Hi I was diagtnosed with PD 8 years ago and have tried to stay active…Until a couple of weeks ago I was going to tai chi twice a week and modified zumba once a week. I had a setback, great difficulty moving in bed, very tired. The hospital said it sounds as though Parkinson’s has ‘moved on’ and advised me to increase tablet intake to effectively five times a day. My movement is better but I’m still tiring very easily and don’t think I could sustain an exercise session.
Has anyone gone through this? Do I wait a bit longer before returning to exercise or start now taking it very slowly?
Hi @lynlace,
I’m sure you’ll receive some advice from your fellow members soon. However, you are more than welcome to have a chat with one of our advisers via our confidential helpline about your exercise concerns. Please give us a call on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].
Best wishes,
Reah
Hi Reah, Thanks for this advice. I’m going to see a new Parkinson’s nurse tomorrow but I’ll keep your advice in mind.
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Hi @lynlace,
You’re welcome and it’s good that you’re going to see your PD nurse tomorrow.
Best wishes,
Reah
You haven’t actually tried an exercise class since the setback though have you? Attend the class and explain what has happened to you - your instructor should tell you to do what you feel you can do. Maybe just trying is sufficient incentive to get you going again. Alternative is just too grim. You sound a sparky person whose just temporarily lost that spark. The eight years you’ve had sound active so well done you and now is just too early to give in. All the best. Fizzy
Sorry to hear how you are struggling. I was diagnosed about 14 years ago having had illness since early 20’s. I have always been active and it can be very difficult to adjust to the lack of movement and tiredness that comes with the progression of the illness. Last year for me was terrible re exercise and I put a lot of weight on. I had to find something I could do within the realms of my limited ability. Having always been an avid swimmer I thought swimming would be good. However I have discovered that my legs wont work in the pool and I cant swim. This has been very upsetting. Not one for giving in, I made the decision to walk in the pool. I feel bit of a prat, cheated of my swimming but also I feel positive that Im doing something. There is always a different slant to discover or even something new. Talk to the tutor as mentioned before. Dont give up. Exercise is so important. Start by putting music on and dancing at home? Good luck
Sometimes I am really stiff in the morning but if I took that as a measure of how to pace the days activities I would never leave the house.
I went to Zumba last week for just the second time and had major brain fog. I think ‘cognitive overload’ would describe it fairly accurately. So much to concentrate on… I saw one lady’s face covered in sweat – not me - I was willing myself to move but not much was happening. But I’ll go again as something is better than nothing and hopefully I’ll do a bit more next time.
In the gym using the machines I can switch my brain off as I do my little routine. No need to struggle to keep my eyes open to copy an instructor.
I tried a ‘core’ class a coupe of times. One exercise involved lying on your stomach raising arms and legs and making like you were swimming with your arms… By this time I was getting pretty slow and my right arm was feeling like lead . At the end of class I have to walk the length of the gym to get to my trike (recumbent) – pretty bad that day feet sticking to the floor…
I recently started yoga again – by accident - when I had a problem booking online for the core class. Not so fast as Zumba so easier to follow. And I have enough strength to hold the poses now. Don’t think anyone minds my arms going all over the place (dyskinesias). Hopefully that will stretch the parts I’m not covering in the gym
You can try any class out as they are all included in the gym membership & there is outdoor swimming in the lido as soon as the water is warm enough for me (heatwave).
I just do half an hour in the gym which is fine for me - 3 times a week. The classes are an hour long. At the weekend I will usually walk with my walker to do the shopping & as long as it’s sunny I don’t mind how slow I am.
Cycling is a piece of cake compared to walking – I don’t have to think at all about pedalling. Just have to make sure I have had enough sleep as my eyes will be better.
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Hi lynlace, I know from bitter experience that the sooner you start back, the better! The exercise will never be bad for you. I too had a break from it, and am now making tentative moves back, but I am definitely not as good as I was, and my confidence has hit an all-time low. Never give up on a good thing, as the song goes!!
My dad has parkinsons (2 years approx.). Are you assigned a Parkinsons nurse, or do I have to find one for him? We have only seen a neurosurgeon 3 times in this time. It would be good to be able to ask a nurse some questions
Hi @Tracey72,
The referral process for accessing a nurse differs depending on where you live. In England, nurses either work in the community or in a hospital.
Nurses who work in the community have a designated area, and can only see people who are registered with GP surgeries within it. You can check with your surgery if they have a nurse available. We have more information on this via our website here: https://www.parkinsons.org.uk/information-and-support/parkinsons-nurses
If you give our helpline a call, one of our advisers can arrange for a Parkinson’s nurse to give you a call and answer some questions that you have. Please give us a call on 0808 800 0303 or email us at [email protected].
Best wishes,
Reah