Caregiver Burnout Update
About This Page: This is a discussion on Caregiver Burnout Update within the Vacationing Your Way: Your Special Needs, part of the PassPorter Community - Message Boards and Forums; I thought that it would be appropriate to let you all in on the somewhat good news that I and ...

LisaJ · 03-03-2004, 05:40 PM

I thought that it would be appropriate to let you all in on the somewhat good news that I and my husband received.

He was able to go to NIH (Nat'l Institutes of Health) for a study on his symptoms. After three and a half long years, we finally had a doctor who believed that he was ill, knew that he was suffering, and actually FINALLY told us why he had such difficulty with his throat (symptoms including choking, throat closings, spasms, severe problems with initiating a swallow, g.i. motility, heart rate, etc). She deduced that he had cranial nerve damage and that it was definitely neuromuscular in nature. She was positive in her findings.

We are so relieved and my husband said that he now finally feels validated. We had brought up this cranial nerve theory to the physicians over two years ago, but they always dismissed it, or there ego got in the way. We went to the best physicians all over the country.

There is no magic pill, and neurological healing is painfully slow. He will either get better over the years, or time will tell. But at least we finally know something.

I feel like a weight has been lifted off of my shoulders. He is still sick, but we can focus now on a particular path. Even though my husband wil not be able to go, I think that a WDW vacation is now a definite for August!

Thank you all for encouraging me to take time for myself and listening to me. I know that you all understand the "physical" trials and tribulations.

**stonewall** · 03-03-2004, 05:59 PM

How wonderful, Lisa!

Here's hoping that now you and your family can get down to healing,feeling better and planning a spectacular WDW trip.

Teddysmom · 03-03-2004, 09:36 PM

Lisa, That sounds great. I am so glad your DH finally got someone to listen to him and acknowledge his illness. He must be so relieved that he is finally being taken seriously. I am happy that you at least know what you are up against. I will keep you guys in my thoughts and hope for the maximum amount of improvement for your DH. I am so glad you are feeling better about your upcoming trip. You definitely deserve it. Have fun planning.

**rescuesk** · 03-04-2004, 06:16 AM

Lisa,

Finding a doctor to listen and believe is such a relief. I went through this with my Dad's neuropathy, but we found a better doctor in four onths. It wasn't nearly as long as your ordeal has been.

Please hang in there! Enjoy planning your trip. You will have a wonderful time, and now that you have a direction to go in with your DH, it will make your planning easier!

Sue

suziem · 03-04-2004, 09:19 PM

Lisa, I am so happy about the doctor and the results! That's great news! Have a wonderful trip in August and let's hope more good news to come!

03-03-2004, 05:40 PM	#1 (permalink)
LisaJ Community Rank: Globetrotter Join Date: Oct 2003 Location: Virginia Posts: 3,470	Caregiver Burnout Update I thought that it would be appropriate to let you all in on the somewhat good news that I and my husband received. He was able to go to NIH (Nat'l Institutes of Health) for a study on his symptoms. After three and a half long years, we finally had a doctor who believed that he was ill, knew that he was suffering, and actually FINALLY told us why he had such difficulty with his throat (symptoms including choking, throat closings, spasms, severe problems with initiating a swallow, g.i. motility, heart rate, etc). She deduced that he had cranial nerve damage and that it was definitely neuromuscular in nature. She was positive in her findings. We are so relieved and my husband said that he now finally feels validated. We had brought up this cranial nerve theory to the physicians over two years ago, but they always dismissed it, or there ego got in the way. We went to the best physicians all over the country. There is no magic pill, and neurological healing is painfully slow. He will either get better over the years, or time will tell. But at least we finally know something. I feel like a weight has been lifted off of my shoulders. He is still sick, but we can focus now on a particular path. Even though my husband wil not be able to go, I think that a WDW vacation is now a definite for August! Thank you all for encouraging me to take time for myself and listening to me. I know that you all understand the "physical" trials and tribulations.

03-03-2004, 09:36 PM	#3 (permalink)
Teddysmom Community Rank: Jetsetter Join Date: Oct 2002 Location: Massachusetts Posts: 2,109	Re: Caregiver Burnout Update Lisa, That sounds great. I am so glad your DH finally got someone to listen to him and acknowledge his illness. He must be so relieved that he is finally being taken seriously. I am happy that you at least know what you are up against. I will keep you guys in my thoughts and hope for the maximum amount of improvement for your DH. I am so glad you are feeling better about your upcoming trip. You definitely deserve it. Have fun planning.

03-04-2004, 09:19 PM	#5 (permalink)
suziem Community Rank: Traveler Join Date: Jul 2003 Location: Virginia Posts: 433	Re: Caregiver Burnout Update Lisa, I am so happy about the doctor and the results! That's great news! Have a wonderful trip in August and let's hope more good news to come!

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