Hi everyone, my name is Sam and I’ve just joined the forum mainly for finding out any information that can assist my mother who has Parkinsons. She is 73 and was diagnosed 6 years ago. Sometimes she does suffer quite badly with bad back, muscle aches and bad cramps in her feet. It is awful seeing her struggle so much and it would good to learn from others on tips and suggestions on how best to cope with these and other problems that people experience. Unfortunately my parents are not online so I’m hoping to share what I learn from here with them.
Hi Sam and welcome to our forum. Watching loved ones suffer is never easy, but you’ve come to the right place for information and support. I’m sure our friendly forum members will be jumping in soon to share their experiences with you.
I’d encourage you to read the information for carers on our website. You’ll find lots of tips there, including how to care of yourself, a very important part of helping someone else.
If you have concerns or need advice, please call our helpline and local advisers. They can support anyone with Parkinson’s, their family or friends. Call 0808 800 0303 to get in touch.
Forum Moderation Team
Thanks Janice. It is very difficult seeing my mum struggling but hoping that can find some helpful and positive experiences rom forum members. I have passed the helpline onto my dad for support and advice. I look forward to talking to fellow forum members in the future.
Hi Sam. Have you looked for any information from your local Parkinson’s group? Often they offer exercise classes or just a social grouping which your mum might enjoy. It would allow her to share her experiences and hopefully pick up a few tips on managing her PD better as well as making new friends, Lockdown has been hard for everyone so do encourage her to try and get out and about.
Hi Fizzy, thanks so much for your message. You are so right. I wanted her to have all that as think she would enjoy it, it’s just getting her to go!
I have given my mum information about local groups but I think she’s apprehensive to go because she’s worried about seeing others with my progressive symptoms which would worry her. I completely understand but she is very stubborn and just dismisses it when I mention it. I have sent her details again this week and emailed the group myself to find out some more info which may encourage her to go if she finds out a bit more.
Hi there. I’ve had PD now for 8.5 years and it is the others in the group who make it bearable. Your mother might see someone with more advanced symptoms but she might also meet someone who has found way round pain, bad cramps and all the myriad of small things that irritate, anger and frustrate her - what a bonus. I do understand her reluctance but I speak from experience when I say that that is far outweighed by the support and understanding you get from others. If you can take a day off and go with her to a monthly meeting where there is a topic of interest to her maybe you might help change her mind. Exercise is helpful both physically and psychologically and gaining information about drugs that she is offered, the way the Neurological Dept at your local hospital is staffed and how appointments are offered will all help her to feel more in charge of such a random condition. Good luck.
Thanks Fizzy, that’s so helpful. I’ve printed your comments out for her to read as I found it so inspiring and sure she will do too. I’ve emailed local Parkinsons group so I hope when meetings can restart again I can encourage her to go - I’m happy to go with her so keep your fingers crossed! She also made contact with her Parkinsons Nurse after a lot of nagging (she doesn’t want to bother her!!) and she has visited this afternoon so I’m hoping it’s the start of her accepting a bit more help and in turn feel more positive and regain some strength to move forward. Thanks again
May I also suggest you look at the information and support booklets and in particular the magazine. You will need to select what is appropriate but you can download these or get hard copies. They are easy reads and there are a lot of positive stories. You might also want to take a look at some of the other posts on the forum especially the introductions one. You will I think find the responses interesting in that the posts often have repeat themes and the replies often say similar things - I think you will find that whatever your mum is going through or thinks about Parkinson’s will be found there somewhere. You could print off some if you think it will help. Just thought it might be something you might want to consider
I’,m 72 & was diagnosed 9 years ago (!!writting it down is scary) & I really suffered from foot muscle cramps where my foot would literally claw under, which was awful if I was wearing boots. My PD nurse upped my meds (Sinemet) which helped although I occasionally get twinges & also have muscle aches but I find that a hot water bottle helps & rotating my feet. I already had a bad back & an op so that’s left me quite inflexible. But I would suggest your Mum joins a yoga or Pilates class as that helps. Also call an NHS physio-- although thye’ll email you exercises you can print them out for your MUm
Thank you for taking the time to reply, it’s really kind of you. And thanks for sharing your experiences - I have printed them out to show my mum. She also suffers from foot muscle cramps where her foot curls - so painful. I’m glad you have found some release with increased meds. Thanks for the tip about hot water bottle, I’ll suggest that to her. I think she would enjoy some sort of yoga/pilates class so we’ll see what’s around when things open up again.
It sounds like you’re doing great coping with PD and your other health issues - thank you for sharing your positive outlook. I’m sure it will help my mum too.
Have a good day, Sam
I find myself (probably started about two months ago) having a ritual toe-crossing episode each morning. It seems to be triggered when I curl my toes to gain balance on hard surfaces. Thus, it occurs on bathroom floor or when in shower. Although it doesn’t exactly hurt, it renders the foot useless and makes movement problematic.
It improves when I don socks and shoes. As mentioned, it occurs every morning without fail, irrespective of different med regimes.
P.S. My legs also lead me a nightly merry dance and I feel compelled to do extraordinary scrunches on my muscles when I wake. Just started neupro patches to see if this helps. Early days, but I can feel myself becoming more twitchy before bed and also very dizzy in the day.
But never mind - It’s a beautiful day.