Husband had a bleed on the brain - as a family we are all finding it difficult

sudilan

Hi my name us Sue.My husband had a bleed on the brain a year ago he spent 10 months in hospital.He has a brain injury, ataxia, no short term memory and poor mobility.He can walk with a frame and assistance.He has 24 hourcare at home.He is 61 as a family we are all finding the adjustments and lifestyle change really difficult.Any advice would be welcome.

Sam_Alumni

Welcome to the community @sudilan and thanks for being here.

It must be really hard to deal with the sudden change in your lives, are you getting any support as a family? 

I moved your post to the Carers group and I hope others will be able to share their experiences.

Chris_Alumni

Hi @sudilan, Female Gadget Geek, via Twitter, says, "Don't panic, it's a steep learning curve but you can manage it."

shelby1066

You need to claim pip. Cares allowance as well blue badge and radar key. Get occupational therapist from Gp to access your home to see what support they can offer. 

GeoffBosworth195661

[email protected], Yes Ataxia is one area that I specialise into and I understand the brain bled of which 10 months in hospital. Let me give you a good advice if you live close to Newcastle, Sheffield or Oxford then you can ask your GP to make appointment to see one of three best in the country that specialise and have there own research centres and pick up things that are most common that neurologist have not the full expertise but can locate and tell you have got ataxia, You have not said what group scat he has. And what type of ataxia diagnoses your husband as got. ATAXIA UK to get registered first. You need social services to give assessment of when the condition is becoming worse. You have not said if he's taking medication if so it will stall the condition it will not get worse or will not improve. This is why it is vital you see the right ataxia support around your husband. Your husband with how you are saying is called gait that is uncontrolled walking. Most common legs are apart more while walking or the one to look out for is side walking that is the tumbling one of which eventually end up with a wheelchair. Try keep the room clear as obstacles can cause lots of falls no matter what he has got. If you need any other information just ask hope everything goes on ok. Your GP should have a procedure manual as well as neurology as social services this again is lack of knowledge. You should have had also a manual if not Ataxia UK when register will send you one. Keep safe.    

sudilan

My husband is taking madapar for Cerebella ataxia. He has an appointment at the Queen Elizabeth hospital Birmingham with Prof Belli in traumatic brain injury clinic hope to learn more tomorrow.Thankyou for responding to my post.

GeoffBosworth195661

Hi @sudilan Cerebella is common you need to know the type scat number if you can find the number he will have to take medication to stall. I have heard of Professor Bellini at least your husband is seeing a professor that is the procedure that a lot of Dr and Neurologist miss out on. Good luck to your husband He either has had MRI which he should have had before seeing  Professor Bellini this speeds up things. Good facilities at Queens Elizabeth Birmingham. 

Sam_Alumni

Hi @sudilan how are you all getting on?

sudilan

We are doing ok. We have booked a family holiday with disabled access holidays. We all need a break as Paul spent ten months in hospital and most of his days sat in a chair. We all need time to get used a new lifestyle.
Thanks