All,
Both my Son-in-Law and Daughter-in-Law have recently been diagnosed with MS. I'm looking for information. Any thoughts!
Bob
Bob,
My wife who passed away on 14th October had MS since 1989. She was 44 when diagnosed. She was working at a London hospital when diagnosed and continued working for about two years before she needed crutches to walk. She was medically retired and was soon in a manual wheelchair by which time she had to give up driving because she did not have enough feeling in her feet to operate the pedals safely.
In 1995 she got the first pressure sore on her buttock, a result of sitting in a wheelchair all day long. At the same time she was hospitalised for the abscess it was decided that a urostomy would be the best solution to her bladder being unable to hold her urine. That hospitalisation took 5 months. Similar abscesses occurred in 1998 and 2001 with long hospital stays.
In about 2001 she was issued with a power chair and, about 4 years ago, an even more adapted powerchair.
Three years ago she developed a large wound on her right thigh which never healed and this year it needed surgery which meant that since February she was confined to bed 24/7. This resulted in a huge pressure sore on her right buttock which, eventually required more surgery from which she never fully recovered.
We had a good 20 years together after diagnosis and, despite her disability, we were able to do lots of things until about four years ago.
I know others who have survived MS for much longer and some who did not make it for anywhere near as long.
Margaret's MS was never remitting so she did not qualify for the interferon treatment which I know has helped many people to live almost normal lives.
The severity of MS varies so much between people that I would not even consider predicting any outcome, all I can say is a good neurologist is essential.
There are many supposedly magic cures out there and most of them I would classify as snake oil.
Kind regards,
John
No blood relationship however DIL father had MS.
I have yet to see any real evidence that there are any hereditary links to MS.
John,
Thanks for sharing your experiences. Maybe someday they'll find a cure.
Dear Bob,
I'm sorry to hear about the illness of your SIL and DIL. I haven't any gems of wisdom about MS, but if they are employed, it is probably worth thinking very carefully and deeply about if /when to let any coworker or employer know about their diagnoses. While there are laws (e.g., ADA) to protect people who are disabled or perceived to be disabled, it is often extremely difficult to prove that illegal discrimination was the basis for job termination even in a better business climate.
I would also urge someone do some investigation and thinking about their long-term disability insurance. If they currently have LTD through their employer, it is important that they understand their insurance before leaving their job, including being laid off, not just quitting. If they do not have LTD, they might want to look for a job that does, including government work. LTD insurance through an employer is not necessarily more advantageous than individual LTD, but it might not be possible now for them to obtain individual LTD insurance. It might be available through some kind of alumni or organization group they qualify for, though. Someone needs to look into these things now so that plans can be tucked away for whatever proves to be the situation if there is a change of employment or a condition of disability develops.
It's the type of diagnosis that most people do not manage to just seamlessly incorporate into their lives overnight, so it might be helpful to speak with a clinical psychologist about their distress and feelings, as well as about how to approach reducing the amount of stress in their lives and manage stress in the most helpful way possible for their health. Doing this from the start can help avoid the common problems when the strain of putting on a brave face or other ideas about how to cope lead people to damaged relationships, isolation, and drinking, etc.
Hoping both your SIL and DIL will be able to get all the help they need,
Paula
Paula,
SIL is employed by Koch Industries which has been very supportive. DIL is recently unemployed. LTD is a valid issue and needs to be explored further. ADA laws can be very difficult to prove. It is probably not worth raising the issue with DIL at this point.
There are a few positives in the bad situation. Both now know what ails them. DIL thought she might be going crazy. Also, DIL father had MS so this is not entirely new to the family. Medical science has come a long way, e.g. MRI's.
I do appreciate your comments.
Dot
Life isn't about waiting for the storm to pass; it's about learning to dance in the rain.
--Anonymous
Dot,
If I may just add a little to what you said. Remission and remitting seems to offer a better choice of treatments than progressive.
As far as progressive is concerned it seems that the older the person is when first diagnosed the slower the progression. We have met too many younger people with MS who, sadly, had a short life after diagnosis.
DIL is late 20's, SIL is late 30's. Let's hope they are the exception.
From our experience there does not seem to be any sure way of predicting the outcome.
One of the doctors Margaret worked with had MS for many years and only needed a walking stick to help her balance. One of our sons teachers had very bad MS for many years and, one day, it went away. We saw her at the hospital for her neurologist appointment and she was walking almost normally. The previous time we saw her she was struggling to get along with two crutches.
It is a most unpredictable disease.
Kind regards
The worst of it is the grandkids. DIL has two daughters 1 and 3yrs old. SIL has 2 daughters and a son. The one year old, sits and smiles, never cries and has no idea of what is in store for her. It just breaks your heart.
