not being able to firstly get out of the bath, where I eventually got out of the bath after trying for an hour. The second instance was getting up off the floor, I had Covid, where I phoned an ambulance.
Do remember to have time during the day for you & your mental health,
Hi Steve ,
I came across something for balance the other day, walking backwards.
I thought that sounds easy but when I tried I had difficulty for backwards. I practiced in the corridor next to a wall and can now engage reverse walking. I was astonished I couldn’t do it at first.
A trick we use with horses when they freeze is to ask them to backup, this breaks the phycological block by taking their mind of the fear. Wether it would work with PD I don’t know. Worth a try once you can get reverse sorted out.
Interesting Lar and always worth a try. If at first you don’t succeed…so well done on your reverse walking. I find if I just keep moving even on the spot, or shifting my weight from one foot to the other, stops me stiffening so much when, for eg, waiting for a bus or in a queue and I can move off more easily wih less chance of freezing.
Tot
Hello Lar … I have had quite a bit of advice but this sure does take the biscuit LOL.
I sometimes nearly fall over walking forwards, especially if I have been seated for a while. So walking backwards is something I will not try I am afraid.
I have done a few physiotherapy courses & there are a few things I cannot do like walking, heel of left foot to right foot toes then right foot heel to left foot toes.
I would like to thank you all for your post and I am sure Steve2 agrees. I would just like to say, i don’t think Steve 2 and myself just natter about Bowls because I used to play indoors and out doors for about 10 years so its newbie V old timer, Its not just having PD but all the other things that get thrown at you. Problem other illness that come along and slap you in the teeth,joining the oap club did not help. but come c come sar we will over come, and if you do not try anything etc like bowls / Dancing/ Tai Chi/ walking going up and down steps etc, then we might as well not be here. What is it they tell you !!!KEEP MOVING!!! well we all try., but we are never going to get our lives back to as they were, so think what your next battle will be. Once again thank you to all posted Stay Safe. PS \Come C Come sar I know it is French but i do not know howto write it down in French. sorry