I hope everyone is doing well - We have entered a new normal of significant challenge in swallowing this week. I am trying to come up with ideas of what to try and give her … anyone have suggestions? I will browse the forum of old posts, but I wanted to check in with everyone.
This has been a rough month of incontinence, sleeping and now swallowing has really slowed down.
Image is of our daily breathing treatment to keep the phlegm at bay.
Hugs to all …
Kim
Hi Kim. So sorry to hear of your Mom's difficulties. My husband also having increased difficulty swallowing. He is doing okay with, for some reason, eggs! Mostly with over medium and i cut them up really good and he can eat pretty well. For him, they seem to slide down easy.He can eat scrambled but they cannot be well done...they have to be light and fluffy (again, cut up pretty fine). He is still drinking his protein drink diluted with whole milk but had to cut back a bit due to excess phlegm. Jello, pudding, mashed potatoes (white and sweet pureed) and gravy with pureed chicken added. Sometimes pureed piece of cod added. Key is small amounts at a time.
He just had his first bout of fluid in upper lungs (right worse then left). A rx of a z pack for 5 days did the trick.....this time. He is sleeping more and talking less.
Veggies and fruits are hard; i have been buying the baby food pouches and he does ok. And of course applesauce.
What meds does your Mom have for the phlegm with the breathing treatments?
My husband as been 100% incontinent for about nine months now plus he has been bed bound for about 3 months....started rapid weight loss and loss of muscle mass and i could not move him any longer safely by myself.
So hard isn't it....for us and them. But we keep on going and trying new things, any thing, that works.
Keep us posted...hasn't been that long ago i saw a sweet picture of your Mama smiling with her water melon. God Bless!
Thank you for that complete detailed answer. I’m sure it will help many of us reading today.
I used to give hubby A large smoothy daily made with yogurt a banana and added fruit ,tinned peaches or apricots etc
Thank you for the suggestion - I am going to familiar with some smoothie recipes
Sorry momma has reached this stage. Smoothies, milkshakes with added nutrients and fiber work best for me. You can try her on minced foods, if this is still too difficult, then try pureed.
Tim x
I am starting to experiment with food -- yesterday she enjoyed a really good smoothie, and today we shall have ice cream (salute) --- more to learn for me, thats for sure. Hugs to you Tim
All of the above are great suggestions. Sending hugs to you both... Granni B
Hugs to you Granni B
very sorry your momma has reached this PSP's stage. Bigg hugs to you both, lot of love. Elena
Hi Elena -- I hope you're well. The changes can be overwhelming -- one day at a time.
Hi, I posted a question recently regarding chewing and swallowing which may be worth reading through healthunlocked.com/psp/post...
There is also a link to a document on eating and diet which is very good
healthunlocked.com/redirect...
I have found distraction works well, a quick wander to another room and back and my wife seems to pick up a little and manage a little more food.
Keep strong xx
I agree with all of the above suggestions and I am just so sorry that you have reached this stage, sending you lots of love xx
Hi bazooka111!Iam preparing an answer to your question but I have another question:
What is the effect or benefit achieved with the
"daily breathing treatment"?
What means "to keep the phlegm at bay".
Thanks a lot.
hug and luck
Luis
Hi Luis!!! I will look for your answer, I always do. So they started mom on Ipratropium Bromide and Albuterol Sulfate inhalation solution twice per day. She has phlegm buildup and they suggest that it will be beneficial to her lungs. I will say, that we have being doing these breathing treatments for several months, and the phlegm has pretty much disappeared.
Hi again!
La Salle IRF and “wobblybee” reports about a voice treatment fot PD (Parkinson Disease):
Lee Silverman Voice Treatment (LSVT LOUD®) is a popular voice therapy that has been shown to improve voice loudness in people with PD for up to two years after treatment. LSVT LOUD therapy consists of intensive, high-effort speech exercises. LSVT LOUD involves 16 treatment sessions (four sessions per week for four weeks), as well as daily home practice. The exercises include prolonged vocal phonation with increasing volumes and changing pitch, functional words and phrases with increasing volumes. Throughout the 16 sessions, participants progress through a systematic hierarchy of speech exercises beyond words and phrases and into "outside the therapy room" conversations and transfer tasks.
