For quite some time now, I have been going to a support group for people with Parkinson’s and their partner/spouse/support person. The group is a very comfortable place for me, and I am sure for others to connect and get support if needed. Often, we meet and we might catch up with what has been happening in each other’s lives, with little or no reference to Parkinson’s. But of course, the reason this group gathers are just below the surface and people can get support from the group if needed. The group meets on the third Monday of every month at a local club which also has meals and drinks. Most of us tend to buy a meal and eat as we chat.
Last night I felt that this was the most interactive group we have ever had. We shared a number of things, and it was really nice to connect and share experiences. There was a variety of topics discussed, and I will try to recall what some of them were. Note to self. Jot things down before you go to bed, so you don’t have to try to remember in the morning after!
I had brought with me a couple of things that I thought could be useful for the group members. I have discovered a rub on cream for pain that is both low cost and effective. It had been recommended by a pharmacist in Queenstown and I have used it ever since. I use it mainly on my feet for my arthritis and I do pretty much instantly start to feel relief on application. It is called ‘Evoflex’ and not only is it cheaper than anything I have used, but more effective. I know that a lot of us have pain from one source or another. Parkinson’s comes with stiffness and pain, but so too does arthritis and I am not alone in experiencing both. I also have a gel, which is good for a dry mouth which was recommended to me by a Speech Language Therapist. It is called “Oral 7 – Real dry mouth relief” and it is very good for moistening a dry mouth. A pea size amount in the mouth provides instant moisture and is good to carry round especially if access to a drink is not immediately available and I find myself with a dry mouth. If my mouth gets too dry, I can find myself gagging and sometimes even have vomited because of my dry mouth, which of course I very much wish to avoid!
We talked about travelling, as most of us have either travelled recently or are looking to travel. Swapping hints about medications and how that was managed, which mostly was a bit ‘hit and miss’ and seemed to involve, trying to get into the time zone of where we were going as quickly as possible. However, it was acknowledged that while on the plane and not much movement needed, some of us could get away with stretching out dosages if needed. We all agreed that a gap between doses would be about four hours preferably and we had all tried to keep within this as much as possible.
We talked about the importance of doing things sooner rather than later, especially when it came to travelling and not saving it for ‘when we retire’ as waiting could mean that we miss out altogether. For some the ability to travel was not an option, as the person with Parkinson’s had progressed beyond that. For some, the progression of the condition seems to have been quicker than others, but perhaps seeking a diagnosis might have been delayed? For most around the table, we all agreed that we sought a diagnosis quite early on when we noticed symptoms. We all discussed how we as a generation – below 65 in the main – were more accustomed to seeking out a doctor and wanting answers when we noticed changes than perhaps our parents’ generation may have done.
I know for my Mum and Dad, that if they went to the doctor they seemed to very much do as they were told to by the doctor and didn’t seem to question anything they were told. Mum would go to the GP and I would ask her how things went and she would tell me about some new pill, but when asked the purpose she would tend to be vague and just trust that it was needed. Those of us round the table agreed that we would be much more inclined to ask what the new medication was for and any side effects.
We talked about grandchildren and other family and the importance of spending time with them. One couple has their adult child and their spouse and young children staying with them and we all talked about the reality of having someone stay for an extended period, especially with children. Much as we all love our families we all acknowledged that with everything going on with our health, it did add a layer perhaps of complexity to our lives in this situation. Learning to live with little ones again after a gap of some significant length of time, would be quite an adjustment for any of us. It doesn’t mean we love our family any less, but that with the condition can come anxiety and increased emotion and perhaps this may be increased in supporting a young family living with us. Of course, those of us who are parents know that our children don’t stop needing us just because they get older. In some circumstances they even need us more! Plus, our adult child may not be the only one that needs our support, but also their partner and their children.
For a change, when I got to the club where we meet, the group had arranged quite a few tables to form a large square. Previously, we had kept adding to the end of tables till we had a long table. While everyone was able to be seated, it meant that we could not engage easily with the group beyond a certain point because we were too spread out. Having the large square of tables arranged meant we could engage around the table more effectively. I also noticed that many of us left our seats and sought out others in the group and so we seemed to circulate more and speak to more people. It felt like a really successful group last night.
One member also brought to our attention a thing called a “Beech band” which is worn like a watch and apparently can help with tremors and other effects of Parkinson’s. I won’t go into detail here as I haven’t really read up on it yet, but here is a link to check it out https://www.beechband.com/pages/stories.
The other thing for me personally, was that I was able to catch up with some of the people who had expressed an interest in my podcast interviews, which I have titled “Parkies Patter – A chat about all things Parkinson’s”. So, I have at least three interviews to arrange and I am looking forward to it. This will be available on Spotify and other podcast platforms. There are a couple of my first interview on there if you want to have a look. The other podcast is “My journey with Parkinson’s”.
Unfortunately, my husband had to work last night and wasn’t able to come.
Hopefully his shifts will allow him to come next time.
We are building a great support network, which I am sure will continue to grow stronger as we go along.
Having the group’s support will I am sure make a big difference to us all.
My journey with Parkinsons 