Parkinson's Nurse update

[Loveispatient23]

Hi all, thank you for all your previous posts, they were most helpful. Since then we have had a few medical professionals visit.

The Parkinsons Nurse is coming to see my father-in-law tomorrow. Is there any questions we need to be asking?

The OT and Physio visited yesterday and recommended a new commode as my father-in-law was not very happy about going to the toilet on there. They have recommended one that goes over the toilet itself so we will see how this goes. The OT also checked for sores as my father-in-law is chair bound mostly, and wearing incontinent pants. She has prescribed a cream to help the redness.Even though my FIL has an electric bed she did mention that he may have to have a hospital bed at some point.

We also had the speech therapist out a few weeks back and told her we were concerned with his swallowing/choking episodes. She reasured us that his swallow was fine but that we should cut up things like bread very small. We have been sent a report adivsing on what foods to eat which seem a little restrictive. Bread being the No. 1. My mother-in-law isn't up to full speed on this, especially when shopping for food and we have to remind her to look at the specified diet. We have sent for a Wiltshire Foods brochure where you can buy prepared meals in but she insists on making all his food at the moment.

My MIL is 85 and is becoming a little bit confused of late, she still asks the question "Do you think he (my FIL) is going to get any better? We have to keep reiterating that his condition will gradually get worse and worse as it is degenerative but she doesn't seem to understand. We have tried to explain and she has information to read up on PSP but chooses not to. We have also told her that she can ring the PSPA anytime for advice or just to talk to someone.

[Millidog]

Hi We don't have parkinsons nurse, she came once and wasn't interested but we do have a neuro nurse and I would hope you get a good one and hope they play a similar role. They can be your link for medication advice and link with neurologist for such as trying madapor, antidepressants etc and are often the go between of neurologist and gp to action medication ir to engage other services such as District nurse visits They can push other services such as Ot and physio for more help if it's lacking. They will be someone to talk to about symptoms and how to best manage them. Perhaps most importantly the are probably your best perso to talk to about care support via so I'll services and again more importantly when is the right time to apply for chc. They will be te best person to support you on this but don't take oh you'll never get it as a response. I think you should talk to them about mil and the help she needs to care for her husband. At 85 it must be extremelyhard for her both physically and emotionally and I can understand she may not want to learnmore about psp. And finally re the hospital bed do have one sooner rather than later. In fact get everything they offer and before you need it as things can change suddenly hope some of this helps xx

[Loveispatient23 in reply to Millidog]

Thanks Millidog for your advice. Can I just ask, how do we go about getting a neuro nurse?

[Millidog in reply to Loveispatient23]

Hi, Through much reading on everyone's different situation on this site I believe every geographical health region operate differently some have neuro nurse, some neuro physio, some parkinsons, others district nurse and others are supported by charities such as macmillan, sue ryder and others. We are in West Dorset and after initially being regarded to a parkinsons nurse by the neurologist on diagnosis who visited once and disappeared into the ether we waited a year and were then linked to one of only 2 neuro nurses in this area. These are new roles born out of one of them in her work as mnd nurse at the local hospice encountering psp and with supporting funding they set up this small team only a year ago. They are based out of the regions hospice but we don't get hospice services but her support is invaluable. It may be worth doing 3 things - ask the parkinsons nurse and perhaps your neurologist ot, physio, SALT, gp what palliative care support is in your area (palliative care isn't just end of life), Google hospice and palliative care in your area....I learned a lot by doing this if only what we didn't get ! Perhaps write a post on this site stating your location and asking what specific support others know about in your area as I'm sure there will be someone not too far away and I've just thought if a fourth . .its worth asking the pspa if they know of support services in your area. I think the key thing I have learnt is that little is offered proactively so my recommendation is don't wait to see but question, search, challenge and rage a little....sometimes the loudest is heard and gets the best results. Good luck and if I can be of anymore help do message me gx

[Kelmisty in reply to Millidog]

Just to say our Parkinson’s Nurse is our neurological nurse where we are. She’s part of a community based neurological team.

Parkinson’s Nurse covers a range of neurological illnesses in our area.

[Scottoppy]

Hi Lov... Get the Physio to show you some passive exercises you can use to relieve the stiffness, it will only works for a short time but is worth the effort. A commode chair that fits over the toilet is well worth it, we still use ours to get my wife into the shower even though now she is double incontinent and cannot use the bidet toilet I installed. There is usually a neuro nurse (often call the Parkinson nurse) at your neurology department at the hospital, your GP surgery can put you in contact. Whilst your FIL is still able make sure you get LPA set up and an Advanced Directive so that his wishes are respected as things get difficult, in particular in respect of PEG feeding which can be difficult. Once a PEG in installed it cannot be with drawn but you can refuse to have it. Also consider the question of DNR as this should be in place whilst he can agree to it cognitively. Good luck on your journey with this cruel condition. Love and Hugs Scottoppy