I should be interested to know what medication people take to try to reduce their freezing and totterering. Since I caught Covid last November I went from early stage PD to late stage literally overnight and was in hospital for a month at first with very little movement at all - not able to attend to personal hygiene or move around without support. An extremely unpleasant experience so please keep away from Covid.
I returned home to be cared for 24/7 by my “live-out” partner and between us we managed to get me moving around the house sufficiently for me to return to living on my own again - as I had been previously without any difficulty moving around.
I am now able to walk outside and take a stick with me which normally I don’t use to assist me walking but use to support myself when I stop. However, inside i do an enormous amount of freezing and tottering especially going through doorways and turning. I know this is a common problem with PD and I find myself doing a lot of cueing whenever it happens, My specialist has advised that increasing my Co-beneldopa dosage will be the most effective way to sort this out but I am reluctant to do this at present having had my dose increased twice already. I would prefer to keep going with my attempts to free walk and my exercises which seem to be helping.
If anyone is willing to share the medication or any therapy they have to combat a similar problem I should be very pleased to hear from them and very grateful.
As this is your first post, we wanted to welcome you to our community forum. We hope you’ll feel encouraged to have a look around. Our members have a wealth of knowledge, advice, and numerous forms of artistic expression to share.
We also have a website which we would encourage you to investigate. This booklet on freezing might be a good start: Freezing | Parkinson's UK. We’d suggest using the search function to find more data on this subject, as you like.
We also have a helpline, on 0808 800 0303, staffed with advisors capable of assisting with a range of needs, including questions about medication and finding you resources in your area. It’s a free and confidential service and our community raves about their kindness and efficiency.
Good evening Quercus aka Alan K … I have Atypical Parkinson’s. I am 70 years & was diagnosed about a year ago. Freezing is one of my big issues. If I stand still for more than a minute or so then I freeze & can’t move. I can’t do simple things like go to the supermarket as at some stage I will have to stand still at the checkout. I also have a problem if I sit down as I struggle to get up & again I seem to freeze & am uncertain on my feet. Once I’m walking I’m fine for a good 50 yards & I can walk normally. I also have problems with turning & getting in & out of small rooms.
I have tried Ropinirole & Madopar which did not help at all but I am now on Sinemet aka [Co-Careldopa]. This has helped me quite a bit. I don’t seem to be having the bad episodes I did have. I take 2 pills 3 times a day. Before Sinemet I had one really bad episode & was in hospital for 24 hours.
I was also referred to a Neurological Physiotherapy department at a local hospital by my GP. This has also helped me. It was a 6 x 1 hour course at their gym with a trained Parkinson’s physiotherapist. Obviously regular exercise is important.
There is also a laser-cane walking stick on the market for Parkinson’s gait freezing. Look it up on Youtube.
Thank you very much for getting back to me ,Steve - and so promptly. I fully empathise with your situation and hope things continue to improve.
Many thanks for sharing your experiences which I now can use to help me decide what to do I wonder if switching to Sinomet might help and the physio sounds good.
Best wishes
Alan K
Good afternoon Quercus … I have been an active sportsman all my life. I played competitive hockey up until 7 years ago. Then it was golf 5 days a week then I had to give that up. In September I started playing indoor bowls. I had one bad freezing episode at bowls where I ended up in hospital for 24 hours. A few weeks after that I had another similar episode but as I had this happen before I knew what it was & just stayed at home till I felt better. Then I started on Sinemet … 1 pill a day for a week, then 1 pill twice a day for a week, then 1 pill 3 times a day for a week, then
2 pills 3 times a day for ever. Since I started on the Sinemet I have had no really bad days. I can now play bowls 5 days a week in a row without difficulty. I am sure this is down to my taking Sinemet.
The Neurological Phsiotherapy course was very good. There were only two of us doing the course & there were two physiotherapists putting us through our paces. I’m sure this made a positive difference to me as I don’t have the willpower to do the excercises at home on my own. I tell myself I get a lot of exercise playing bowls.
With indoor bowls there are two teams, 8 bowlers, 4 v 4. It lasts 2 hours during which time we play 12 ends. The indoor bowls rink is 50 yards long so
12 ends x 50 yards = we have each walked 600 yards over the two hour period & each player has bowled 2 bowls x 12 ends = 24 bowls. When you are not bowling your 2 bowls you are sitting down.
Today I needed to go to the butchers & I parked about 100 yards away as there was a parking space. I really struggled physically to walk the 100 yards. I then sat on a chair in the butchers & bought what I wanted. Then the walk back … It is a cool day & I soaked my shirt with sweat so exhausted was I. My legs get really heavy when I walk & my back feels very uncomfortable.
Thanks, Steve. You sound a very fit guy to me - fitter than I am. I’m sure your indoor bowling keeps you fit and it’s also a social activity. Thanks for sharing about the sinemet - I do wonder whether this could be better than the Co-beneldopa.
All the best
Alan
Hello Alan … I was fit, but I’m not fit anymore. I have a disabled blue badge without which I could not cope. One day pre-blue badge I parked in the hospital car park after the freezing issue & had to sit down in the car park till I got rescued. I no longer have good days I just have bad days & worse days. Still life goes on. I live alone & am happy that I can still look after myself.
Co-careldopa contains levodopa and carbidopa . These can also be combined with other Parkinson’s disease medicines to treat your symptoms. Benserazide can be combined with levodopa to make co-beneldopa (brand name Madopar).
So what you seem to be taking is Madopar. I tried Madopar which did not work for me. If you are unhappy with this medication you can ask your medical team if they think changing would be good for you as it is for me.
if you’re freezing and slow it is because you don’t have enough dopamine. There may be some add on of post viral fatigue making things worse, which will hopefully improve with time. The only real way of improving it is to up your medications. There is no benefit from changing to sinemet as it is still l-dopa. If your specialist thinks it would help then I would up your co-beneldopa dose and see what happens. My drugs have gone up 8 times in the last year, that is not important, it’s the symptom control I get that is.
On a different note I wonder if a physiotherpist who specialises in parkinons might help as well.
I hope things settle soon.
I really know how you feel Steve and I think we all need to say how seriously unpleasant Parkinsons is.
But you very much seem to be strong and resilient so hopefully that will make things more comfortable.
Best wishes
Alan
Thank you Podd for getting back to me - very good of you to do so. I am listening to everyone’s thoughts on the subject to try to arrive at the right decision.
Best wishes
Alan
