Ataxia UK

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Gateshead/Newcastle Ataxia Support Group

3 years ago•21 Replies

Apologies for short notice but, if anyone would like to join us we're meeting at the Holiday Inn, Seaton Burn on Tuesday 18 April at 11am🙂xB

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Ataxia

21 Replies

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in reply to DeniseLB

2 years ago

Hi Denise😊

Don't give it a second thought, we all have a time when 'enough is enough' and something has to give, including me😉

Well, since we last corresponded I've been lucky to have a lovely holiday in the sun😎 And, managed to include attending the National Ataxia Foundation Convention in San Antonio😊 I was very disappointed when I saw where the Alamo was. The city has grown up around it and the Alamo is surrounded by shops and traffic😳 But once inside the building we're all familiar with, I did think it retained an 'atmosphere'. Cameras were forbidden, and even touching the walls was frowned upon.

The overall journey nearly finished me off, trains and planes🙄 But, it was well worth the effort😊 and I have survived😉

Today, we're enjoying beautiful sunshine😎 I've been pottering in the garden but staying well away from the rockery😑 A few weeks ago I became over confident snipping ivy and fell off the rockery🙄

Like most other people, once I'm down I have difficulty getting back up🙄 My husband heard the noise and came out to haul me up. It was so embarrassing, I've put so much weight on, it caused him to overbalance and we both fell over😂 xB

in reply to wobblybee

2 years ago

Hi Beryl,

It is really nice to hear from you and I am glad you had a great holiday.

Totally understand how hard trains are but hope you got help on the plane.

The sun must of helped greatly though, we have gone into a really cold snap here where temps are only getting up to 12 degrees! It is probably part of the reason I've been on a bit of a downer as the cold just turns everything to hell. I've also been put onto Gabapentin, which I'm told is meant to help with the pain. It just makes me dizzy I even managed to fall over my own feet!

Being alone at the time I just sat on the floor for half an hour as it just seemed like too much effort to get up.

I am also fed up as I have put on weight although I still exercise as much as I can, although they said on the tv we are meant to do 150 minutes per week I might be up to 40!

I am smiling now, but just a bit of sunshine would make all the difference!

Oh by the way I hope you and your husband laughed about it!!

As there is nothing else we can do.

Denise xxx

in reply to DeniseLB

2 years ago

I don't do a specific type of exercise, just potter in the garden😉 From experience I've realised it's much better to clear away and tidy up, long before the effort is just too much, and exhaustion takes over from common sense🙄 So, I'd gritted my teeth, had a shower and washed my hair, and then had to see to the cat. I glanced out of a window and saw something large flapping about near a Moorhen nest. Without thinking, without my glasses, and just wrapped in a bath towel, I staggered up the lawn clapping my hands. I thought I'd seen a Heron attacking the nest. It turned out to be a hanging branch and a Moorhen parent😂

Today, I went with my husband and daughter to a 'taster' class in Ring Making. I'd looked online and was aware of the basic steps but it turned out to involve a lot more physical effort than I imagined😳 It seemed a good idea to let my husband be in charge of the soldering iron😉 But I excelled at the polishing😉

I had a bag of donations for charity, and found a local shop that would be open today. My husband hauled the stuff inside, it included a 'knockoff' designer hand bag. He was told they weren't taking any more donations at present because they were stowed off🤐

BTW, for me yesterday was **** Hope you're feeling much better😊xB

in reply to Dishy

2 years ago

Hi Pat😊

🙂 you both need support. As a starting point, have a look on AtaxiaUK website for a Support Group in your area🙂 Not only would this be an opening for your husband to vent his frustration, it would put you in contact with other caregivers who are likely to be in a similar situation. If you're unable to travel to the meetings, ask the contact person for help in being put in touch with another caregiver🙂 Even being able to speak on the phone to someone who can empathise will help🙂 Support Groups are also a good way of passing on useful information as to what help is available via the NHS in your area.

