What to expect?

[LongDays44]

My dad is currently bed bound and he is displaying many symptoms of MS which have left him unable to sit up without blacking out, tremors in his legs, sleep disturbance and noisy breathing. After recent UTIs that left him hospitalized for a few weeks he now has incontinence and constant leakage of urine.

I’m really worried for my dad and I know his condition is depressing him. Based on your experiences with your loved ones what should I expect as his disease worsens?

[TK-67]

I'm so sorry to hear this, have you registered with the MSA Trust - ringing to speak to one of the MSA nurses is always helpful. Are you getting any help from your GP or specialists for example the Parkinsons's team?

Sadly everyone with MSA has a different experience which doesn't make it easy at all. With my mum I found getting all the information I could and then having a plan to support me and mum was the essential thing to be able to manage the uncertainty. The symptoms you are mentioning can be managed but I know from experience getting help can be a trial.

[Paul_and_Sue_Wood]

Hi

All you have indicated are the symptoms and side effects of MSA, but it could also be anything else.

MSA is a diagnosis by elimination so if they can says its anything else it probably is MSA.

The biggest risk is infection such as UTI and chest infections as the system fails to control breathing/swallowing resulting in aspirational pneumonia and Urinary infections. Both of these need GP or Hospital interventions with antibiotics.

Unfortunately all you can do with an MSA sufferer is manage the condition.

Please talk to the nurses as MSA trust as they know a lot more and can offer more medical advice.

Good luck.

PAul & Sue

[Blueirises]

Do contact ME A nurses.My husband had a supra pubic catheter fitted, it ended the misery of the things that you describe. Not entirely problem free but a real improvement.

[StevenDehart]

Expect potential challenges in daily activities, increased reliance on assistance, and emotional fluctuations. Communication with healthcare professionals is crucial to address evolving needs. Surrounding your dad with support and maintaining open dialogue can help navigate the complexities of his journey.