A little about myself. I served in the forces (Army) from 1975 till 1989 when I left I found a job in charge of security for Preston Council and done that for about 2 years. I then took up office work and ended up a project manager for Hewlett Packard working on the DWP account. I retired in 2015.
I was a member of my local Gym for over 20 years as I’m a great believer in fitness I also used to do a lot of fell walking and take people from the Gym, work but also children as we used to be Foster carers for several years.
I also used to help run a charity called Pendle for Romania from 1992 for about 10 years, we used to drive to Romania up to 3 times a year and take essential equipment to orphanages, hospitals, old people’s homes etc. We also used to work to improve the conditions everything from painting to putting in showers, toilets, windows replacing beds taking clothes and shoes especially for the children.
In early 2017 I started having odd symptoms such as stiff legs balance problems and double vision so went off to visit the medical world. Two and a half years later in September 2019 i was diagnosed with SCA 6. I still do exercise and recently started to exercise the Cerebellum as the only professional help I’ve had is a prism fitted to my distance glasses which gets rid of the double vision.
Hi Paul, welcome 🙂 SCA6 is fairly common, you’re in good company here 😉 My own ataxia is still in doubt, I have a link with a mutant gene SYNE1, but it isn’t 100%.
Dear Paul456, A HUGE welcome to you! You'll find many lovely people on this site for support and advice! I've had ataxia due to Niemann Pick C disease for 20+ years now. I find exercise for strength and balance helps me. My best to you..., ;o)
Hi aburt449 thanks for the kind words. Keep yourself safe and happy as much as you can don’t feel pressured to do something you don’t feel comfortable with. You take care my friend.
Hi Paul - what a wonderfully full life you’ve had. Your work in Romania is so interesting and admirable.
Like me you sound to have developed Ataxia later in life (I had first symptoms - slightly slurred speech- when I was 71). I was diagnosed with SCA6 in 2016 and I am now 79. As you know there is no treatment for the condition other than exercise, exercise, exercise! I was interested to know what exercise you do for your cerebellum?
Have you joined Ataxia UK? They produce a helpful information sheet about SCA6.
Hi Libra7 Romania was indeed a very worthwhile project but also had its mixed emotions to see such suffering in this day and age especially when it involves children. The exercise ive devised for the cerebellum is to help with coordination and balance such as standing on one leg, passing a tennis ball from one hand to another or throwing it up and catching it, walking toe to heal in a straight line. I do step ups on the house stairs stepping up one step then down every left foot up is an odd number and every right foot is an even do this as many times as you’re comfortable with. Hope this makes sense. I stress this has only come from me and not a professional. You take care.
Welcome Paul. Your previous roles are truly amazing. You should be very proud. Kudos to you.
Keep up the good work - exercise & keeping as active as you can, safely, is the best thing you can do. Don't overdo it tho as it can be counter productive. I also think your previous healthy activities will stand you in good sted! A healthy body & mind keep us going in extremely difficult times - I'm a firm believer in this. Keep smiling (with gritted teeth sometimes lol!😁).
Hi Ginger1 thanks for your compliments much appreciated. You’re absolutely right about staying active, when I was first diagnosed I just wasn’t sure what I should do as this is a brain problem and not the body but finding my way now. I do tend to overdo things (old habits die hard) but suffered for it later. Stay safe my friend.
Welcome Paul, sounds like you're a very good man! I've found exercise & a positive mental attitude really helps. The exercises you mentioned, a physio advised me to do thosend exercises, so your on the right lines. ☺
Hi Carol31271 Thank you it hides all my evil deeds. That’s good news, I’m going to be off to a good start when I eventually see a physio. You stay safe.
Hi Doly63 Yeah everybody is really friendly and helpful which is just what we need. There’s a wealth of experience and knowledge so keep in touch. Good luck and stay safe.
Welcome Paul I have SCA 6 and had a final diagnosis with a blood test about a year after I first had symptoms 20 years ago.As well as the deterioration in my mobility I have had prisms fitted in my glasses only 2 years ago.I recommend an Ataxia clinic if you are able to get to one.Is Sheffield too far away ?
Well done for your charity work in Roumania,we were involved with charity work for 50 years and found it very rewarding,but not like your dedication.
Your exercises were also recommended to me by a physio,keep moving.
Hi Trinity Hope you are well. 20 years to be diagnosed is a real long time to find out a medical problem I thought I was bad with two and a half years. I have mobility problems and need a walking stick to get around also my balance is not good or coordination. I attend an Ataxia clinic in London from this year and will go twice a year starting in September. To do charity work for 50 years is fantastic so really well done. The charity work used to help me as much as the Romanian people it put my moans and groans to shame. A lot of my work was done in the orphanage for the mentally and physically handicapped children which is by far the worst place I’ve ever seen in my life.
I think I might have confused you - -I was very lucky to have a diagnosis about a year after I first suspected that I had inherited this debilitating condition .Take care.
Welcome Paul to this site. It's very knowledgeable and nice to know your not alone with this disease. My husband also has CSA. He to was very physical and active . He came down with this disease in his early sixties . He doesn't like to go for long walks anymore because he staggers and anyone that sees him thinks he has been drinking and appears drunk. He desls with this disease and would trade anything to get rid of it. He realizes he has to accept this disease and carry on with life and knows it could be a worse disability. Yes its frustrating and depressing at times and
You have to work around it. Keep your chin up and realize there's allot of people that have worse diseases.
I think it sometimes takes a long time to come to terms with as it can be such a debilitating condition and as mine is inherited I worry about my daughter getting it. My systems started in my late fifties but I’m happy is wasn’t earlier.
I know exactly what you mean by getting seen as a drunk but don’t let that stop him doing what he likes and needs to do. Get him and T shirt with I am not a DRUNK I’m ILL printed on it. The condition makes you a different person in many ways so for me I’m now a new Paul with a new life so I try to adapt to this new person, which is really hard but doable.
I do cerebellum exercises to help with balance and coordination such as standing on one leg, walking in a straight line by putting heal to toe, throwing a tennis ball from hand to hand in a sideway fashion and up and down.
I also do step ups on the stairs by stepping up and down just using one step, I count as I do them with every odd number I step up with my left foot and every even is my right. This is good for general fitness and coordination.
I stress these are not from a professional as I haven’t seen one yet.
Double vision is fixed by having a prism fitted to your glasses which is just a transparent piece of plastic (I think) that you don’t really notice but will fix your double vision problem.
Many thanks for feedback and insights for queries. I will look to fix my spectacles with prism and to add some of these techniques for cerebellum exercise. Thanks a lot!
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