Advice on doctors

[RunPeace]

Dear Forum friends,

First of all, thank you for all the responses to my previous post. Thank you for sharing your stories and for all the good advice. I had a short conversation with my husband and as I suspected, he is clueless and hopes to get better soon. I told him that he might not get better and we need to be prepared for anything. He was sorry for me because I am so worried for him...

My new question is about doctors. We are not seeing a particular doctor on a regular basis. The last neurologist we saw told us to see him whenever we wanted. We went to see a specialist in Barcelona and are waiting to see if my husband is chosen to participate in a new clinical trial. My husband is on Sinemet, three times a day and that is all he is taking, with no mayor effects.

The speech therapist told me I need to take him to a otorhinolaryngologist ASAP for his dysphasia as well as to a nutritionist for his dysphagia. Is this true? What can they tell us if all of this problems are due to PSP?

What doctors should we see? and which doctor should be the primary doctor?

Thank you

[Hidden]

Hello. I have a neurologist as well as a speech and language therapist as people with psp are prone to speech difficulties, as well as choking. I would contact the neurologist again and ask for his thoughts and if a referrral to an Otorhinolaryngologist (ENT) is appropriate. Good luck.

[Hidden]

Your primary doctor would be your GP. Get the GP up to speed on PSP. This is when your educating others about this disease starts.

Most of us found a neurologist become less useful as the disease progresses. I stopped taking Larry to his last neurologist more than two years ago. Our GP practice had a home visit option. When it became difficult to get Larry to the office they came here once every 3 months.

The otorhinolaryngologist will probably do a swallow study to see how well your husband is swallowing food and liquids. X-rays will be done.

A nutritionist I am not sure about. Make health foods he can swallow easily.

PSP doesn’t respond long to Sinemet if it is effective at all. Larry saw no benefit from it.

[Dadshelper]

Dad's neurologist eventually said there was no medical reason for more appts unless Dad felt he needed to see him. At this point his GP became the go to doctor. The GP handled all referrals to see other specialists as needed plus did all the normal "doctoring" for the various issues.

As you start to use more then one doctor try to keep everyone in the loop so medicines and treatment plans are known by all.

Ron

[Christine47]

Have you checked ClinicalTrials.gov? There seem to be a number trials possibly available. One is the ABBV trial which is starting up again.

[AJK2001]

We did not find the Neurologist much help, they can't offer an effective treatment and don't get involved in the daily challenges of PSP.

It is however useful to have one medical professional to oversee the persons care, so they can see the changes & you have someone to call if concerned. We had a Community Matron, who was able to prescribe & do referrals as needed. She looked after Mum for over 3 years, seeing her at least once a month & more frequently if it was needed.

Early input from a Nutritionist could be really valuable, they can advise on how to add "hidden" calories to food and prescribe high calorie supplement drinks of a suitable thickness for your husband's swallowing needs, this will help maintain his weight & thus if he gets an infection, he is more able to fight it off.

Mum was on Sinemet for a while & it did help with her walking for a time, but then the condition progressed & it made no difference. She also talked about how she was going to get better & refused to accept that she wasn't for a long long time, some might say that is why she did so well for so long.....

[Caro2132]

I agree with the previous responses, a swallow test is important and a nutritionist can help so that weight loss can be limited. I also think It is essential to get your GP involved and bear in mind you may have to educate him😊