aphroditeskiss1

My dad has MS and has had it for about the last 10 years. Both of my parents are very hesitant to talk to me about it and the information I've found in books and online has all been very medically oriented and in way too much detail for me to understand well. Is there anyone who can help me with this?? I don't know how I can help my dad until i know more about this illness. Thanks.

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"You always said destiny would blow me away. But nothing's gonna blow me away"- Something Coporate
" I do not pop pills! I take them and I eat them..."
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apeman

i know a little, but don't take anything i say as 100% true ... maybe use me as a backup if you don't get any replies from someone who really knows what they're talking about, but feel free to PM

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thebeat

I would suggest picking up Neil Cavuto's book "more than money" he suffers from the same condition, he's the fox new channel's business guy, its a good read..

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maleficent

parents want to protect their children, even adult children, from the bad things in this world, a few years back.

The only thing I know of MS, is what I learned from watching the West Wing.

But... on a different note...

You don't need to know about the disease to "help" your dad. He's probably got enough people fussing over him and worrying about him, maybe he'd like some normalcy.

Do some fun stuff with him...

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aphroditeskiss1

Because of the degenerative aspect of the illness, there's really nto much I can do with him. It's hard for him to do alot of things and he gets tired easy. I'm there as much as I can be, but I want to know more about it.

__________________
"You always said destiny would blow me away. But nothing's gonna blow me away"- Something Coporate
" I do not pop pills! I take them and I eat them..."
- Foamy's friend

gonadman

To characterize MS briefly, It is a demyelinating disease- a degeneration of the myelin sheath which encapsulates nerves

Symptoms mainly involve flairs of neurological deficits that vary greatly in severity, persistance, location and disability.

Mainstay of treatment has always been pulsed doses of steroids or chronic daily steroids for more severe presentations, although newer drugs have been developed recently.

The best help you can give your father is understanding and support. For a previously healthy man, the psychological toll is just as devastating as the physical toll

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-Carlos Castaneda

Untitled

There are 3 main types of MS.
One is characterized by intermittent attacks of weakening of the muscles. After the attack is over, the person is no worse off than they were before.
The second type has the same attacks, but after each attack the person is weakened.
The final type is a constant decline.
Thats a really rough overview for you.

On a more personal note, my summer job this year is to help people with MS, cerebral palsy, or spinal cord injuries and the like. Basically, what I do is help them out with daily activities that they cannot perform on their own, ie getting out of bed, getting dressed, going to the bathroom, making meals, etc. We do all this in their own home; these people are extremely independent. If your dad has one of the last 2 types, you and your mom could help him out for quite a while, but help is available so he could still live at home when/if he becomes worse.

If any of this was helpful, or you wanted to know more, feel free to pm me.

Good luck.

*edited because I really can spell, I promise*

onetime2

I’m sorry to hear this and there’s no reason at all that you should be in the dark about this but be aware that plenty of people live long and very prosperous lives while suffering from MS. There are quite a few celebrities that live with the disease including Montel Williams, Teri Garr, Annette Funicello, David Lander (Squiggy from Laverne and Shirley), Richard Pryor, and several others. The range of debilitation is wide with some patients experiencing a single attack never to suffer another all the way to complete disability.

Others have talked a bit about the disease but it really is quite complicated and even the experts disagree over the cause, progression, and efficacy (effectiveness) of treatment options.

As mentioned previously, MS is related to the degradation of the myelin sheath (a fatty substance that covers nerve fibers). There are really four forms of MS.

Relapsing-Remitting: This is the most common form with approximately 85% of diagnosed patients having it. It involves periods of flare up followed by periods of partial or complete recovery.

Primary-progressive: A slow but consistent worsening of the disease. This is relatively rare consisting of only about 10% of patients.

Secondary-Progressive: Initally looks just like the Relapsing-Remitting variety but then steadily worsens sometimes having flare ups and sometimes experiencing remissions.

Progressive-Relapsing: Continual advancement of the disease with clear exacerbations (flare ups). The patient may or may not experience recovery from the flare ups. This is also relatively rare with only about 5% of cases being this form.

Some other info that you may find helpful:

The myelin that is destroyed is being destroyed by what’re known as T-cells. The attacks by the T cells damage the nerves enough that they can’t do their jobs. Diagnosis of MS is often difficult since the exacerbations can come and go and there can be years between episodes. Often a preliminary diagnosis may be given with confirmation coming in the form of an MRI of the brain. If it is MS the MRI will show what are called lesions. These lesions are basically scars left by the disease (sclerosis means scarring).

Now, there are treatments for the disease. While they are not cures, there is ample evidence that they are disease-altering drugs which can delay or minimize the effects of the disease.

Working for one of the companies that manufactures a drug for MS has meant learning a fair amount about the disease. Currently there are four Rx treatments approved for the disease in the US. All are very expensive (> $10k/year) but they are covered by insurance and if no insurance is available there are programs that supply free drug to those who can't otherwise afford it. These programs are sponsored by each of the pharma companies participating in treating the disease. My company produces Betaseron, which is an interferon (it increases the resistance of surrounding cells to attacks by viruses). The other drugs in the market are Avonex, Copaxone, Rebif, and Novantrone.

This link details the treatment options, the regimens involved, and their side effects:

http://www.nationalmssociety.org/Bro...-Comparing.asp

I know you’ve already done some research on the web but here are some that you really should be aware of:
http://www.nmss.org

http://www.mspathways.com

If you take nothing else away from this post, please call this number 1-800-788-1467

This is my company's Beta Nurse hotline. By calling this number you will be put in contact with a registered nurse who has far more knowledge than anyone that you're likely to run into on the internet. She (I believe they're all women so I'm not trying to be sexist here) is there to answer any and all questions in terms that you will understand. She's there for the support of anyone who is affected by MS. Please take the time to call it.

If you have any further questions that I might be able to help with feel free to PM me.

Good luck and please let me know how your search for information progresses.

--Paul

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aphroditeskiss1

Thank you all for the information and support that has been given. I greatly appreciate it. I feel that I've been in the dark about this long enough, and my parents won't asnwer my questions about it, so I really thank all of you who have taken the time to respond.

__________________
"You always said destiny would blow me away. But nothing's gonna blow me away"- Something Coporate
" I do not pop pills! I take them and I eat them..."
- Foamy's friend