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Partner diagnosed with MS
APODionysus
Registered User regular
Registered User regular
So Penny Arcade friends, I’m looking for a little advice. I’m hoping the wide awesome net this place casts has people who can give me some help. My longtime girlfriend (10 years) has been having strange health problems off and on for a while now and as of yesterday, we finally got a diagnosis:
Multiple Sclerosis
She’s going to seek a second opinion, because that’s only prudent, but the neurologist was pretty definitive. She will be started on medication just as soon as she gets a blood test for ... it was either kidney or liver function I *think*... to make sure the meds would be ok, while she sets that up.
I guess what I’m looking for from you folks is: How can I, as her partner, help? What can I expect and how can I support her in this difficult time? What will she need from me?
Multiple Sclerosis
She’s going to seek a second opinion, because that’s only prudent, but the neurologist was pretty definitive. She will be started on medication just as soon as she gets a blood test for ... it was either kidney or liver function I *think*... to make sure the meds would be ok, while she sets that up.
I guess what I’m looking for from you folks is: How can I, as her partner, help? What can I expect and how can I support her in this difficult time? What will she need from me?
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In both cases it comes in good periods and bad periods. At first the the help you’ll be providing will be finesse motor tasks (opening jars, sorting small items, cleaning their weed). Hopefully it doesn’t progress more than that. If it does you may have to drive them, install handicap bars on the shower and toilet, get a shower stool. Even then there will be good periods.
Neither of the people I know with MS are in wheelchairs. But I’ve heard in severe cases that it can be a possibility.
You can also get general helpful tools like jar lid grippers. Maybe look into reducing sharp corners and edges and tripping hazards.
There should also be online guides and/or communities you can look into for this, though I'm only aware if them in passing.
National Multiple Sclerosis Society
National Institute of Neurological Disorders and Stroke
Multiple Sclerosis Foundation
Genetics Home Reference
Don't know your knowledge background, but the big takeaways that a layman should know are:
- MS is (probably) an autoimmune, neurological disease
- Symptoms usually vary not only between people, but between attacks. Whatever her symptoms were before may not be anything like what they might be the next time it acts up
- These symptoms can not only include physical functions, like muscle strength and bladder control, but mental functions as well, like mood and memory
- Commonly, increased heat makes MS symptoms worse
- There are different kinds of MS. There is the most common form, relapsing-remitting MS where you get flare ups but they go away in between attacks. In every other type, some or all of the symptoms may not go away. Relapsing-remitting MS can change into one of those types
- MS is not a fatal disease and people can live with it for a long time
- MS is treatable. Treatment can relieve flare ups, and different treatment can prevent them and improve quality of life. The sooner they are started, the better. These treatments basically calm down the immune system, and your doctor can discuss these side effects with you.
- Pregnancy: absolutely possible, but a genetic counselor may be able to help with the decisionmaking. Many MS drugs are contraindicated in pregnancy, and your doctor will help navigate that.
The bolded item is something that you should know even if you don't understand all of this. MS can present in insidious ways: numbness, tingling, muscle weakness, vision changes, balance problems, speech or communication problems, bowel problems, bladder problems, problems with sex, and difficulty with attention, concentration, memory - thinking, basically. And mood changes, like depression or anxiety, some of which is a normal response when dealing with a serious medical issue, and some of which may be due to the MS. It's an unbelievably tall order, but if you can sort out what symptoms are due to MS and what is just baseline personality and the happenstance of life, that's as big an asset as any doctor can ask for when managing MS.
Doc: That's right, twenty five years into the future. I've always dreamed on seeing the future, looking beyond my years, seeing the progress of mankind. I'll also be able to see who wins the next twenty-five world series.
My partner also has MS. She was diagnosed a month after we got married, and we went through 6 months of despair, looking back on it now. Her symptoms started with peripheral blindness and extreme lethargy, to the point where she could not drive or go to work for quite a while. After fully understanding what heat was doing to make things worse and making some other adjustments, she managed to recover fully. It took about 1.5 years, but she eventually found the new normal in life. She is one of those rare cases in that she has not had a full relapse in the 10 years of managing MS.
That being said, she self-administers a shot every other day, and there have been other medical complications along the way. At one point on the recommendation of her neurologist she switched medication, which we believe contributed to a few nasty symptoms including a seizure. Back on Rebif now, she is ok. She would say to make sure you are well hydrated, as that can help with heat management and any number of other symptoms. She also advocates for staying physically active, and is a strong runner these days.
Absolutely one of the hardest things to manage is medical insurance and care. She is extremely diligent about taking notes of conversations with insurance and care providers with names, numbers, confirmation, and whatever else. There have been several instances where she nearly runs out of medicine because someone forgot to send a reimbursement form somewhere along the extremely long chain. Diligence is painful but it can pay off. My wife has found great support through a group called MS Lifelines.
For you, take care of yourself. You can't take care of a partner to the highest degree unless you are in good enough condition yourself to take that on. If you are sure you can't provide the support they may need, seek professional help. As has been said, your partner's symptoms may present in vastly different ways, and new things may arise as the medication settles in and the weather changes. The best thing you can do is listen in earnest. There often isn't a solution for everything that comes up, but listening goes a long way in support. For my part, when I was a much more active member of these boards 10 years ago, the PA community was very supportive. Don't be afraid to be open with your friends, people really do care about your well-being when you put yourself out there in a vulnerable way.
If you have any other questions for me about our experience, please do let me know.