Dear Anna29, I do not have rubella, but do have ataxia. I am sorry you have this to deal with! My theory is, we get so tired as we have to really use our muscles just to hold ourselves up and do anything at all. It takes more energy, hence the tiredness! My muscles are always so tight and stiff. If you have muscle wasting, it's even MORE tiring for you! I hope you hear from others with rubella and ataxia! My best to you..., ;o)
Hi Again Anna, Yes, my neurologist has always told me to use it or lose it. Therefore, I try to stay as active as possible, although I'm not dealing with rubella like you are. You must rest to have any energy at all, so I wouldn't feel bad about that! I just have ataxia and rest frequently too! For instance, I'll do something and then rest a bit, etc. I was diagnosed with my ataxia eleven years ago, and it has progressed over the years (symptoms have gotten worse). Therefore, I try to exercise for strength and balance. I hope you find an expert doctor in the UK for your rubella! I live in the US, in the State of Michigan. Hugs..., ;o)
I dont have all that problems that you have but I have Ataxia.
I have been diagnosed with progressive cerebellar ataxia of unknown cause for nearly two years now. Im 47.
My symptoms are still mild just now but will get worse over time. I am very unsteady when I walk but don't use a stick, Something I'm going to need to use sooner rather than later, putting off using one for as long as possible. I cant walk to far without feeling tired my legs get stiff and heavy which slows me down.
I get tired a lot, even when I don't do much, I do have an afternoon sleep when I can. I have a few falls indoors more, but outside as well,
something I will have to get use to. Nothing more serious than being battered and bruised afterwards.
hi babygirl 123 this sounds so much like me been newly diagnosed with cerebellar ataxia am 38years old and coming to terms with the symptons that this condition brings.....frustrated and scared x
Dear Anna, I had rubella when I was 12 years old. I developed encephalities. Here in the USA that was supposed to be an automatic sentence to an institution. But my Mom and Dad would have nothing of that. I developed epilepsy from this. I have also dealt with ataxia although much milder than yours. Now that I am 70 years old my doctors are simply unfamiliar with rubella before we had vaccines. It is amazing how many stereotypes there are about my disabilities here in the USA. I took this as a challenge and started a center to help persons with ataxia similar to yours and to mine. I will be teaching how to use music to help some of your struggles. I am new to this page so I do not know if I can mention the center I just started or not. I will be getting my tax-exempt status in the USA in about 4 months. Anyway Let me know Anna if you would be interest in how I use music for rubella related ataxia and I will sure share what I do. Basically, I use music rhythm to help me coordinate my muscle movements. I also use playing the piano to help me with spatial issues like not being able to put a fork to my mouth when eating. Anyway I will share more later---but sure will be thinking about you Anna 29 and the rest of you. _I just now saw your post was 3 years ago. Have a great day
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ataxia and Driving
Cerebellar Ataxia and eye problems
Why am I a part of the Ataxia UK community?
Dudley & Wolverhampton Ataxia Support Group
Have you joined an Ataxia UK branch or a support group in your area?If there isn't one would you like to help me set one up?