Your GP may be able to refer you to an Ataxia Centre, where they have access to a multi discipline team of specialists. Usually, there's a specialised Ataxia Nurse contactable by phone🙂

I've had conversations myself with others who struggle to make themselves understood, I know there comes a point where this gets beyond slurring words😏 At some point your husband may be referred to a Speech Therapist. There's useful advice on controlling breathing, and if there are swallowing issues a Speech Therapist can be helpful.

Please don't feel alone, either of you. Definitely contact your nearest Ataxia Support Group🙂 Just actually being able to speak to someone who totally understands can make so much difference 😊xBeryl

in reply to wobblybee

2 years ago

I do the clear up and tidy up all the time, I am actually feeling a lot better as I came off the drugs a couple of day ago and feel more like myself, warts and all!

We did the charity shop thing and John didn't tell me at the time that they didn't accept anything, but he did when he gave me £50 after selling the stuff on ebay!

Anyone want 80 pairs of shoes?

I could open a shop! I feel pretty angry with myself as I didn't make my doc's appointment, I worked out that I had hardly walked anywhere in the last two weeks so I do feel I made the right call, I have looked into places to meet up with people here, but it will cost me £50.00 in cab fares here and back so its a no go at the moment.

You might think it is great to have a London post code and it is if there is nothing wrong with you, but hell if there is ................

I complained about the DWP and they told me after telling me that this is the people I need to complain to that I complained to the wrong people, they then told me to complain to the people that I had just complaint too, they then told me that if I heard nothing by 12th june I can then complain to them again and they might be able to do something!

Sorry about the spelling but trying to make this sound wright almost means you have to type it all again.

tip of the day, if you have ivy growing in your garden get rid of it before you try and do that on your own and fall over at least 7 times!

Oh and painting garden furniture is another problem.

I am sure there must be at least something positive out of this?

Anyone want any shoes?

Oh it seems I do make great cakes.

Denise xxx

in reply to DeniseLB

2 years ago

🙂 Don't ever apologise to me about spelling😉 My iPad is driving me mad, I think it's something to do with predictive text. I spend more time deleting and correcting, sometimes I wonder if it is the iPad, or Ataxia😉

I've just made a cake😋 Yesterday, I had a craving for Lemon Polenta Cake. I knew there was a tub of puréed lemons somewhere in the freezer. So, I'm all set, then I realise not enough eggs🙄 But, it's out of the oven now, can't wait😋

I did actually think things might be easier, and you would have access to all sorts living near a major city. But, it's pot luck really😏 Sometimes there's no end of needless frustration 😑

I bet I could compete with the shoes😉 My daughter still stores stuff with us, she was going to put things on eBay but that never materialised 🙄 A lot of her clothes and shoes were from Karen Millen, they'd probably be considered vintage now. I live in hope😉xB

in reply to wobblybee

2 years ago

My pot seems to be quite black, can I have some cake please! My mum had a fall last Saturday and once upon a time I would have been the first there, but I am deemed useless to my brother and sister. She has broken her right shoulder bone, left leg and a hip bone and was in surgery for 6 hours. This has all come out over a number of many hours and days of course my brother and sister have fallen out as they tend to do so I like my mum probably are just a square peg in round hole.

I am glad you realised that living near but too far from a major city is not always so good.

I am not quite sure if my being able to walk to a local shop will get me the 210 miles I want to travel at the moment.

I know I can hear you say, another downer, I promise you not, just frustrated, me and my mum together are just like best mates and we always laugh, the other two! Very serious, my sister told me a year ago "You can not possibly stay in your house, you have stairs!!!!!!!!"

Still here. I try and make a point not to fall down them.

I wasn't ever going to tell my sister that I can get up them faster than her!

I am cooking cup cakes tomorrow with the hope that my sister will put some positive thinking into play and get me to Wales, shouldn't mention it but she has more money than me. Actually I think most people do.

Sorry, I will do better next time.

Denise xxx

in reply to wobblybee

2 years ago

Hi Beryl, yes cup cakes very good, but my hope of my sister getting me to Wales fell flat so I have frozen them instead. I am sorry everything flared up for you, I know exactly what that is like.

