Personal alarms

[Amynah]

I wanted to know if any of you are using personal alarms. I have been advised by the social services that I should have one, do people with ataxia SCA1 use personal alarms? Thanks for all your help.

[Litty]

I have SCA1 and an alarm run by a local Telecom company. I wear it on a lanyard. If I am in trouble and press it it sends an SOS to their 24/7 helpline. They try to talk to me via the alarm but know because I have ataxia they may not understand me, so next try my emergency contacts.

When i was active it had a GPs signal so you could see where I was x

[Amynah in reply to Litty]

Its the first time I have met SCA1 online. Thanks for responding to me.

I would like to how ataxia progressed with you. Last Thursday I could not walk - put weight on my legs nd dragged my feet with walker. Over the weekend I started lifting my legs but keep getting jerks on my knees and ankles - you are saying you are less mobile now - what does that mean, please enlighten me.

[Litty in reply to Litty]

Hello there I will tell my progress but even in our family it varies so much and is so individual. I try to do what I can for as I can. I have eye trouble (light sensitivity), annoying shake or bad circulation (often need windows open and cool błocks) and I have dyphagia.

I exercise as much as I can. I use a walker but my balance is not good.x

[Amynah in reply to Litty]

Thanks for your help Litty, I was inundated with appointments and pip review so didn't reply. Thanks for responding, I will just have to play by ear and see what happens. Take care

[lorrainewalls]

Hi Amynah

I was advised by an occupational therapist when I moved house to have one installed. They work via the phone line. I had never thought about it before but since having had several mini strokes around Christmas time when I was away from home with family, I think it is invaluable, especially if like me, you live on your own. You may never need to use the service but it gives you peace of mind that help is quickly available 24/7. You can get an "Lifeline Alarm" privately but I am told it can be expensive so if you have been advised to have one by Social Services, don't hesitate. You may be asked to contribute depending on your means but even though I am not entitled to financial assistance, it is only a few pounds a week. I would add that my lifeline alarm is checked and serviced every 12 months, free of charge. I hope this is helpful.

[Amynah in reply to lorrainewalls]

Thanks for your reply - I do live alone - and will for it - the SS have two version one £18 - phone call and then visit. £33 - rush to visit. Do you have a key safe?

[lorrainewalls in reply to Amynah]

Hi Amynah

Yes, I did buy a key safe but it hasn't been installed yet. I think a gentle reminder might be in order - unfortunately family have different priorities.