May I ask please whether how I feel is familiar to any of you?
I was diagnosed last October (should have been the previous January) and am not currently on any medication as my lifestyle is not really affected. However, my wife and I have noticed that my movements are slowing down and life can feel that I am trying to move up to my neck in a swimming pool rather than on dry land.
When I try to move quicker, my body responds and will do what I ask of it up to a point. The weird thing is that it is my mind that 'shouts' at me to slow down. When I do slow down, my mind settles down too.
I am on 75mg daily of Venlafaxine for anxiety. It may be wishful thinking, but I don't think that I have depression.
Odd I know, but does this ring any bells with anyone?
John (aged 64)
Before medication,Madopar, I felt like I was wading through treacle, froze and shuffled. All these have now disappeared but I still have a tremor particularly when stressed or tired and am waiting for cognitive behavioural therapy to help to handle the anxiety. Not sure whether that answers your question but I wish you all the very best.
Thank you Samdog for your very helpful reply.
I am beginning to think my 'moving in water' feeling must be in my head. We pulled on the walking boots this morning and went for a shortish country walk, during which my movements felt (and I am told, looked) very smooth and just like the old days. Yet as soon as I got home, I noticed the mind or body wanted to pretend they were in that swimming pool again. I gave myself a stern talking to!
You and I do have some things in common. My tremor gets much worse with stress (I guess most do) and I am also waiting for a course of CBT for anxiety. Before I suspected that I had PD, I had an extremely good course of ten 1:1 CBT sessions for depression. It was very effective, but just as the course was ending, PD reared its ugly head and I rather fell to bits. I am really looking forward to my next course which should start soon.
I recommend 1:1 sessions if you have the choice. If you would like to discuss CBT further, do please let me know.
Very best wishes
Maybe you were relaxed on your walk and therefore able to stride out more smoothly and rhythmically. I think many PWP s describe their movement as you do ie like wading waist or neck high through water. As I said medication has relieved that symptom for me.
My cbt starts in about a week. It is 1:1 and I m looking forward to it which is surprising as I normally get very anxious about most new things! I would be very interested, as I m sure other people on the forum would, to hear about your experience of cbt.
Look forward to hearing from you
Also diagnosed last October, 67 soon So far refusing to go on Madopar due to my fears about side affects which could appear 3 years or so into medication. Involuntary movements are most unwelcome.
Too tired to say much right now - rather tired. However all you have said is so true for me. Thanks for helping me feeel less isolated in my questioing.
Sorry my response is a late one; I've been traveling. But I wanted to answer your initial question -- yes, your feelings definitely ring bells with me. I, too, was slowing down before medication but could speed up any time I put my mind to it. As it was explained to me, PD gives the patient a new sense of what is "normal." Hence, your mind shouting at you to slow down, because slow feels right to us. Even on meds, I still have a new sense of normal in regard to using a knife. Due to the poor communication among muscles, nerves, and brain, I hold the knife at an angle, not perpendicular to what I'm trying to cut. If I think about it, I can readjust the knife, of course, but it doesn't feel "right." It's a strange sensation from a strange disease!
Thank you all for your helpful replies.
J of Grey Cottage - your comments on a new sense of reality are new to me but they certainly match my experience. I have found it very useful to keep them in mind as they throw a new and very useful light on to the way I move and think. Yes, I can move normally at present; I am lucky. However it certainly feels contrary to what my mind considers normal. Thank you so much for this new way in which to see my world.
Aber-wells - I am delighted that my question has helped you.
Samdog - I do hope that you enjoy your CBT sessions and that you find them useful. I am sure that you will. It is not a psychiatrist chair atmosphere and they will not 'cure' anything or give you answers. What they do give you is a realisation that it is not the situations that we face in life but how we react to them that causes the problems. That is CBT in a nut shell. Be confident that it will help if you let it, trust your counsellor (it is totally confidential), be completely open about your problems and fears and above do not get embarrassed when the tears flow. They have seen it all before.
My CBT course was over a year ago and I am convinced that it got me through my PD diagnosis without panic and deep depression.
Closely allied to CBT is Mindfulness Meditation which centres on the need to forget the Past (history), do not worry about the future (fantasy), but live in the present moment. My CBT counsellor was also very keen on MM. My wife and I went on an MM course a few months ago and the combination of MM and CBT gives you excellent tools to deal with the emotional effects of PD.
There is a thread on MM currently elsewhere on this Forum.
My best wishes to you all. Samdog, do keep us up to date with how you find CBT.
Prior to my diagnosis in October last year at the age of 48, my friend told me that watching me do anything, including walking, was like watching a slow motion film. It was as though I had to carefully consider everything I did. There was no relief from the slowness and the tremors at all. When I started my medication the improvement was so dramatic at first it actually scared me as I had got so used to the symptoms I had. I still have symptoms and many days where my legs feel like lead but medication has been my saviour.
I agree with Promise, some days since starting medication 4 months ago I forget I have Parkinson's I just hope the medication is effective for many years to come.