speed of deline

[sylviagreenhalgh]

I have late onset cerebellar ataxia and I have noticed a rapid decline in the last 2 months. my walking is really hard now, I feel very weak, everything is a terrible effort and the house is a mess because I get so tired. I live on my own so I cannot blame anyone else for the mess, but I start doing some clearing up and after about 15 minutes I feel exhausted and have to sit down.do other people find that they go in steps or is it a gentle decline? My swallowing is a real problem too and the Speech and language therapist gives me a lot of advice. I am OK in myself but I worry about how I will manage as I get worse. Does everyone feel increasingly tired ?

[Jenny789]

I recognise many of these symptoms. In fact, I fell out of bed this morning. I too live on my own and had to shuffle on my bottom to the lounge where I can push myself up to standing from a certain chair. I have tried all different ways of standing and apart from this way - all fail.

As I tell myself - chin up. Sometimes it helps sometimes it doesn't.

[sylviagreenhalgh in reply to Jenny789]

thanks for this. My daughter says all I do is moan - she does not come very often and only for a short while . She says she will not help me as she reads her teenage diaries and says how awful I was to her- she s nearly 50 now on her own, never had a boyfriend and after my husband died I was with someone for 21 years when he dumped me because of the ataxia and she did not like him. I have 3 sons who are very supportive but they have their own lives.they think their sister has problems. I am OK generally in myself and am not sorry for my self- just get on with it. the hospital doctors make it worse- the neuro guy is lovely but others say things like are you incontinent yet? have you thought about the care you will need once you cannot do anything for yourself ? etc I am still driving short distances and waiting to hear from DVLA if they will allow me to keep my licence. I was always so active it is hard to make the adjustment.I am lucky in that I have a disabled centre nearby that I can go to but it is the effort of getting there.have you thought about getting a chair that tips you out ? have you had advice from an occupational therapist - they may be able to loan you a more suitable chair. I find the OT very helpful putting in hand rails etc why not contact your local adult social services dept and ask for an OT assessment.all the best nd keep smiling !

[Jenny789 in reply to sylviagreenhalgh]

I don't feel this is moaning. It just shows how frustrating life can be with Ataxia and our lack of ability to do things.

[tino1234]

hi yes I do I am only 39 had the symptom's for a few years but only got diagnosed 4 to 5 months ago and I struggling to walk a bit now I get so tired especially at about 6 pm I am in bed at 7 30 I get very weak a lot to but my wife helps with most chores I am lucky in that respect but if you are on your own you should speak to your gp to get some advice tell them you are finding it difficult and its your right to get the help you need I know its hard even with my wife and family's help I don't know how I would cope on my own anyway keep strong

[sylviagreenhalgh in reply to tino1234]

thanks for taking the time to reply . the exhaustion is the worst thing as I was always very active. HAVE YOU contacted the local adult social services dept to ask for an OT ( occupational therapist ) assessment - they have put in rails and all sorts of handles and other things that help me. I have a lovely home help who lives down the road and I can always count on her to help. keep smiling!!

[tobytots]

HAVE YOU HAD AN ASSESSMENT OF YOUR NEEDS, IF YOU ARE STRUGGLING IN THE HOUSE RING SOCIAL CARE DIRECT AND ASK FOR AN ASSESSMENT, THEY MAY BE ABLE TO PUT A CARE PACKAGE IN PLACE TO HELP YOU, SPEAK TO YOUR GP AS WELL AND LET HIM KNOW YOU ARE STRUGGLING, IF YOU HAVE NOT ALREADY GOT ANY FINANCIAL HELP SUCH AS PIP CONTACT CITIZINS ADVICE SERVICE WHO CAN ADVISE AND HELP YOU WITH FORMS AND WHAT YOU CAN CLAIM AND MAYBE LOOK AT GETTING SOMEONE IN TO HELP YOU WITH THE CLEANING.

FROM EXPERIENCE HAVE FOUND IF YOU DONT ASK FOR SOMETHING YOU DONT GET, SO DONT BE AFRAID TO ASK FOR HELP AS ANYTHING THAT CAN MAKE LIFE THAT BIT EASIER FOR YOU MUST BE WORTH IT.

[sylviagreenhalgh in reply to tobytots]

thanks for taking the time to reply. yes I have a home help who will do anything I need- I have a private arrangement with her. The OT has been and they fixed a load of hand rails etc which make life easier. It is the exhaustion I have that is the worst thing to deal with and I feel I have got a lot worse in the last 2 months- walking even with a mobility walker is really hard now so I am being assessed for a wheelchair later this month. the exhaustion is the worst thing . keep smiling !!

[wobblybee]

Yesterday I went somewhere totally unfamiliar, and it completely exhausted me. It was an outdoor event and although I had my rollator it didn't give me total confidence. The ground was tarmaced but uneven, there were a lot of people milling around and lots to look at, a recipe for disaster really 😏

I cope much better if I stick to places I know well, but that doesn't help broaden my horizons. But the unfamiliar stresses me, it requires so much more concentration, too much multitasking.