LSVT also provides benefits in the safety and efficacy of swallowing, improving pharyngoesophageal swallowing function, as well as the effectiveness of involuntary coughing in people with PD.
I am sending you more practical information by the "internal chat"
Big hug and luck.
Luis
This program was extremely helpful with my husband's swallowing issues (and weakening voice). He also is in speech therapy for swallowing and periodically is given a swallow test in radiology to show how much of what he is ingesting is being aspirated into the lungs (one of the top dangers for PD patients who can develop aspirational pneumonia). Very important to know what level of thickness he can get down without getting into lungs. He had pneumonia 2 years ago but has stayed clear ever since with these exercises and a diet of no liquids other than water and a little coffee. Everything else must be thickened.
Hi Kim, Sorry to hear about the decline of your Mom. Does she have PSP or CBD? The last time my husband had a barium swallow test the therapist told me about a book she recommends- Soft Foods for easier Eating cookbook. By Sandra Woodruff RD and Leah Gilbert-HendersonPHD. Recipes for people who have trouble chewing and swallowing. I purchased it as part of my preparations for the next phase. I have found that milk products increase the phlegm too much and no longer use milk in his smoothies.I thicken his other fluids with Simply Thick gel. He likes everything his drinks very cold so I have his water prepared in a container in frig and add a few ice cubes to his cup just before I give it to him. Seem to make the thickened water more palatable for him. My husband is still on solid, but modified foods, but I am seeing subtle changes lately, especially with coughing trying to clear his throat. What is the treatment that is being used for your Mom? Please continue to keep us posted-you are amazing!! BIG HUG as you continue to navigate this journey.
Hello friend! Thank you for the book recommendation -- I will get a copy right away. We also discontinued milk some time ago, and have use almond milk as a replacement -- the mucus build up was very challenging with dairy. I am looking at using thickener for the first time -- I will try soon as you suggested. Mom had thickening phlegm pretty bad, to the point that I had to call 911 -- she was choking so bad, that it scared me so bad -- I have never called 911 until that point. They prescribed Ipratropium Bromide and Albuterol Sulfate Inhalation Solution, and we do a breathing treatment twice per day - it has made a major difference. Big HUGS back to you my friend xo
Hi Kim, We also have a cup that is a low volume control cup. It is called a provale cup for dysphasia, also recommended by speech therapist. It only allows a very small amount of fluid to enter his mouth at a time. He can still enjoy a little unthickened fluid that way on occasion, which he enjoys. We have also been advise when eating he has to use thickened fluid only, unthickened water is allowed, (sometimes for a treat he gets some Sprite in the cup) Unthickened water at other times as tolerated and that's when I use the provale cup. Choaking on water is not as likely to cause aspiration pneumonia, choking on food or beverages other than water has greater potential for bacterial growth with aspiration. provamed.com is the site for the cup.
We have the brown 10cc size, allows only 1 cc of fluid to enter mouth at a time. Chip tends to Gulp, so this cup helps control that. He still coughs sometimes, but much less with the special cup especially if he wants unthickened fluid . Unswallowed saliva is an ongoing problem, I now keep what we all the "drip" towel near by for him.
😊
We have been blending regular foods to liquid state. We use gravy, broths, water or sauces. We use medical syringes to feed her with. So she has a lot that she can still eat with this method. Good luck!
Thank you so very much! Learning something new everyday!
Sorry that you have reached this stage. Once my wife got there, I think she decided enough was enough, and stopped eating and drinking. She passed within a few days while we all thought she was going to make it through the summer. I feel for you.
We are pushing through the best we can -- -Sadness swept over Mom yesterday. This morning however, after a restful night -- she is eating berries and bananas! My heart is literally smiling. xo
Kim, so sorry to hear this update. Continue to find joy whenever and wherever with your mother. Sending warm hugs
Thank you so much -- warm hugs are healing! It is such an uphill climb -- this disease is relentless. Trying to find joy. Hugs
My wife is also experiencing difficulty in swallowing and often chokes even while drinking water.This difficulty is arising from the progressive paralysis of her tongue. A sign of paralysis of the tongue is the slurring of speech.