Not quite sure about a recipe that is fat or flourless! You might as well just eat an orange. I've tried a few things as my sister is vegan and my brother is veggie! Not everything quite went to plan although I did find a bit of wall that needed re-plastering. I didn't quite go that far.

Dementia has only appeared once in my family so far and it was an Aunt and not until she was in her 80's it broke all our hearts.

My mum is still stuck in hospital and because a care system needs to be set up for her, she will be stuck there for another week, after speaking to her last night I know how hard she will take that. My sister has opted for a doctor to tell her rather than herself!! Not happy about that.

My fight continues with the DWP as being the 31st May it looks like I will not get my home visit this month. Put in yet another complaint, for what it's worth. With parliament dissolved at the moment I can't even look to my local MP for help and not sure who that will become 8th June.

Anyway we need to fight on! At least I keep telling myself that.

Really though, why no flour or fat?

Denise xxx

in reply to DeniseLB

2 years ago

Hi Denise😊 Well😑 Just back from the Health Centre. They've changed the routine, you have to have an appointment for a blood test before re issue of a prescription. And, then another appointment a week later for the actual medication🤐 Beautiful weather here but I'm now hot and bothered😑 Re the cake😋 It's a recipe I found in the Sunday Times Magazine, Orange and Almond Teacake. I'm trying to reduce my intake of Gluten and yeast, having previously being diagnosed with Candidiasis (google it😉). The symptoms can be very similar to those of ataxia, even Neurological😏 Due to my recent flare up, I thought I'd give it another go🤔 The recipe only has 5 main ingredients, 2 sml oranges-185gm golden caster sugar ( which I shouldn't have because of Candida) - 4 lge eggs - 185gm ground almonds - 3/4 teaspoon baking powder (I don't have GF so have to use bicarbonate of soda + cream of tarter🙄 Nearly all my recipes end up being adapted in some way😂 So, I've boiled the orange (large, I don't have sml ) and am just about to bake. I'll let you know how it turns out😋xB

in reply to wobblybee

2 years ago

Hi Beryl,

I am going to say that one of the reasons that I like talking to you is the fact that it is now just a way of life and you have to get on with it, before writing this I did google your other condition and I am sorry, I suffer with sinus problems that also makes things worse. How many things can they throw at us!

I am glad the cake was good and I might even try it myself. Oh maybe minus the almonds as they make me sick!

My mum got out of hospital today and I got a call from the DWP to say I have a home visit on 14th June, of course nothing in writing yet, but knowing my luck they will stick me on job seekers and try and send me back to work. If it were that easy I would have done it by now.

My friend at least comes home tomorrow so I can at least annoy someone else.

The funny part is I sent the most sarcastic complaint to the DWP and I mean bad, given the fact that I had only spoken to the customer relations team yesterday they said I had no hope of any visit for at least 6 months. If only I had been so bad before!

Oh well we live and learn, I look forward to talking again.

Denise xxx

in reply to DeniseLB

2 years ago

Hi Denise😊 I almost kicked off today, you are not alone😉 My health centre has a new ruling, no repeat prescriptions issued without having had a blood test. It's bucketing down here, the pitifully small car park was full except for Blue Badge parking👍 I hope your mother is on the mend🙂 My daughter had experience of 'job seekers allowance' etc when she came back home after living in London. She was obliged to sign on at an office difficult to get to unless by car🙄 Stay cool, calm and collected during your home visit👍Many moons ago, in my teens, I walked out of one job and into another, they were 2 a penny😏and of course I wasn't coping with debilitating symptoms then. I haven't worked for over 20yrs, lucky for me I was employed by my husband. But even so, I went before I was pushed. Multitasking, sensory overload, eye problems- I was becoming more of a liability. If you are required to 'be available for work' make it plain that your symptoms can be erratic and debilitating but I'm sure you're up to speed anyway🙂 This time last week I was almost passing out with heat😳 I never thought the weather could be so changeable at this time of year. I went to Waitrose before the health centre, trying to multitask carrying a bag, umbrella, and using a walking stick was almost beyond me. When I reached the car and had to look for keys😑🤐 Send me some sunshine😉xB

in reply to wobblybee

2 years ago

well I am sending you some sun now, we are all meant to be getting it. But mine is on it's way to you anyway.