Personally, I find it harder to keep order at home now, I end up with various piles of stuff that needs sorting. That in itself comes under the heading of multitasking, it means I have to concentrate extra hard and make decisions, this is becoming harder and often simply ignored.

On a 'good day' I can be firm with myself and methodically tackle one task at a time.

Fingers crossed for tomorrow😊xB

[sylviagreenhalgh in reply to wobblybee]

yes it is the same for me with piles of papers around to sort out- perhaps I should chuck everything out and start afresh- dreading doing the tax return - I used to write text books so there is a lot to throw out- trouble is that only I know what is worth keeping and what I need to throw and it is exhausting. I want to enjoy life rather than struggle every day. a friend had a lot of stuff in her house and could not chuck it so in the end her son and a friend came with bin bags and threw it all out ! that is one solution I suppose but rather drastic ! keep smiling ! but what a pain it all is. My legs and arms are like sticks- I joined a disabled gym but IT is such an effort to get there so I just do the exercise class once a week but that is not enough to keep me going. am OK in myself but I find other people s comments are hard to take as they don't realise what a struggle it is everyday.al least today the sun is shining !!

[wobblybee in reply to sylviagreenhalgh]

You used to write text books, these and instruction manuals send me into a proper tizz! I can't bear to get to grips with receipts and statements these days 😏 If I had a skip outside and could just throw stuff in without deciding where to pass it onto, that would be so theraputic😊 but at the same time I wouldn't like someone else to just declutter for me, they might throw something useful out😉

Although I'm well aware of the need and benefit of exercise, I fail to follow this up as a specific regime. If I have the energy ( and can bend without falling over) I prefer to attempt some gardening ( tightening my muscles as I bend/ holding my tummy in!). I tried Pilates but felt like a dead weight when doing floor exercises and had difficulty getting back up. Oh, the joys of this thing Ataxia! xB

[silkwood]

Don't worry about housework.I can't do anything now.

You(and I) are trying to live a normal/old standards life with a damaged bit of brain.No wonder you are tired,I was very active until about 6years ago.You are trying to do the impossible sylviagreen.Be kinder to yourself.I am talking to myself too as this is my problem aswell.I have had a great time with Ataxia and it is only the last few months I have frustrated.

[sylviagreenhalgh in reply to silkwood]

thanks for reply- a cousin came to visit me when she heard I had the ataxia we were indoors all the time sitting talking so she left and sent an email saying I seemed fine and had few problems.she is a nurse and cannot understand so perhaps you choose who you see more carefully !look after yourself love Sylviaxx

[LBenyon]

hi my name is Lorraine and 61yrs old I have the CA i also have my tired days,the desease was a very slow progression, but now my walking is terrible.my balance has gone out the window.my speech has good days and days were people cannot understand me!!! I know in time I will get worse but I do not think of them days as I live on my own(divorced) I do what I can and on my so called bad days I just lounge around haha thinking of all the things I should be doing,but there always there so I do them when I feel ok as there is nothing I can do about my A CA,i also have rheumatoid arthrist which dos not help .I am now getting the help of a pyhsio to strengthen my leg muscles so I can only hope that helps. Good luck and chin up!! Lorraine

[february]

Dear Sylviagreenhalgh, I have late-onset Sporadic Cerebellar Ataxia (unknown cause/symptoms 24/7). I'm 61 years young, diagnosed eleven years ago, although I started having very minor symptoms about eight years before diagnosis (when I was 43). I started using a cane when I leave my home about five years ago, after a bad fall, but am still able to walk "extremely carefully" in my home without it. My ataxia has progressed over the years, hence the falling. I try to stay as active as I can, taking frequent pleasure walks outside with my Access Active Rollator. I'm doing physical therapy every two weeks with "homework" in between. I'm also trying to keep my muscles as strong as possible, especially in my legs. I belong to a wellness center and use a NuStep machine (you sit and push pedals, as well as hold onto arms that move-you set the intensity). I also try to use some of the weight machines. I get tired easily, and sit and rest several times a day. I also find it easier to break up things I need to do in very small increments. Ataxia is very frustrating and challenging, as you know! We have to work so hard at everything we do! Hence, no wonder we get tired fast! ;o)

[silkwood]

Sylvia....

My shrink told me today to do nice things but after a lifetime of deadlines I still feel guilty.I need a personality transplant.

[Vion]

Hi, you are not alone, I have not been properly diagnosed yet but feel very tired after doing 1/2 things. I now have a mindset to do one job each day and forget the rest until tomorrow. Today I am going to attempt to hoover after that I will just rest for 20 mins then, if I have energy I will tackle another job. It's important to keep active but have rest breaks. I am not having swallowing problems, but vision is getting worse. Still trying to understand what is happening but you are not alone when it comes to this. Keep strong. My old dad used to say dirt only kills you if it falls on top of you, so don't worry about mess.😂

[sylviagreenhalgh]

thanks for this. am getting in a panic re tax return and in the last weeks I have been rushed up to A and E a few times as I had severe abdominal pain- they say I need an op to remove my gall bladder so I cannot think about anything until that is done- never rains but it pours!!keep going nd smiling !! all the best Sylviaxx