Hi all. Ive only joined this forum a few days ago.
My dad was diagnosed with PSP in Aug 2019 aged 63. It took a very serious fall from the top of the stairs which gave him this diagnosis. Its a shame it took nearly 3 years for the professionals to figure out why dad was driving slower, falling, tired and ageing so fast. Once he was diagnosed my 4 siblings and all their partners quickly got to work to find out all about this nasty condition.
He is able to walk with support from an adult holding him and speech had drastically declined so are his vision.
What worries is now is whilst hes eating or just stopped eating he coughs and then goes into a choke, to the point that his eyes roll back, jaw locked and unable to respond until at least 15 seconds. It was so scary for me to see this twice this week. I gave back blows to his back and my sister tried to hold his mouth open to breathe whilst panicking. We notice this happens with water with added thickness too.
Its been such a hard 18months, we are always trying to help my dad. The worst part is how my mum who looks after him full time is still in denial about his situation and thinks he will get better..
I appreciate any answer.
Ranj
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Banta123
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Hi Ranj, sorry but this can be very common as it was with my husband, due to the swallowing reflex deteriorating. Water was what cause many problems and he didn’t like it thickened so I stopped giving it to him. Instead he drank mango juice which was naturally thick and all other drinks thickened, cappuccino, hot chocolate, fruit smoothies, thickened fruit squash etc. I puréed all food once choking became regular and kept him sitting up for at least an hour after eating or drinking. He also had a swallowing test at the hospital which showed he could still swallow but not solids. One thing that did help was if I didn’t panic and spoke calmly to him. Once when he was at the Hospice day Centre, he hadn’t had anything to eat or drink but had choked on his own saliva. I was told he was having a crisis. When I arrived they had a tube down his throat, 3 nurses were very vocal and panicking and said they were going to admit him. I spoke calmly to him and asked them to remove the tube as they had already told me nothing was coming up. I refused to let them admit him and they insisted a nurse accompany me home. I spoke to him calmly, said he was not staying and by the time I got him in the car, he was breathing normally. I can understand their anxiety but it was making things worse. Once I did have to perform the Heimlich manoeuvre when he stole a chip from my grandson’s plate in the garden of a restaurant. I’d never done it before but seen it on the TV and as he wasn’t breathing at all and back thumps weren’t working there was nothing else to do. My whole family were there and other customers so it was quite an event. It worked and soon after I was feeding him a soft omelette. Eventually we were loaned a saliva pump which helped a lot as it could suck saliva and puréed food from his mouth if he was choking and also prevented it if I kept saliva clear. At his request 10 months before he died, he agreed to having a PEG tube fitted which totally stopped his choking (it is still possible with a PEG but it didn’t happen with him). It was his decision and not everyone wants one but for my husband the last months of his life were a huge improvement on the last few years.Best wishes
Thanks Nanna for your kind words. Yes your right, being calm is key as we worry but we didn't consider how it affected my dad..
I think the pureed food will definitely be a change we will have to adjust too and i like the sound of the saliva pump.
Im glad your husband was able to enjoy the latter part of his life. Its just so scary trying to understand all the difficulties he faces and trying to support him the best way possible. Im lucky to be working from home during this lockdown and been able to see him more than usual.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we ere living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family I am sending by chat the notes-document with our experiences and our informations hoping could be useful to you.
Thank you sooo much Luis. It shows there is much love and support out there. I really appreciate your reply and will take the time to read all the notes you have sent me.
We did not experience this however we were very careful adjusting the food consistency every step of the way.
Speech and Language therapist will adjust food thickness, thicker at early stage to prevent choking by it moving back too fast, and then thinner again as mouth/tongue transport fails and thick food would get stuck in cheeks or come back out mouth again. We found slicker things like dairy moved smoother.
With our therapist we noticed a strange thing. At first we avoided eating while extremely tired but we actually experienced that tiredness allowed the body's automatic swallowing ability to be less affected by PSP disrupting it. Thus feeding was more successful while tired, obviously still had to be extremely careful.
Swallowing requires 100% concentration so it is important to have no person talking or asking questions. We had to specifically ask all carers not to talk or ask questions like too hot, had enough etc, just have them consistently finish the bowl of food every time. We also ensured TV. We experimented with music on or off, it sometimes helped being on.
The majority of coughing and choking was on saliva. We asked the doctor to prescribe Hyoscine travel sickness patches and used 1 every 3 days which completely stopped saliva, thus stopped coughing, which gave strength back. Tiredness after new patch applied was a side affect that needed careful management.
My Mum choked regularly though not as severe as you describe. Having an assessment by a Speech & Language therapist is key as they can advise on what foods to be avoided and what level of thickness should be used. One thing I found was Mum was choking maybe an hour after eating & we were able to trace it back to things such as seeded bread, which she was able to eat without choking but seeds got left in her mouth which caused her to choke later.Agree very much with Key4U about allowing the person to concentrate on eating & not talking to them during this time.
Hope you are able to find something that helps. xxx
Hello Banta/Ranj,Yes this is a very difficult-to-deal-with condition .... the good thing is that PSP stands for Please Stay Positive! I was diagnosed 3.5 yrs ago with PSP in 2018. I am 80 and deteriorating very slowly, so far.
My doctor/GP is a Punjabi Sikh, 2nd generation, and I have a therapist friend here in Malvern who is Punjabi. Shall I forward your information, hoping that either of them might help?
I have made a 3-page document about many of the things I have found out in these 3.5 years past, plus options and advice. I am not a doctor, but was a therapist for 25 years! Best to send to your personal email address - I am happy to do that so please if you like to tell me yours. I am at tim@thebowenman.co.uk. Keep on keeping on, and best wishes. TimbowPSP
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Love you lotses dad xxx
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