Ataxia UK Ipswich and Colchester Support Group

NEXT MEETING

NEXT MEETING: IPSWICH 25TH MAY new time: 11am-2pm

Dear Members

It was a pleasure to see seven people at the Colchester meeting. Having made so many changes recently due to bad weather conditions, preferred time [11am] as well extra meetings on alternate months at an additional venue [Colchester], I was worried that no one would turn up. However, all was well. The Holiday Inn, Eight Ash Green [Colchester] provided us with flasks of tea/coffee and biscuits and we just helped ourselves. The 11am meeting time meant that we were home in time for an afternoon nap.

Em gave us an update on her numerous appointments in London with Dr Giunti, Physio's and OT etc as part of the research trials in which she is taking part. She has been prescribed Co-Q10. Em says she has had found no improvement so far but they did tell her that it could take a year to feel any benefit. The next stage will be to arrange for her to have consultations with physio and OT in Colchester. This will be a great improvement on travelling to London.

Gareth [from Doncaster] has now been transferred to Neurologist and support staff at Colchester Hospital and Jason also attends Colchester Hospital. Colin attends Ipswich Hospital. From what Colin tells me, Colchester sounds better equipped for ataxia. Colin has now been referred to an MS clinic, that being the nearest to his condition. Shirley is undergoing
tests at Queens hospital Romford with Dr. De. Silva and I go to Dr Giunti in London. We discussed the tests we had undergone and although no benefits have been personally felt, it will benefit future generations.

Shirley and Ron showed their recently awarded certificate for dancing – they have qualified in The Waltz. They were have greatly enjoyed this experience and highly recommend it. Shirley is not able to walk unaided so this really is a great achievement and a credit to Ron's caring support.

Ron has encouraged me to make our Awareness Day more publicly open and we discussed how this can be done. Ron had already invited us to share his wine and the day for this agreed as Saturday 13^th July from 11am. I have booked the Orangery here at Abberton Grange for that. I have now discovered that Abberton Manor are having their summer fete on this day so am endeavouring to book a stall for the day. This will mean that some of us can run an Ataxia Awareness stall at the fete whilst others can relax in the orangery. Ron is donating wine and a couple of watches for a raffle any other items will be welcome. Last year the fete was very well attended and hopefully we will have good turnout again this year. This event will replace our annual wheely wobbly walk. See below for list of dates.

Please make a note in your diary for Saturday 13^th July and I will confirm when I have heard that the stall has been booked. Postcode for Abberton Grange is CO5 7NL.

Sadly, Sheila has broken her leg again – this time with full length cast and unable to fit into the car. We wish you well Sheila. Sheila and Dave now have new grandchild so hopefully that will be a nice distraction. Sheila writes:

I will be unable to make the meeting on Saturday as I have had another fall and broken my leg again. The same leg but higher up so it needed a full length plaster. As I can’t bend the knee it makes getting in and out the car tiring, I only did it Thursday it meant a small operation to manipulate it,came out Sunday. In the meantime Lorna had another girl Isla Ann 9lb 9oz so I did`nt get to see her until 3 days old,so I now less cuddles than Dave!

Apologies received from Baz who went to Twickenham to see Army v Navy rugby match. I see on facebook, that he had brilliant day and the Army won. Beatrice phoned for chat and sends her good wishes. Do feel free to phone Beatrice, she does like to keep in touch. Linda Salter, Suzzy [hope your back is feeling better], Jenny and Brian [on holidays], all sent good wishes.

My good wishes to you all, stay safe, Patsy

Date of next meetings

IPSWICH SATURDAY 25^th MAY

COLCHESTER SATURDAY 22^ndJUNE

ABBERTON GRANGE SATURDAY 13^th JULY - FETE

IPSWICH SATURDAY 27^th JULY

COLCHESTER SATURDAY 31^st AUGUST

IPSWICH SATURDAY 28^th SEPTEMBER

COLCHESTER SATURDAY 26^th OCTOBER

SATURDAY 30TH NOVEMBER ?? xmas lunch

Next event: IPSWICH 25TH MAY- HOLIDAY INN from 11am