In November 2018 I had my first appointment with my MS nurse while I was with her she suggested a number of referrals one of which was to the physiotherapy team.
A couple of months later I received a call from the physio and she came to see me at home and gave me some exercises to do and she also brought a colleague with her who took me walking up and down the street with my walking stick, making sure it was the correct height and showing me how to walk up and down kerbs etc.,
I probably didn’t keep these up because in the back of my mind was when I was being treated for chronic fatigue syndrome one the recognised treatments is called graded exercise therapy and even though and it’s not reported to be very successful so I probably pushed against it and didn’t do what I should have done.
Moving AreaLast year when I moved to where I am now I changed #CCG areas so my physio didn't cover my area and I had to be referred to a different physio. Click To Tweet
Last year when I moved to where I am now I changed CCG areas so my physio didn’t cover my area and I had to be referred to a different physio.
In fairness, I got an appointment very quickly and the writing should have been on the wall in the fact he was an hour late for the first appointment and didn’t contact me to let me know he was going to be late.
When he finally arrived he carried out a number of tests with me testing my reactions on both sides he did strike me at that point he was in a rush and I can’t remember what else he did but I know at the end of the test he informed me my left-hand side was operating at a score of 1 where is my right-hand side was operating a score of 2, he booked another appointment for a fortnight’s time and informed me he would return with an exercise program for me.
This time he was an hour and a half late and had brought a colleague with him no mention of the exercise program but as I had mentioned balance issues he had carried out some research and decided I could benefit from doing BEEMS exercises.#BEEMS exercises are exercises where you follow your finger with your eyes this can be done looking side to side, looking up and down, with your eyes open and then closed. Click To Tweet
BEEMS exercises are exercises where you follow your finger with your eyes this can be done looking side to side, looking up and down, with your eyes open and then closed.
He explained to me after thrusting a piece of paper at me with the details on and a score sheet attached that I had to do these exercises 10 of each 3 times a day there were 10 different exercises to do and he wanted me to try them while he was there so that I knew what I was doing.
Starting with the first one I had to hold my finger up in front of me. and follow with my eyes moving from side to side this was only the first exercise and already I was starting to feel sick. I started to do the next exercise which was my finger going up and down with my eyes following it up and down I had to stop after 3 goes because I really needed a drink of water, after sipping some water I started again and this time I was sick.
It was obvious that the physio was running late so he left me with the sheet and said he was going to ring me the following week to see how was getting on but I was to continue to do the exercises 10 of each 3 times a day and fill in the score sheet.
He rang me on Wednesday of the following week and I said I’d really struggled with the exercises but he insisted I persist with them and that was the only way to make progress. Now I don’t know about you but if something is making me sick I really don’t want to do it.
The physio was due again the following week at 12:30 and it got to 2pm and he still hadn’t arrived. On trying to get hold of him I had to leave a message and I never heard anymore.
So I rang my MS nurse and told her what had happened, explained about the exercise program he said he would write for me and then the BEEMS tests and advised her it was probably best for him not to come anymore.
Anyway, this was to explain the struggle I have had to get physio support with my MS and how grateful I am once again to the MS Society, this time the MS Society Scotland who through the Time to Chat sessions offered me the opportunity to attend an online session with a company called Move4ward and I had my first session last week.#Move4Ward specialise in #Neurological conditions to help maintain #Mobility, #Strength, #Balance Click To Tweet
Move4Ward specialise in neurological conditions to help maintain mobility, strength, balance and function brought on by ageing and in degenerative conditions and chronic illnesses such as MS, Parkinson’s, MND to support continued independence.
Because they specialise in these conditions it means they can tailor the exercise to the individual clients and they have a greater understanding of the issues we experience.
They recognised my own issues of foot drop in my left foot, my left-hand side weakness and my balance issues, I also managed to explain an issue that I have when I’ve been stood for any length of time and I don’t mean that in minutes probably more like seconds where my blood pressure drops and my heart rate goes up and and if I don’t sit down I will pass out.
Having spoken to my neurologist, my MS nurse, had numerous trips to A&E and my GP and nobody could give me an answer all just put in down to MS.
But they gave me an answer for it along with an exercise I could try which is the pump your feet up and down in effect pumping the blood in my legs and I’ve tried it twice now and it’s working I’m not saying it’s a long-term fix but it’s something that will take the feeling away of going to pass out.
Then we came onto the BEEMS for vertigo and balance issues which might I add are part of MS symptoms even though my previous physio didn’t associate with them and because of my experience with the local physiotherapists I was nervous of even trying, but they explained straight away you do these exercises and you stop when it causes you problems you don’t try to push through it.
So I’ve been doing the exercises since and I know it will be a slow process but I will continue and who knows I might even be doing the Beyonce single ladies dance as at present I can only drop my right hip, not my left.
Therefore, if like me you have had a bad experience with a physio or not even seen a physio, then please jump on one of these webinars you are under no obligation and can do everything at your own pace, you can see the physios and other attendees doing the exercises and just think of the information and the knowledge you will take away.
One of the statements I see regularly in groups is my health practitioner doesn’t understand, well I can guarantee Move4Ward do!
The next session is on Wednesday the 20th of May at 10:30 you can book here.
Please also check out MS Society and MS Society Scotland Eventbrite links because they’re open to everybody across the UK at the moment, Time to Chat sessions, regular COVID-19 updates with neurologists, benefits advice, meditation, fatigue, cognitive session there is so much to chose from. Oh and not forgetting the choir in training for World MS Day on the 30th of May.
This wasn’t going to be a long post it was just to explain to you and to also promote the MS Society from whatever angle I can at the moment because I honestly don’t know what I would have done without them over this lockdown period, I am making new friends daily and seeing a different future now.
Feel free to check out the links and hopefully I will meet you on one of the sessions.
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