Hiya, My niece is 15 years old and was diagnosed with friedreich's ataxia just over a year ago and shes been suffering with a really weak bladder. does anyone else with FA suffer with the same thing? Many Thanks.
Selina xx
I think you might look on net and see if there are some abdominal exercised that might help strengthen muscles in the area. Just a thought.
Hi Selena, my daughter has the opposite difficulty of knowing she needs to pass urine but not being able to go when she gets there. I know it is common for people with many forms of Ataxia to have difficulties with bowel and bladder. My daughter has been referred to a continence clinic who can apparently help and also she is due to see her Neurologist in a few weeks. I would suggest that you ask to see a Neurologist or for a referral to a continence clinic to see if they can help her.
Best Wishes
April
I am 57, have had ataxia for 10 yrs, recently had a bladder pacemaker put in; after trying pills, patches, exercises for incontinence. I have more control over my bladder - has helped at least 65%. the item name is Interstem, ask continence/urologist about this.
It's good to hear it is a common thing, I would be interested to hear the result of your daughters referral.
April Austen said:
Hi Selena, my daughter has the opposite difficulty of knowing she needs to pass urine but not being able to go when she gets there. I know it is common for people with many forms of Ataxia to have difficulties with bowel and bladder. My daughter has been referred to a continence clinic who can apparently help and also she is due to see her Neurologist in a few weeks. I would suggest that you ask to see a Neurologist or for a referral to a continence clinic to see if they can help her.
Best Wishes
April
Hi again Selena, I will post on here when I hear more about her referral.
April
Thankyou for this Faye, I will post as to what they do for my daughter. I'm pleased to hear you have had some help for this problem.
Best Wishes
April
Faye Mays said:
I am 57, have had ataxia for 10 yrs, recently had a bladder pacemaker put in; after trying pills, patches, exercises for incontinence. I have more control over my bladder - has helped at least 65%. the item name is Interstem, ask continence/urologist about this.
I have been wondering if constipation is common with Ataxia. About the time my Ataxia got really worse and I lost ability to write I also got chronically constipated. PCP only addressed it recently and suggested stool softener/laxative. That is the only solution now. Sometimes have to rush to urinate or don't make it in time, other times wait and wait when I know I have to go but don't know how much is due to Ataxia and how much due to age and fallen bladder. Have heard/read that incontinence goes with ataxia but so do other things that so far I haven't experienced. At one time, long ago-pre-ataxia- a doctor had me do Kegler exercises to strengthen bladder. I am a believer in exerercise.
Thank you all, Yeah April please keep us upto date. xx
Check out the InTone devise. It trains the pelvic floor and is monitored by your doctor. It is like at home Physical therapy
Hi again, I know that Ataxia can cause bladder and bowel problems and think that these problems can be either difficulty with urinating and bowel movements and also the opposite of constipation and urine retention.
I think with my daughter the problem is due to the messages from her brain being so slow and abnormal according to the nerve conduction studies that although she feels the need to wee the messages don't get through correctly leading to her often not being able to urinate. Fortunately it isn't too bad yet and she does eventually manage to wee. I'm obviously keeping a check on this as urine retention can lead to urinary tract infections but so far she hasn't got this bad. Ella is also Autistic and so I need to keep a check on her as she often can't explain to me what the problems are she's having.
Kegel exercises are for problems with weak bladder and incontinence and so although this may help those of you who have this problem, for Ella it's the opposite at the moment.
Best Wishes
April
I have had CAtaxia for about 6 years and am awaiting a referral for this problem.I have to wear pads all the time as there is a deluge every time II am vertical or laugh.Many women of my age (54) havve leakages so I think the ataxia may be responsible for the floods.Just another problem to ccope wwith,I think bladder problems are quite common withFA. II am interested in the responses as there might be something that can be done.Ataxia patients are different and I think more drastic action is required if the problem is bad.Exercises are usually prescribed for some.
I can't help but see some similarities with Ella but I'm a 48 year old man. How can this be? I must be missing something obvious.
April Austen said:
Hi again, I know that Ataxia can cause bladder and bowel problems and think that these problems can be either difficulty with urinating and bowel movements and also the opposite of constipation and urine retention.
I think with my daughter the problem is due to the messages from her brain being so slow and abnormal according to the nerve conduction studies that although she feels the need to wee the messages don't get through correctly leading to her often not being able to urinate. Fortunately it isn't too bad yet and she does eventually manage to wee. I'm obviously keeping a check on this as urine retention can lead to urinary tract infections but so far she hasn't got this bad. Ella is also Autistic and so I need to keep a check on her as she often can't explain to me what the problems are she's having.
Kegel exercises are for problems with weak bladder and incontinence and so although this may help those of you who have this problem, for Ella it's the opposite at the moment.
Best Wishes
April
Hi Scriffycat, Ataxia in my experience can have the same symptoms whether you are male or female so it is possible for you to have the same symptoms as my daughter. I hope that you are getting some support with these issues and if not you should maybe speak to your GP or Neurologist.
Best Wishes
April
Although I don't have FA, I do have ataxia and have incontinence and constipation problems. I had TVT (trans-vaginal tape) surgery a couple years ago which has helped with incontinence, and for constipation, I take a Colace cap each day per my neuro (it's not a laxative, just a stool softener). I also eat as much fiber as I can, which helps. I think men as well as women with ataxia can have trouble. I don't blame it on my age (59), as my mom is 83, had 4 children, and has no trouble at all...,ha! I only had 2 children...,hmmm??? ;o)
Hi Rose, my daughter doesn't have FA but has an undiagnosed type of SCA with atrophy of the cerebellum and poor nerve conduction etc. She first had signs at 11 months old of not progressing to walk until 3 years and then being unsteady and falling often like a child does when they first learn to walk. Ella at nearly 17 still wobbles and falls just like the walking baby. She doesn't have bladder weakness but an inability to urinate when she feels the need to go which we were warned may happen and is to do with the messages from her brain to her bladder not working correctly.
We are sad this is happening to her but then we were told that at 12 years old she wouldn't be walking and at nearly 17 she still is even if not many steps without a stick and splints on her legs and a wheelchair but even so we are thankful!
Best wishes
April