Can someone help me help her?

[1fatcat]

Hello all, my name is Scott. I do not have ms, but my girlfriend does. We have been together now for three years and it has been the best three years of my life! She is one of a kind! She was diagnosed seven years ago and put on steroid treatments five years ago. The steroids seemed to be doing good at stopping the progression up until one and a half years ago.

She has been in need of a walker and wheelchair (depending if we are in the house or out) for the last year and a half. For the last year she has gone through chemo treatment, but shortly after finishing the treatment, things started getting worse.

She now can barely get around in the house with the walker, and our house has too small of doors for a wheelchair to get through.

I'm wondering if there is any kind of treatment that's available that we may not be aware of yet? I'm starting to wonder if she should see a different doctor? I know these questions probably aren't popular here, but I don't know where else to ask.

I'm very mechanically inclined and just started looking at a spare wheelchair we got from my father who had just passed away. If there is any tips or hints for making a wheelchair narrower, I would much appreciate any help.

Thank you.

[lemstar]

Yes, she should see an MS specialist. There are many treatments for MS these days, and I don't think long term use of steroids is typically one of them.

As far as the wheelchair, do you own your home? If you rent, don't landlords need to be in compliance with laws for the disabled, i.e. wide enough doorways?

[maitrimama]

Hey 1fatcat - It sounds like you two are lucky to have eachother. You might try contacting your local MS Society Chapter with your questions. Who knows they be able to help you find a MS Specialist Doctor, info on adapting your current wheelchair or help getting a more compact version, possibly even finding a more wheelchair/handicap friendly place to live. You won't know if you don't ask.

You can look up MS Society on the Internet and then find the chapter closest to where you live. Luck & blessings

[hunterd]

Hello all, my name is Scott. I do not have ms, but my girlfriend does. We have been together now for three years and it has been the best three years of my life! She is one of a kind! She was diagnosed seven years ago and put on steroid treatments five years ago. The steroids seemed to be doing good at stopping the progression up until one and a half years ago.

She has been in need of a walker and wheelchair (depending if we are in the house or out) for the last year and a half. For the last year she has gone through chemo treatment, but shortly after finishing the treatment, things started getting worse.

She now can barely get around in the house with the walker, and our house has too small of doors for a wheelchair to get through.

I'm wondering if there is any kind of treatment that's available that we may not be aware of yet? I'm starting to wonder if she should see a different doctor? I know these questions probably aren't popular here, but I don't know where else to ask.

I'm very mechanically inclined and just started looking at a spare wheelchair we got from my father who had just passed away. If there is any tips or hints for making a wheelchair narrower, I would much appreciate any help.

Thank you.

hi scott, i can`t awnser any of your medical questions, but i know of a few places to find help. sorry if i`m repeating, i didn`t read the other posts. if she is working, try your vocational rehab office for help with structural modifications to your home. call your local nmss office, they sometimes have names and numbers of groups who do modifications. ask if there are any people who will help at your church, often there are. good luck. keep us posted.
as far as the wc, there should should be four set screws under the chair (if it`s an older one. the newer chairs come fixed position).
as far as the question`s popularity, that`s exactly why we are here!

[mjan]

WOW Scott, I admire you for all you are willing to commit to given the struggles this disease can render, not only to the patient but to the caregiver/partner.

My question is that steriods and chemo wipe a person's strength while stripping a disease of its powerful grip. I am just curious to know if its the results of some pretty harsh treatment (though necessary perhaps) she's endured or progression. Maybe it just looks like MS progression. So..with that said, I would recommend someone who does NRT (Autonomic resonse testing). Most MDs do not know of this kind of testing as its out of their training. I had SEVERE fatigue that nearly cost me my life (organ failure) and this specialized nutritionist saved me. Got my strength and health back.

Secondly, there are wheelchairs that are more narrow depends on the weight of the person. One of them is called a transfer chair..not as sturdy but much narrower and fits more easily. Do you own the place you live in?

But I love how you want to help.. of course.. its the reflection of your love for her.. WOW.. what a wonderful tribute to your love for each other.

