STROKE NEVER EAT AGAIN???

[signer]

My dad age 71 had a stroke 4/25 on right side. He had speech therapy for about 10 days. They put some type of probes on the outside of his neck to check his swallowing reaction. The dr. said there was no response and that he will never take food by mouth again, just through his j tube. He was speaking one word at a time but now that speech therapy has stopped(dr. said he was maxed out) he is no longer using his voice. Should I believe dr. and speech therapist and not try to make dad use voice? They tried thickened food once and said no go, it was pudding. he swallows when I moisten his tongue with swabb which the staff at the nursing home doesn't do anymore either. Should I give up & accept what I have been told by trained people? His mind is great, he just can't eat so he is losing weight on this feed bag stuff. Any ideas? Someone please help me, my dad is my best friend and I just can't not want to help him to survive.

[caregiver222]

One of the problems in swallow rehab is the lack of understand of the problem and the tremendous time and patience it takes to accomplish the task. When I rehabbed my little patient and returned her ability to swallow I would initially provide her only with a morsal every ten minutes, and that only for an hour (five times), and then a full hour break. The muscles required for swallowing fatigue easily and have atrophied. Think repetitions in the gym. Remember how completely exhausted you were after fify puch-ups. Suddenly your muscles became strained and you not onloy couldn't do another fifty, you couldn't do three, and it took a three weeks for you to get to fifty again. When you strain the muscles required to swallow, you have a formula for aspiration pneumonia. Unfortunately, "force-feeding" is the norm, and it is easier for caregivers to go to a feeding tube rather spend the labor-intensive time necessary to do the job properly.

[Tressa999]

The program is not expensive, but hiring a helper is expensive.  I pay a wonderful, strong helper $10/hr. for 8-10 hrs per day.  I figure if my husband regains some independence this will be cheaper in the long run than maintaining him as an invalid for years on end.

[joesi]

I agree with caregiver222. One should never give up and recovery from a stroke will take patience. There is NO magic pill. What works for one may not work for others. Trial and error can be frustrating. I've witnessed "professionals" give up way too early. Is it possible for you to bring him home or can you spend more time at the nursing home with him? Do you have other family members who can help? Just because he's in a nursing home doesn't mean you can't participate directly in his recovery/rehab. Just be aware though that it will be an everyday thing and for as many hours as you can.

[Tressa999]

Since starting the Vasa program my husband has made noticeable progress in strength and ability to move his own body around on the bed and on the floor mat.  He's also more alert when he's awake, and more asleep at night.  He has never tried to stand or walk since starting Vasa prog, bcs Dr. Vasa says doing these things too early (therefore improperly) sets bad habits in the brain.  She says she'll tell us when he's ready to stand, and we're glad to wait.

Yes, I can transfer him (scooting transfer, not standing transfer), but Dr. Vasa doesn't recommend a lot of transfers.  She recommends he be on the mat, doing the exercises 10-15 min. out of every half hour all day long, so that's what we're doing, except to take him outside into the sunshine once a day.  Sometimes we eat lunch outside once we're out there, go to the mailbox, or chat with a neighbor.  But he's usually not off the exercise mat for longer than 30 min. a day, bcs the exercises make him very tired, so he wants to sleep after lunch rather than spend more time outside.  And his cardiologist (who approved of everything I told him about Vasa prog) says the less time he spends cooped up in wheelchair and the more time he spends moving on the floor mat, the better his edema will get.

When I say I can transfer him, I mean only from bed to wheelchair and vice versa.  I wouldn't dream of transferring him into bathtub without the strong helper I've hired.  He takes a tub bath only every three days, (Don't be shocked.  In his rehab he only got a tub/shower once a week.) bcs a tub bath takes so much time away from doing the exercises and resting from them.  (Difficult transfers into and out of tub, the bath itself, then resting from the exertion of the two difficult transfers.  

I know there are special bath benches for handicapped people, but Dr. Vasa advises against buying adaptive equipment.  She says use that money to pay helper so he can become able to function without the adaptive equipment.  He couldn't do many of the exercises without our helper, since I'm not strong enough, so we really must have a helper.

[caregiver222]

It is impossible to tell if any person will recover. Only the life-force can make that decision. I can state that I have had a great deal of success in rehabing using lots of patience, and that one should never give up. My sweet little 101 year old girlfriend has improved from being comatose and incontinent and completely non-responsive, to learning how to read again, and during the last few weeks she is actually having little conversations! She is no longer incontinent and has learned to walk again.  The did not speak for a number of years and had been given up by one of the top rehab facilities in the nation. She was deliciously eating a full portion of meat lasagna, pea soup, mashed potato with butter, four juices, jello and yogurt for lunch today, all by her little self! What a sweety-pie! The "professionals" were within 24 hours of putting in a feeding tube last year when I stopped them. Twelve months ago she was unable to move her hands, sit up or respond in any way to someone. She would just stare vacantly. Getting her to regain her speech has been difficult, but it has come about. For a long time she would try so hard to make a word but not a sound wouldsome out. Then there was a single garbled sound a day. Final a single word. Then, with encouragement, a try at a sentnence. And finally, more sentences! Yup. And she is a happy-pie, laughing all day long like a sixteen year old.

[lahinva]

It sounds like he is doing great on the program.  I hope he continues to improve.  Is the Vasa program very expensive?

[lahinva]

I have emialed Dr. Vasa, but I have not been able to send her video of him yet.  I am going home this weekend so I hope to be able to do it then.
How much progress has your husband made? Can you transfer him now?

[Tressa999]

To you and all hopeless-feeling posters I suggest reading about the Vasa Program at www.brainstrokes.com, and if you like what you read and if a home program is something you could handle then I suggest that before you give up you email Dr. Vasa and tell her your dad's situation and ask whether her program is suitable for him.  My husband is doing the program now, and although his progress is slow (I doubt he will ever be Dr. Vasa's poster child) he is doing better than he was in rehab and shows every sign of continuing to progress.

[lahinva]

My dad has his stroke on 5/10.  We had a speech evaluation and they also said that he would probalby have to have a permanent j tube.  On the morning he was scheduled to have the tube inserted a different therapist evaluated him and said that he was fine to eat.  He has been eating ever since.  So my view is you should definately get a second opinion.