In consultation with a dietician, we have adjusted the food so it is easier to chew and swallow. As well, my wife is unable to feed herself and so must be fed the right amount of food for her to chew and swallow without choking.
As suggested in a separate post, smoothies can be a viable and tasty alternative.
I hope this helps.
Thank you so very much! Fatigue has played a big part in her struggle the last few days -- I have adjusted her diet to soft foods, and I have to also be very patient in her in ability to chew and swallow --- letting her go at her own pace. I am learning. All of this is so very overwhelming. Thank you for your words. It is going to be a smoothie day 😀
So sorry to hear of how tough it's been for you both. My mums swallowing has slowed down for quite a while now. I make homemade fish pie I mince fish with white sauce and put mashed potato on top but not a too thick mash. And I blend up cooked mince in tomato sauce and put some mashed potato on top of that. She seems to do okay with that. I also buy tinned soft fruits like pears and peaches in juice I blend that up and put thickener in it to stabilise it. That seems to be okay too. Sending you both lots of hugs.
Thank you so much for this insight. I am experimenting, and trying to also find what is going to work as the season changes with her health. Fatigue has played in to this as well. I've also learned to shut everything down -- I started playing soft piano music as we eat -- it seems to be relaxing -- no more distractions. Just this morning, I mixed cottage cheese and diced peaches --- he loved it. I have also learned that I need to slow down, and just let her take the time she needs between bites.
Love and hugs to you xxx
So sorry to hear this Kim. Have you had assessments by SLT and Dieticians? I was very lucky and they would come and see Mum together to make recommendations and prescribe the appropriate thickness drinks - these were really helpful as they contained a balanced mix of vitamins & minerals and also some fibre and were suprisingly nice - especially liked the one that was like drinking nutella - well you have to try them, so you know what they are like !!!!
Found rich creamy dairy desserts, were good, they slipped down easily but not too easily and weren't sticky/starchy which things like mashed potato can be. Also they are very calorie dense.
Hope you are both still finding moments of joy - they maybe harder to find but are all the more precious for that.
Love & hugs to you both xxx
Thank you for this!!! I will look into this right away. Some days are harder than others on this girls heart. My soul misses her .. and she sits right here next to me in the quiet. I miss our conversations, I miss her laughter and little giggles, I miss her genuine hugs that made me feel so safe. So now, I do all the talking, giggling for us both, and heartfelt hugs as I cradle her before every nap during the day. One day at a time .. that’s all we can do right? Big warm hug coming your way! Xo Kim 🥰
I gave my husband chocolate mousse and also he managed from a teaspoon McDonald's milkshake
Excellent — I have McDonalds points I need to use — that will be our treat today!!!!
Oh Kim, I am not looking forward to this stage. ..😪 You are doing so well.Richard x
Thank you Richard — hugs to you my friend
Hi Kim, You work so hard for your Mum! I admire you and thank you for your insight. My husband practices swallowing every day. He does the Mendelssohn, and supraglottic swallow 2 sets of 5. Our speech therapist made a practice sheet for us to follow daily. Trying to keep those swallowing muscles strong! All the best, Linda
This is great advice thank you! My Momma deserves so much more than this dang disease — She worked ahi her all of her life raising us kids and doing for so many people. Caring for her is my soul thanking her for the care she provided me. I know there will come a day as I walk this life journey — without her, so in this time I will cherish every day I have her. Hugs to you Linda
Speech pathologists are well versed in this area and will be a great help. Just a few hints. Before swallowing tuck the chin to the neck. For liquids use a thickening agent like Thickit. No talking during hinting, and, if course, correct choice of food and preparation are key. A feeding tube is for nutrient, but does not reduce aspiration. I have been fighting and sometime losing to aspiration for years. Best of succes
Thank you for this insight 👍🏻
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