My husband Peter has cerebral Ataxia and he is now going to the loo about ten times a day. He also can't hold hus urine and wets himself. It is so humiliating for him.We have an appt with his neurologist in Feb.
We are resident in Brussels and there does not seem to have any support.
Would love to hear from you.
Lorraine
I'm a 55 yr old male. Diagnosed with CA 2 years ago. 3 months ago I developed frequent urination problems. I self diagnosed enlarged prostate. Started taking 300mg of Pygeum a day. After 1 month my urgency and frequency has declined noticeably. It has worked for me so far and I continue to take and problem has not returned. (Fingers crossed) Do consult your doctor.
Thank you
I am a girl and I have SCA1 and I developed this problem a few years ago. I found an excellent physio who specialised in urinary stuff and she taught me to control it physically. I still leak a bit as I get to the loo so I use night sanitary pads. He could try yours if you have any spare? They do make special pads but I am too embarrassed to get any. Hope this helps.: )
Unfortunately it is a common problem though!
Do not be embarrassed. You certainly won't be the first person with this problem!
I use continence pants which are really good and I think they do the same for men. I get my pants on line . I saw a continence nurse but he was no help as he just looked for pressure sores and that was all and I needed advice on products so it was by trial and error and now I put the pants on my supermarket shop which I order on line. Good luck! I have no feeling 'down there ' so I only know when I am passing urine when I sit on the loo and hear the sound as I go ! It is important to keep drinking as otherwise you are likely to get a UTI ( urinary tract infection .all the best Sylvia
My brother (76) has CA & uses pants.
hi lola my hubby has been having tia in the worst part of the brain the basal ganglia he is only 45 I to have noticed that my husband scott need the loo such a lot and has wet himself so seems to be common all I can offer is a understanding of what you are going through but get him back to the doctors and tell them straight .good luck x
Hi Iris, thank you for your reply. You seem to be having a tough time. My thoughts are with you.
With love Cx
Hi Lola, my sympathies go out to your husband as I know exactly what he is going through. I too suffer with urgency, frequency and a poor flow. I was lucky and was seen by a continence nurse who suggested "intermittent self catheterisation". This is non invasive and once you get over the stigma is really easy to do....and quick. It really gives you your life back and I am no longer afraid of long journeys, or going shopping, or leaving the house for anything. I also use pads which are available at the supermarket and pharmacy and come in different absorbencies. They are made by Tena and are for men.
I have MSA which was originally diagnosed as Cerebellar Ataxia and incontinence is not something that should be treated as a taboo subject. Please get you husband to ask for help from his GP / neurologist. The catheters are available on the NHS in the UK.
Thank you for your kind words. I have just got the Tena pads for Peter. We have an appt with the neurologist and will ask her what we can do. I hope you are ok and once again thanks for your kind words.
Lola
Hello I have Cerebral Ataxia and I go to the loo a lot I went to my doctors and found out it was an In large Prostate get checked out
Thanks . Am off to Neurologist soon.
Hi Lorraine,
Have you considered the sheath and bag option ? Not as invasive as a catheter system.
Here's the Coloplast UK website : coloplast.co.uk/Global/Cont...
and the Belgian version : coloplast.be/nl-BE/Global/C...
I have used female incontinence pads for years due to urgency/stress incontinence - I buy them at my local supermarket. Are you able to access an incontinence nurse/clinic ? Angela x
My bladder is not good either & I wear pads. My GP prescribed Naftidrofuryl capsules. Please see your GP again. He/she is the person who can help you with this most embarrassing problem. Also if there is a continence nurse attached to your surgery she will advise you on how many you need, & you can get them on the NHS, but you MUST ask.
Hi Lola 007 , I'm glad to hear peter has got some Tena pads they great for when ur got appts it takes the stresses away I myself wear Tena pants cause I feel a bit more protection..
I have Msa-p /tortecollis of the neck which type of dystonia I've also got a tremor in my leg s which isn't noticeable that much only when I stand ....
Regards
Joanne
Dear Joanne,
Thanks for your reply.
Much appreciated.
Your tortecolliS, is that also an extra symptom of CSA 6?
Regards,
Lola
Need some advice :(
New to Friedreich's Ataxia
