I’ve only just been diagnosed but already I seem to be having problems swallowing. I have only minor motor problems and I was up for the challenge of facing these through exercise and healthy diet to try and stay drug-free for as long as possible.
Now, however, I’m wondering if there is any point when everything you read about swallowing problems seems to point to chest infections and pneumonia.
I’ve asked for an appointment to get my swallow checked out but in the meantime I’m losing weight and not taking in enough fluids because, frankly, I’m scared.
Has anybody found any therapies to help with this problem? At the moment I’m finding it hard to motivate myself
I started to have the same swallowing problems but the way round it for me was to let my body take the lead. smaller bites, chewing longer, slower eating and avoiding the stuff that makes you gag for a while, and now my habits have changer and gagging eased much better you can think of it as you living through your own evolutionary process let your bodies control system do it.
Thank you for your reply.
My problem is that my gag reflex seems not to be working, so I can’t trust my body.
Maybe depression is setting in, (is it surprising?), but I can’t see past the thought that just eating and drinking could be killing me.
Hope things go well for you.
Was officially diagnosed on Monday. Been an emotional, roller coaster of a week. He’s great very optimistic while the rest of us where stressing about it all. We have all kind of calmed down now and are trying to get our heads around it. Knew it was coming but still a blow. Get your doc to refer you for a camera test. Not the nicest of procedures but it hopefully sorts out the swallowing issues. Good luck on your journey x
I’m so sorry to hear about your swallowing problems.
If you haven’t already looked, we have some information about eating and swallowing available on the website that you might find helpful. This includes information on Speech and Language Therapists, who are trained to help with swallowing issues.
My GP has requested the appointment for me now so at least I feel like something is happening.
He also prescribed the powder to thicken drinks.
I’m feeling more positive anyway and trying hard not to feel sorry for myself!
I’m sorry to hear about your swallowing problems. I have the same d*mn thing and, like you, am avoiding excessive medication. Not that there is any that I know of to address this specific problem.
However, I have adopted some tactics to lessen the risk of food ingestion by the lungs and am happy to share them with you.
DRINKING: Put head up to take in fluids but then drop your head towards your chest in order to swallow. This seems to avoid coughing fits that tend to happen if liquid spills over into the wrong tube!
SOLIDS: Opt for smaller mouthfuls that have some liquid content. Dry food seems to stick and land up in the vocal chords. This is taking “singing for your supper” to extremes!
PILLS/CAPSULES ETC: These are a real problems because it’s all or nothing as to which tube they go down. A complete capsule or lozenge doing down the wrong way with its contents intact poses the biggest risk so far as I can see. I discussed this with a nutritional specialist and he advised opening the capsules and imbibing their contents suspended or dissolved in a small amount of water. It would be good to check first as some capsules are designed to carry their contents through the stomach intact to do their work in the intestines below. So far, I haven’t encountered that problem.
THROAT CLEARANCE: I have a lot of difficulty with small amounts of material getting clogged up in my vocal chords. Just clearing the throat doesn’t always shift them; but I find that “growling” reaches the parts that ordinary throat clearance doesn’t reach. It sounds a bit fierce and causes funny looks in polite company but… needs must!
I hope all of this helps. Hang in there and keep swallowing.
Cheers
JCPB
Thanks for your advice. I’m working out which sorts of food feel easier for me to cope with.
At the moment I’m not on any medication but no doubt managing tablets will be one of the joys to look forward to.
JCPB I don’t know if this is something you might find helpful, but I love to sing, and I find that if I run through a few tunes it seems to relax my throat and make eating easier for me.
It’s a nice thought, thank you. But I played the clarinet semi-professionally for over 50 years, often as part of the orchestral accompaniment to the great choral masterpieces, and I couldn’t begin to compete with the chorus members. It was the presence of a tremor in my playing that revealed my Parkinson’s long before the NHS formally diagnosed it. My swallowing problems may be partly due to playing with a hard reed. This does effect clarinetists quite badly…Sing on. That’s great!! JCPB
I would never describe myself as a great singer but luckily it doesn’t matter for this purpose!
I used to be a fairly competent pianist and one of the first symptoms I noticed was that my fingers didn’t work as well as they used to.
I hope you can still get pleasure from your music.
Hi I’m so sorry to hear about your trouble with swallowing. This forum has been quite helpful for me too as my dad who has had Parkinson’s for 3 years now has recently not been able to swallow well. He also has Dementia with Lewy bodies so we thought maybe that was making it worse? We are almost scared to take him to the doctor through fear of what he might say! Has anyone else been in this sort of situation?
Hi jgo,sorry you are experiencing swallowing problems,I know from my personal history how distressing this can be. I have lived with this disease for 20 years & came across this problem about 4 years ago. I can only comment on my situation which worsened as time went on. In my case it all developed from a anxiety build up of the fear to swallow & it took time to re-educate myself to understand it was a mental rather than a physical problem which I eventually overcame after about2/3 months & things returned to normal. I don’t know if this might help but I used to say to myself “in,drink,swallow,gone for taking pills & drinks & “in,chew,swallow,gone” tor eating solids I know it seems stupid but I found that after a time it started to become natural again.well it worked for me & i hope it works for you if you give it a go. Please seek professional advice if your difficulty persists.
Hi Chodia,
Thank you for your comment. It’s interesting to see you say that your difficulty with swallowing was more mental than physical because I’ve found the same.
I have drama queen tendencies and in the early days after diagnosis I panicked and was frightened of everything. My throat still feels a bit tight but I’ve stopped worrying about it so am now eating and drinking normally.
Hi Chodia,
I have discovered quite by chance that using fizzy water is highly effective in overcoming difficulties with washing down pills and capsules. It seems that the bubbles disguise the shape and size of the offending objects and makes swallowing them much easier. That’s certainly true for me. It completely overcomes my gut reaction to resist swallowing. The only snag is that the fizzy water has to be in full “fizz”. It’s no good waiting for the bubbles to settle. My solution to this is to keep a small stock of 250ml bottles of one’s chosen fizz and to open one of them at the moment of pill-taking. 5 minutes later the fizz will have died out. My chosen fizz is San Pellegrino but suggest that any aerated spring water would do the job. . Hope this helps! Cheers JCPB
I’m so sorry to hear about your trouble with swallowing. This forum has been quite helpful for me too as my dad who has had Parkinson’s for 3 years now has recently not been able to swallow well. He also has Dementia with Lewy bodies so we thought maybe that was making it worse? We are almost scared to take him to the doctor through fear of what he might say! Has anyone else been in this sort of situation?