Hugs to you both~ Jan

[BigA]

Scott,

I don't know too much about treatments at that stage, however I do believe that chemo drugs represent aggressive therapy in MS. You might check out stem cell transplants and definately physical therapy, but after she's done with these treatments which may tax her strength. As for stem cells, I have not studyied them, but I think there are some reputable studies out there.

Your Doctor may not recommend Physical Therapy, but there is definately a branch of it for MS and many people find results.


There are funds and help available. Contact your local MS society, but also the MS Association. They're different organizations.

[knuckle]

I'm wondering if there is any kind of treatment that's available that we may not be aware of yet?

Go to the "Medications" forum and at the top, visit "Useful LDN Links" and start reading.

Low Dose Naltrexone is used by 1000s of MS patients as well as with other autoimmune diseases. It is especially effective in women.

[1fatcat]

Thank you all for the replies. I will start looking into everything mentioned.

She is on SSDI, but it just barely covers her bills. She was only 23 when she was no longer able to work, so her payments are small.

We (the bank) own the house and we have been wanting to move to a single level house, but we would need to find something affordable that has a pole barn. I work from home as a "small time" auto mechanic in the pole barn on our current property. It works out very well, as I'm able to go to work but I'm only 50 feet and a phone call away.

Since I've only been self employed for about a year and her ss payments so low, no bank will even cosider giving us a loan. So we're kind of stuck here for now.

[BigA]

Scott,

someone just posted this in the progressive section. You can search on clinicaltrial.gov and ask around to see if she can take part.

http://www.sacbee.com/2011/11/21/407...dbreaking.html

Here's the tria. See if she qualifies (the conditions are tricky for someone who is progressive and may have had other meds) and whether it's interesting to you.

http://clinicaltrials.gov/ct2/show/N...NA%3AUS&rank=6

Good Luck

BigA

[evaeli5252]

If not yet, consult a MS specialist. I don’t think there is any way to narrow the wheelchair. They come with standard size. Though if you order customized wheelchair, will that be comfortable for your girlfriend be in it? There are agencies who offer customized stuff. Try those out.

[BigA]

Here is a treatment your doctor will not tell you about but may be worth trying.

http://news-releases.uiowa.edu/2011/...1MS_study.html

http://www.youtube.com/watch?v=KLjgBLwH3Wc

[KatieDidNOT]

Scott--What a wonderful man you are...and handy too! If I looked up the word man in the dictionary your name would appear. All I can say is wow, you two are so blessed to have each other.

Do you have a Major University within driving distance...a lot of the big ones have MS Clinics (that is where she needs to go) with lots of trials going on.

As far as the house stuff, talk to your local Habitat for Humanity...they might help you out making your house more "wheel chair accessible" or point you in the right direction. Secondly, if you live near a military installation, or you know anyone affiliated with the military, they do a lot of community service projects and might be able to help you out...they certainly have the expertise. Thirdly, talk to your local churches...even if you don't attend...they have a lot of useful resources. There are community resources that can help you out....you just have to signal for some help.

And lastly, like the others have said contact your local MS Chapter for support and guidance. You both need this.

Good Luck to Both of You--Katie

[Lexie]

Scott, you have touched my heart. I know that if it were not for my husband I would just give up! I am fortunate that I have had a lot of symptons but not a major flair until last year. I am 61. So my children are grown and I have no major responsibilites as you young people do. God has given your girlfriend a wonderful man. I admire you so much! Hope things get better!

[Cat Mom]

Bless your heart for being such a caring person and reaching out for help. One resource that can may be able to help is Easter Seals, at least with help getting around the house.

An uncle of mine who had SPMS needed one of those chairs that glides you up and down the stairs; Easter Seals came and installed it for no charge. My Uncle who used it has since passed away and when he did, they came and removed it, there was no damage.

Another one that also offers the same kind of assistance is March of Dimes.

Lastly, check with your government, here in Canada there is a tax credit you can take advantage of if you need to do renovations make your home accessible.