shirley-cypher
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My late husband struggled with a combination of dysphasia (swallowing problems) and dementia. Both tough alone but combined really hard. It got worse after he broke his hip last June. Downhill from then on. He was 88. As you get older take precautions about falling. In April he would go outside and fiddle around without his walker. After breaking his hip he was wheelchair bound because he would keep falling. Did keep me on my toes thou
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My husband has an upright walker which is just great. He uses it when he feels unstable. He is 87. It easily folds up to put in the back of our Outback. Very light weight. There are a number of brands on Amazon. With Parkinson’s he still has the forward leaning posture but not like a regular walker he can watch where he is going and stop and sit down on it if he is tired. We were walking about a 3rd of a mile with it about every other day until he came down with sepsis due to dysphasia that kind of knocked him back some but now getting his stamina back. Most of the upright walkers are of the same design basically that you see on TV. We paid about $245 for his in 2019. As an aside I paid $80 for a standard walker in Medford Oregon when I broke my thigh bone 500 miles from home. The difference between upright walkers and standard walkers is huge. Still have the standard walker but Joe won’t use it. Understand medicare pays about 50% with a doctors recommendation. But I didn’t think about that at the time.
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My husband has PD he is 87. We have been going to MOG (medically orientated gym) which is run by our local physical therapy group. There are MOGs in other areas (we are in Idaho) Our ph group includes a therapist who specializes in Parkinson’s. The way it is set up is you pay a fixed amount per month and can go as often as you wish. They do an initial evaluation and design a program specific to your needs. There is always someone there to help you if necessary. Every 3 months do a reevaluation. In Joe’s case a real bargain as he has dementia and needs to be guided through his programs. No increase in price. So basically has a personal trainer. Covid was a real set-back for Joe as they had to close for a while. But now open again and working on gaining back what he lost due to no meaningful exercise. Do a search online for MOG to see if there is any MOGs near you. They are spreading across the country. Twin Falls has the only one in Idaho. (aren’t we lucky)
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The main thing the xylitol will help with is preventing the aspirational pneumonia by killing the bacteria in the mouth. however if you are having to thicken your liquids (water) you can make your own flavored simple syrup with it or use sugarless simple syrups found in the coffee section of grocery stores such as Winco and Fred Meyers. I have a hard time getting my husband to drink thickened water and this makes it taste much better. Unfortunately the various medical disaplines don’t compare notes much. i.e. dentists know that xylitol kills germs in mouth and helps prevent cavities but don’t let speech pathologists know that it could help prevent aspirational pneumonia better (in my opinion at least) than regular mouthwash because you can use it so many ways throughout the day. It of course doesn’t do anything for curing dysphagia need the speech pathologist for that. I’m happy to be able to help others work out ways to make dysphagia easier to deal with. In about 2 weeks will be doing another fluid xray video to see if he is still silent aspirating with food and drink. Because this is the 2nd goaround with pneumonia plan on continuing to use xylitol either way.
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Jo most of his pills are supplements. i.e. -Acetyl Cysteine, turmeric, D3, B12, stool softener, allergy pill etc. its just been 2 years since diag but neuralogist says he has probably had it for 9 or 10 years.
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Jo I am sure my husband feels the same way total meds and supplements a day is 29 taken 4 times a day.
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Forgot to say his mouth stills hangs open most of the time. lol
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My husband used too before diag. meds and speech therapy stopped it. He had asperial pneumonia when he was diagnosed. (spent a month in rehab due to pneumonia and pd.  Was on liquid diet then soft food when released. went on to be able to eat any thing. The speech therapy was major I think in stopping the drooling as the exercises strengthened the mouth and throat muscles. He had serious drooling before diag. Thought it was old age (86). Ask your doctor about speech therapy.
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Twin Falls IDaho (where Evel Knievl (sic) “tried” to jump the Snake River canyon in his rocket powered motorcycle.
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My husband sees his neurologist twice a year but in contact with him through the hospital patient portal whenever I have a question. Works real well. Joe is 86 was diagnosed in 2018 while in the hospital with aspirational pneumonia. According to his doctor he has probably had it for 9 or 10 years. Has some dementia. All things considered he is pretty stable.
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After discussing NAC with Joe’s neurologist (primarily interested in it for obsessive/compulsive behavior) he is taking 2 600mg capsules 4 times a day. Interestingly enough it not only helped the o/c he also started speaking more clearly with less searching for words. This was almost overnight and initially took 300 mg 3 times a day. Dr suggested upping it to the 600 mg 3 times a day as that was what they were using in a trial I had asked him about. I just recently upped it to 4 times a day. Not sure if that is making a difference. When I ran out of NAC and it was about 3 days before I got more there was a marked difference.  He was definitely down. Plan to deliberately withhold the NAC for about 3 days in the near future to see if the same thing happens.
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I forgot to say “do NOT cut timed release meds in half”. If the pill has a line on it on one side you can safely cut it. If in doubt ask pharmacist.
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In the morning husbands meds seem to take 1/2 hr to an hour. He is a basket case in the morning barely able to take meds and usually just lays back down until breakfast at 9. Sometimes he does get up and dressed earlier.
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My husband has advanced stage PK trouble walking, talking, memory(sound familiar?) We go to MOG (Medically Oriented Gym). Most of them are in the eastern US but we are fortunate to have the only one in Idaho in Twin Falls. We go 3 times a week. Joe basically has a personal trainer who has physical therapy background and the Therapy group CPR who runs the MOG has a Parkinson’s specialest. They set up a unique routine to meet his needs. With MOG we can go as often as we want to for a set price. Really notice the difference if we miss a couple of times in a row. Also bought an upright walker for when we need to walk very far like grocery store or Costco. It seems to carry over to improved (temporary) walking around the house.
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consider an upright walker. It helped my husband a lot. The upright walkers help you to walk upright plus they have a seat if you get tired. Good for shopping. our street (rural subdivision deadend) doesn’t have sidewalks so we were able to walk on the edge of the pavement with no problems for a quarter mile. The uprights usually have larger wheels