Forum Replies Created
May 7, 2020 at 3:19 pm #18568SteveParticipant
Thanks for sharing yours and your uncle’s experience. I have taken a look at the TouchPoints and it does look interesting. Anything that might help is certainly worth a try so we will probably be purchasing some.
All the best,
May 1, 2020 at 12:09 pm #18550SteveParticipant
Hi and thanks very much to all of you for taking the time to reply with your thoughts, advice and best wishes. It is very much appreciated.
@Phil, my mum does have my dad with her who is doing a great job of looing after her and luckily is in good shape so has no problems in that respect.
I agree re the neurologist and doctor being the ones who need to advise re the meds but unfortunately, she still, after 6 months or so of being on various medications does not seem to be improving with the anxiety being a big part of the problem it seems.
@Jean – Thanks for your kind words. Re my mum’s mobility it’s not great as she also has issues with her knees and had a partial knee replacement a year or two back which was semi-successful so that doesn’t help with the mobility. She is 72.
The Rock Steady Boxing looks like fun. I fancy it myself!!! Maybe it would do my mum some good to punch out some of her frustration 🙂 She currently uses an exercise bike but not as often as she probably should.
I will pass that suggestion and the Dance for PD suggestion on to my parents. The only thing re that type of activity at the moment (apart from Covid-19) is that she does not feel well enough to go out really or even have visitors.
Thanks also for the book reference. I will look to get a copy of that.
@Marlene – Thanks for all of your advice and insight too. Following your post, I mentioned the anti-depressant option to my father (who I speak to more than my mother). I’m pretty sure she is not on any at the moment, so it is worth looking in to. It seems that the medication for anxiety is not working.
Also totally agree are the exercise and classes which in my opinion are a great way of getting exercise as they are more enjoyable and motivating than just trying to exercise on your own. The hurdle here will be to get my mum to get involved.
It’s great to hear too that you have managed to improve your quality of life significantly since 2013. I hope you continue to enjoy life and that we all get to travel again in the not too distant future.
@Russ – Thanks a lot for the suggestion. Certainly worth looking into.
@Laura – Thanks for sharing your experience. It also looks to be similar to my mothers in various ways. They have been and are trying various combinations of meds, some of which seem to make her feel worse it seems and she therefore is tempted to give up on them after a short while but as Phil mentioned above I think she needs to be more patient with some.
When you mention “it’s like going out of your mind”, that is certainly a feeling that I think she is suffering from.
I see you again mention anti-depressants, so this looks like it is definitely worth investigating, as are your other suggestions.
My dad mentioned that a couple of weeks ago she seemed to go catatonic (wasn’t moving, just staring into space) for a long period of time one morning which the doctors put down to a severe panic attack so again looks to be similar to what you and others are describing.
Thanks again, and we won´t give up 🙂
@Steve – Again, many thanks for your insights and advice. All of this is certainly going to give my father and I something to think about and explore.
The time release option sounds interesting (Rytary). It seems that the PD drug that my mother is currently on (Madopar) works for her for about 90 minutes and then she has a bad 2 hours or so until the next dose so that upsets her too as she knows she’s only going to feel better for a short period of time. I think she takes a slow-release version of the drug at night before she goes to bed but basically does not seem to get that much relief from the PD symptoms and has to take sleeping pills otherwise the shaking keeps her awake.
Re the DBS and focused ultrasound, we are aware of those procedures and will probably look into them further as the Covid-19 situation improves. The shaking is a very big problem for my mother and one of the things which seems to cause a lot of her anxiety.
@Argya – Thanks for sharing your experience. It seems that the balance of the correct drugs is the key as the fight is against both the PD and anxiety/depression and at the same time It does seem that my mum needs to try and persist with some form of exercise and more interaction with other people. Both my father and I do notice that she perks up when we have a skype conversation and gets to speak a little with her grandchildren here in Spain but she does not seem to really want to interact with others at the moment.
I want to thank you all once again for your kind input and advice. I don’t interact too much on-line (even though I´m in IT) but this has been an amazingly positive experience thanks to your willingness to share your own experiences, knowledge and time.
I certainly think that the information that you have shared provides us with some interesting areas to follow up on.
I wish you all the best for the future and hope you are all managing to keep safe through these difficult times.
I will be sure to let you know how my mother gets on.