Inability to control micturation for long and takes too long to eat.

[Drmahum]

Hey I am from Pakistan and my Dada was diagnosed with pssp 5 yrs back but now he can't control his micturation for more than a minute and also takes a lot of time to eat often ends up coughing. He takes semisolid diet through mouth. Does anyone know is it the right reason for tube feeding. Though he does not have aspiration traces on xrays neither any symptom. At times his legs gets stiffened that he can't even move an inch for hours.. Please someone share tips how can I help him. I just find myself extreme helpless

[AJK2001]

I'm afraid it does take longer and longer for someone to eat as the swallow slows down, you just have to be patient. Soft foods, thicken liquids may help reduce the coughing. Has he seen a dietician and SALT ? They would be able to say if a PEG was advisable. If your dad decided to go that route (and it's a very personal decision) it's better to have it put in whilst the person is relatively well, as it has a better chance of success. Or they might be able to advise on thickened nutritional supplements to keep his calorie intake up.

I found feeding one of the most emotionally draining parts of PSP and would often go home to my husband in tears because it had taken so long for mum to eat so little and I could see her fading away, so you have my sympathy. xxx

[LuisRodicioRodicio]

Hi Drmahum!

In our case, we went from a semi-solid diet using a small silicone spoon, which stimulated the use of the chewing muscles. Later we began to mix proteins and vegetables (or legumes) by means of a mechanical arm, obtaining a puree that was supplied with the spoon but with a lot of waste and patience.

Now we supply the puree with a feeding syringe (large of about 70 to 100 cc) depositing the food between the cheek and the molars. The latter is faster and the waste is less but .... the exercise of the chewing muscles decreases very notably.

By internal mail I send you our experiences of 8.5 years hoping they can be useful to you.

In the database of the PSPA Association there is very good documentation that can help you.

Regarding urine problems, in our experience it has been related to a urinary infection. It is advisable to consult the doctor.

Hug, luck and courage.

Luis

[Dickwin]

Drmahum,

My spouse, diagnosed with PSP over 3 years ago and Parkinsons over 5 years ago, seems to be in a similar situation. Incontinence is becoming a near constant issue and she is beginning to develop a very regular and persistent cough. But fortunately, no aspiration pneumonia so far. But she seems to be coming and going to the bathroom half the day. It is so frustrating.

Incontinence pads help a lot.

These issues we are both seeing with our loved ones seem to be pretty typical for the stages/symptoms we are seeing.

Keep up the good work.

Dick