The speech therapist came last week and gave Sandy a swallow test. I kind of wanted it just to see where he's at. I suspected that he was having minor swallowing issues. She said he does not have any major swallowing problems, just slight ones...such as not swallowing all the liquid in his mouth - so he should swallow twice when drinking. He still throws back a mouthful of pills at once even though I try to talk him out of it.
I think he's determined not to give in to swallowing issues as he knows that the disease is getting very serious at that point. He eats very slowly and has for a couple of years (I should take a lesson as I wolf my food down as if the house is on fire)..probably because I have a million jobs awaiting me.
So...the swallowing issues, although minor at this point, have begun. I am thankful that it's not a problem at this time and his voice, although getting softer, is still there. Right now he's calling because he wants to get out of bed. His body, however, is really in bad shape. He is as hard as a concrete statue and even though he only weighs about 150 pounds, it's impossible to push him even a couple of inches if I want to move him either to sit up straighter or move him in bed. His left side is practically useless but fortunately he can eat with his right hand. He can't take even one step and is having trouble even standing for more than 10 seconds while hanging on to a bar. His mind is still sharp although when I ask him to move a body part, sometimes he just looks at me like it doesn't register for a minute. Disconnect from brain to body.
I wish I had journaled this experience from the beginning but didn't take the time. This site is helpful because we can look back at our own posts to recall where we have been.
Nothing really to ask you. Just filing a report of sorts. Thank you, dear people, for listening.
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journeyofjoy
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Was a recommendation to thicken liquids made? You can just a small amount of thickener, it does not have to be like Jello...maybe a nectar consistenty.
She didn't recommend a thickener at this point. She did say she could give him "Vitalstim." It's an electronic thing that causes the throat muscles to tighten up and work better. Sandy opted to wait for a while first before having this.
Almost a year ago my husband went through electronic stimulation/throat muscle treatment. He was at the beginning stage of swallowing issues. I took him to see a Voice therapist because he was coughing up phlegm regularly. The cough kept both of us up at night and I thought maybe he might be getting pneumonia. The electronic stimulation on his throat muscles taught my husband how to forcefully get rid of phlegm, which in turn helped to ease his swallowing. I’m not certain of this, but I think the earlier you can seek treatment the more likely they will remember down the road of what to do and how. At least that’s what happened for my husband. He’s much more aware of what he needs to do to swallow and clear his throat. Who knew this is something that needs to be taught? Anyway, almost a year later and no more nightly coughs. Yes, he eats very slow so as not to choke but I’m so thankful that he can still share a meal with me.
Tip: He wears a manly barbecue type apron to catch his food spills. I felt a bib would be too depressing. Not so much for him but for me. Weird?
Sorry to hear the swallow reflex not "perfect". Hope it stays at this stage for some time yet. You are right to get it checked.
Have you come across "Slippery Sam"? It is nylon and draw sheet size to help slide patients across the bed for turning over, or for making the bed with the patient still in it.
On second thoughts, at present, it might not help you get Steve out of bed - without him sliding onto the floor.
Hope you have a second person able to help you move him. Your physical health is necessary to do what you do!
There are also waistband straps to help you lift him, take the strain off your back, or to hold him upright while being moved. Check these out too, if you don't know about them.
May also be time to look at chair or commode showering if Steve can't manage to stand long enough.
Guess he won't like it, but he may be able to appreciate the need for the change!
I don't need to move him much so if I try and it doesn't work, I just leave him in the weird position such as leaning far out of his chair. I don't have a steady second person but am being very careful. Sara Stedy still works just fine - it's just getting more difficult so I am looking ahead at what to do. I don't attempt to lift him at all and I won't. I have a small build and life will go on when he's gone. I need to maintain my health.
I sound so matter-of-fact thinking that life will go on but I know the void will be great. 37 years of marriage, raising our boys, and now expecting our first grandchild. I can't imagine life alone but it will most likely happen. I wish I knew timeline, don't we all?
We have a built-in shower bench as well as a shower/commode chair. I trust the caregiver to shower Sandy any way he can as he is strong and I know he won't let him fall.
Sandy doesn't complain about using any of the equipment, thankfully, Never has. He's thankful that people are taking care of him.
We celebrated (very quietly!) 50 years of marriage during the week before my love died. Think he was hanging on until then. I know it meant a lot to him.
I went back and read some of your posts. Now I remember. your hubby passed very quickly after diagnosis. You must have been absolutely shocked. And it's been a few years but so very fresh in many ways, I'm sure. Thank you for staying tuned in to this site to help others along in the journey. Hopefully it helps you also.
Jen, I too am going to try to hang on until 50 years. I'm still in early stages but we have only been married 41 years so far. From first falls in 2016 to our anniversary in 2028 is 12 years. Law of averages is not in my favor but if will power helps, then I can make it. It is important to me too.
Yes it has helped me a great deal, in that I hope I have made others aware of what they might miss along the way.
And it has helped the grieving process far more than a counselor did.
No, was not really a shock. Since 2006, he had been "aging" more quickly and had numerous other health problems along the way. I began looking for a common cause that explained his decline so much more accurately than Parkinsons. That had been suggested by his cousin, a palliative care nurse in 2013, long before the doctors began trying to form a diagnosis, and yet I did not feel he showed typical Parkinsons symptoms. I began searching for other possible diagnoses and discovered Parkinsons Plus!
Then, I did not feel they were right and insisted a neurologist be consulted. He made much more sense once he came, and gave me a clearer understanding that made sense to me. He took great pains to show me the MRI picture and explain the 'black holes' that corresponded to my love's failures in movement and cognition. My love was just delighted that he did not have Parkinsons, and did not need to take his pills which made him feel dizzy and nauseous.
At that time, it was clearer to me than to most medics that he did not have long, as every day showed a decline or change. When we left hospital the ward doc in charge said he had 12 months. I was incredulous, and told the silly man so. Bless him, my love died barely a week later.
I think I did not have time to sort out some parts of the process, and that is why I am still here and trying to help others, and trying to appease myself for my inabilities ar the time!
After 3 years of living on my own, making decisions on my own, and beginning to manage life on my own, I am getting ready to put the whole horrid process to bed, so to speak. But still keep popping in here!
So good to connect with the Speech Therapist who has now bench marked current situation.
We found using shorter cups and glasses were helpful so hubby did not tip head back to drink, later everything was through a straw. Often It is small changes that make the difference with swallowing
Love to you both
Tippy
I wolf my food down to pay more attention to getting Larry fed.
Larry has a problem with getting things stuck at the back of his throat not in it. I have been giving him liquid by putting my finger over the top of the straw with liquid in it then in his mouth to help moisten what is in there.
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