I can't pretend that I am not scared about my visit and my best friend will be here to hold my hand so I tell myself I should not worry.

It is funny thinking back when you look at things before I started to lose feeling I was suffering.

This might sound terrible but I really hate doctors and having anything to do with them. I have had to deal with three misdiagnosis in my life one cost me a baby, another an ovary oh and then the other one shortly followed by my womb and this one my life! I was signed off with depression back in August 2015 because I had no feeling in my feet. My current GP even said it was a shame I had not come forward before!!!!!!!!

If this assessment does go in my favour it will at least give me a chance to have a life again.

Here is a new one for me to deal with, it seems my best friend who is also my ex doesn't necessarily want to be my ex anymore!

No idea how to deal with that one now.

I quite like the idea of running away its just running is not my thing anymore!

Anyway my plan b is I will dare them to find me a job.

I will let you know how I get on and look forward to talking again.

Denise xxx

in reply to DeniseLB

2 years ago

Here comes the sun👍😎 I pottered in the garden on Friday, and ended up with my usual midgie bites😥🤐 Antihistamine tablets send me to sleep😑I have awful scars due to scratching. Witch hazel helps a bit😏 It's so frustrating🙄

I'm trying an increase in Sertraline, from 50mg to 100mg. Depression isn't too bad but I just wish I didn't constantly think about SCA🙄 I'd much prefer to dwell on something else😉

So, big changes afoot re your 'friend'🤔 You've got a lot to think about🙂

Believe me, you're not the only one who'd opt for running away😂 Actually, when I could run, it was the last thing I wanted to do🙄

This morning I finally forced myself to ring a Hairdresser😏 I've only had my hair cut once since it grew back, I hate going😑 The bright lights, music, leaning back over a sink 🤐 But, It's either that, or I'll cut it myself. The frizzy ends are driving me mad🤐

Good luck for tomorrow👍 Stay cool 👍 😊xB

2 years ago

Hi B,

I don't think it went very well as all he did was shoot questions at me and then point out that I had contradicted myself! I did try and explain to him, I live across the road to a wide open common and I can walk father on grass than I can walking down the street. He did note that I did not walk quite normally, but it all felt a bit strange.

If I do get any money a hairdresser is on my list as I have been cutting my own for nearly two years now, mine pretty much fell out nearly all of it, very happy that most of it grew back.

I really don't know what to do about John, I just want to be myself for a while with the benefits I am told I am meant to have.

So please go to the hairdresser and just tell them to make you drop dead gorgeous.

I was asked about depression and I did tell him straight that most of mine over the last 18 months has been caused by the way I was treated by the DWP.

But on the upside great sunshine that is meant to last for at least 3 days.

Hope to talk again soon and I will let you know when I hear something, if nothing else I will get a pretty good tan!

Denise xxx

2 years ago

Well, yesterday I bit the bullet and had my hair cut🏅 I was dreading having it washed, leaning back brings on vertigo😑 I had the option of (a) a tilting sink or (b) a padded bed😳 ( new, from Paris😳) I opted for the bed, next time I'll stick with the sink. Vertigo was just as bad😏

Yesterday the humidity was horrendous🤐, 29C here on the NE coast🤐 It made me so drained I couldn't even sit out in the shade😓 Today it's at least 10 degrees cooler, the sky has just cleared and the sun is out🙂

Yesterday I had a call from the Care Home, my Uncle's toe had fallen off😳 While I struggled for words, the nurse said 'oh, I meant his toenail😂'.

Today, I've broken the fly swat, where do they all come from😡 I swatted one above the hob and thought I'd I'd missed it🙄 But I found it in the pan of mince🤐xB

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