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BethU

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Well, it’s time for me to unload again about my husband. This will be long. Sorry.

For anybody who remembers, last summer, he developed new symptoms ... collapsing suddenly two or three times a week, being unable to stand or walk (those were the days when I was dragging him around the house on an office chair, as it had wheels, before I got our little red wheelchair to save my back). When he was able to walk at all, he couldn’t lift his feet more than an inch from the ground, and couldn’t advance them more than an inch forward. Plus he’s had memory loss and some cognitive impairment for years, which I have not been able to get our PCP to address..

All his symptoms had started 25 years ago with seizures, and tingling and numbness from his rear end down to his feet. The tingling and pins & needles turned into pain and he has had intense chronic pain ever since (despite surgeries, etc., endless stuff). He never had a diagnosed.

When the new symptoms started last summer, I thought of MS, as that’s what the neuros had thought all those years ago, and some of his new symptoms seemed to fit.

But we saw a neuro a couple months ago, and he said at the end of that first visit “Parkinson’s with dementia.” So ... he’s on carbidopa for the Parkinson’s and aricept for the dementia. His gait and balance have improved considerably, although he is still weak. It will take a couple more months to see the effects of the aricept.

So, happy ending, right?

Wrong. Since well before those episodes last summer, he has been complaining that he doesn’t feel “right” ... he feels extremely sick. He’s nauseated, can’t eat more than a few bites (literally), and feels absolutely miserable, lousy, and wretched.

I didn’t know what to do about it. There was nothing specific to point to except nausea. I talked to the doctors, the case manager, etc., and they only suggested stronger nausea med.

Anyway two weeks ago, we had a follow up appt with a kidney doc. (another story), and it is the only time I have EVER seen a doctor act alarmed. Turns out Paul has lost another 12 pounds in the last two months (he’s 5’8” and usually runs about 140; now he’s 110 and truly looks skeletal). When the doctor came into the exam room, he stared at Paul, and said, “What’s happened? What is going on with you? You’re emaciated!”

He examined Paul and grilled me with questions, then said we had to see our PCP right away. I told him we had an appointment the next day, so he wrote out a note on his prescription pad for us to give her, telling her to get Paul to a gastro specialist stat ... he suspects stomach cancer.

I had never thought of that, although Paul’s brother died of stomach cancer, and (I’ve learned since) having a first-degree relative with stomach cancer is a big time risk factor. And unfortunately, his symptoms do fit stomach cancer.

So we saw the gastro guy, who said he didn’t think it was cancer ... he thought the nausea was from the meds Paul takes, which I have considered, but his feeling sick goes way beyond that. And Paul is taking really heavy-duty anti-nausea meds, the stuff they give chemo patients before they start a chemo treatment. And these meds do not cut down the nausea when Paul tries to eat. Getting down a half a banana is a major achievement. Anyway, the gastro guy said he will give Paul an upper GI exam “to give me peace of mind.”

So the test will be on November 20. I have determined not to let Paul lose any more weight. Since he can eat only two or three bites before the nausea overcomes him, I’m giving him 2 1/2 ounces of Ensure every hour. He’s spending about 23 hours a day in bed, as he is usually too sick and weak to get up, so I wake him up and have him drink a tiny glass of Ensure. This way, I manage to get 4 cans a day in him, which is 1,400 calories. Not enough to keep an active man going, but I’m hoping enough to keep him from losing more. I also make little meals for him, and if he can eat a half sandwich, or a little protein at dinner, that’s all to the good.

So ... more waiting. At least, we are getting instant OK’s from the insurance company for tests and consultations, and have great support from our insurance case manager and also my ALS rep, who knows how to work the medical system better than anyone I’ve ever met.

3 1/2 weeks more, and maybe we'll have an answer.

Thanks for letting me unload!
 
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Zaphoon

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Wow, Beth! What a situation to have to deal with!

I'm speechless... You have too so much to deal with and the 3 1/2 week wait. I sincerely hope they quickly find what is troubling your husband and arrest it!

Very acceptable rant, by the way! Very well written. I give you an A on it!:-D

Zaphoon
 

gimpydad'slady

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Oh my BethU. I will say some extra prayers for you and your husband. You have your own buffet going!
 

brendapals

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Joined
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any
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any
Oh my goodness, BethU,

I am also left speechless at this very moment. I pray that you and your husband be blessed with God's grace over the next 3-plus weeks.
And you rant anytime, I'd consider you a first class ranter!
God bless you always,
hugs,
brenda
 

lydia

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Beth,

I am so sorry to hear what you and your husband are are going through; so much in one family! It just isn't fair. To think that you give so much HERE while in the midst of that at home...You are truly remarkable.

Thinking of you,

Lydia
 

rose

Extremely helpful member
Joined
Mar 29, 2008
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2,879
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7/2008
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Maryland
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Beth,

I know you have to wonder how much you can take, what new thing is going to pop up and smack you. Your love for your Paul is so apparent. That is something you can be sure that he understands.

I'm encouraged that you have someone pulling for you with the health insurance angle. Thankfully the specialist is not thinking it is cancer.

Please know that you've got a friend pulling for you both, over on the opposite coast. (((((( hugs ))))))
 

sdsyd

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Hi Beth-

Sending a hug from South Dakota. I can't imagine what you are going through. Please keep us updated and know we are praying for the both of you.

Love,
Cindy
 

crystalkk

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Beth,

I often wonder how you do it...I will be praying for both you and your husband.
 

Thumbs Up

Active member
Joined
Nov 22, 2007
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95
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Lost a loved one
Country
ca
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BethU, What a lot you have on your plate. You and your husband are in my prayers. God bless you. I would love to give you a big hug.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
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10/2003
Country
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On
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NW of Toronto
Don't sweat it Beth. You deserve a rant today. This a support forum. You need support? We have it. Take care.

AL.
 

BethU

Extremely helpful member
Joined
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PALS
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Thanks, all. This forum does feel like "family," and you help so much by being here.
 

Thumbs Up

Active member
Joined
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95
Reason
Lost a loved one
Country
ca
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Ontario
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Northern Bruce Peninsula
I don't respond a lot because sometimes I just don't know what to say. But I read the posts and my heart aches for what you are going thru. I hope and pray for a cure for this awful, horrible disease. I remember my first encounter with ALS. My aunt Vina, I was 5 years old. I recall asking my mother " What is wrong with aunt Vina? All that was left was eye movements. It was so scary. That was in 1955. She passed away in 1957. Then her son was diagnosed with ALS. He passed away in 1988. This was in New Brunswick, my mom and dad went to the funeral. At that time my mother was having problems walking, she was diagnosed in 1989. My mom passed away in 1992. Two months later my sister Roberta was diagnosed. She passed away in 1996 at 49. At the beginning of this year my cousin passed away with ALS. They are in the March of Faces. Melvina O'Neil, Jerry O'Neil and Raymonde Godin. I did notice a post for the March of Faces. I haven't had a chance yet to put my dear mom and sister on the registry. But I will. God bless all of you, you are all amazing.
 
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BethU

Extremely helpful member
Joined
May 11, 2008
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Reason
PALS
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05/2008
Country
US
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California
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Los Angeles
Thumbs Up ... I'm so sorry for your family's losses. That is tragic. There is a thread on here about Family ALS. It is so hard to think about whole families decimated by this disease.

Blessings ...
 
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