Last reply 6 days ago
James Plummer

I am very frustrated by my condition. I have secondary progressive MS. What is the point of going to see the Ccnsultant and all the hassle involved when they can do so llittle that is useful. Surely Skype or FaceTime could save time wasted by face to face meetings? Making kitchen adjustments for a wheelchair user is not a priority for
the MS Society.. What is?

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jen1973g
1 week ago

If your not happy write to them I did a lot better care after be constructive not blaming


peterfrancis
1 week ago

@jamesplummer

I am also an SPMSer and have often thought of the same thing, why go to these meetings when there diddley squat that can be done. Being asked the same questions every time gets annoying very quickly.


jamesplummer
1 week ago

I take the point made by jen1973g but i was afraid they would not like to be confronted with something so obvious. I’ll try and make a suggestion. That does not address my point about the MS Society. The issue of needing to make physical adjustments after starting to use a wheelchair I think is huge and something that the MS Society could usefully address.


jamesplummer
1 week ago

I would like to holiday abroad but am constrained by the cost and the availability of carers overseas.Has anyone else encountered this same issue?


itsmewithms
1 week ago

“carers”?


jamesplummer
1 week ago

Carers do not need to medically trained they must however be able to lift me, drive and push a wheelchair. They could be referred to as ‘Personal Assistant’.


itsmewithms
6 days ago

Thanks for the definition. I am more acquainted with the term “personal assistant” or PA.

Regarding the MS society I have relied very little on them on a personal level. I have been mostly unaffected by my MS until this year. I’ve been in the RRMS stage since diagnosed in 2005. A few relapses that were quickly resolved with no apparent loss of function. Now this year I am starting to note a decline and my Neuro and a second opinion from Mayo clinic (Rochester MN) feel that I have moved to SPMS and I am starting to recognize and feel the impact of MS in my life.

I went to one MS society meeting as it was so close to my workplace and the subject (DMT options) was going to be presented by a recognized expert and it was interesting as there were so many new options coming out at the time or expected. I believe I was on Copaxone at the the time which was one of two options available 15 years ago.

The other attending the meeting were very advanced in their symptoms and mostly all in wheelchairs and barely coherent. It was a very sobering experience. I was still very active and working and this was not a group I could relate to. The presentation was the highlight of the evening but I resolved not to go to another meeting as it was very depressing.


itsmewithms
6 days ago

I recommend that you do contact the MS society about their message and communications. As I said I haven’t relied on them very much but the one meeting I went to was really a turnoff.

Discussions and articles about how to prepare for progression of the disease would be very helpful for me. I know maybe they want to put on a big smiley face but the reality is that we should be prepared for the future.

Discussions and articles on:
“Building or looking for housing that is adaptable to future decline” would be good. I thought about a lot of things when we built our house. Nice straight lines that are wide enough for a wheelchair to move through the house with wide enough halls with few cornerings. The master bedroom is on the main floor as well as the laundry and an area that can serve as a living room with a TV. My office is also on the main floor. There are rooms on the other levels that I now enjoy but I could manage without them. They are more occasional use like for sewing. The basement spaces are more important like for exorcise and movies/media but a stair lift could be put in the stairway if needed.

“How to approach your workplace about accommodations” in line with the US Disability law. What we can ask for and when. What do they have to and not have to do.

“Measuring Cognitive Decline” It is very hard to get into a neuro psych. I just had to wait two months to get into the Mayo Neuro Dept but they couldn’t line up a psych person that fast so that follow-up appointment is late in November so it was a 5 month wait. I talked to me local neuro to see if they could set one up sooner and they said to keep that appointment, despite the drive, as it was the soonest I could get.

“Transportation by land or air” Good advice on what vehicles offer features that MSer’s will appreciate having like navigation systems, space to store equipment we may need to bring with us, good temperature controls, etc. We may have different needs and priorities than the average consumer.

Your need for assistance for traveling is a great point and would be a good idea for an article. What services will airlines and hotels offer for free or for payment and what is out there to help us that isn’t prohibitively too expensive. I had hip surgeries a couple of years ago and had signed up to be a chaperone on my daughters high school band trip to Washington DC. When it came I wasn’t very physically able but could serve as a set of “watchful eyes” so did what I could. I was surprised how accommodating the tourist business was. For our White House tour they scurried over to me with a wheelchair that I could use and my daughter was there to push it. I used it some and otherwise it was just a handy thing for all the stuff the kids had to haul around as well 😉 Although I was very apprehensive about the trip it ended up going well and I’m glad I had that experience with her. I had been in that area before but never a tourist of Washington DC.


itsmewithms
6 days ago

In summary if you contact them (and given the idea I may contact them as well) is that they should tailor their meetings and communications to which type of MS a person has. Each segment has different needs and interests. Maybe there isn’t enough of a population to have four meetings instead of one so they lump us all together to have enough people at the meeting. But then we avoid the meeting as it doesn’t pertain to us.

They may have ideas on how you can find “carers” for your travel through the network of MS Society chapters. It you want to travel somewhere in their network they may have contacts through members or the chapters on helping you fulfill your dream.

The meeting spaces they find and hold their activities in should be checked out in advance that they can handle the needs of the group that is gathering. I agree that skype or FaceTime meetings are much better for MSers as the technology is there now so that the travelling hassle can be removed and we can enjoy the connection with other MSers and the message of the speaker. I’d definitely get that message across to them. Take you energy into make a change 😉


itsmewithms
6 days ago

I don’t know if you have heard about or followed Dave Bexfield through his travels and treatments but he is very inspiration to me and has great messages out there. Just google him. He has really traveled the world and has PPMS I believe. Just putting the question out to this group on how to travel globally may turn up some good ideas.

Another good article idea (I have so many ideas even though I am “just an accountant” ) would be a global glance at disability laws in other countries.
We know we can expect handicapped parking and bathrooms and accessibility to public places in the US due to law but what about if we travel globally? What can we expect and demand? I think Dave has ran into that in his travels-


itsmewithms
6 days ago

Also curious what you have tried to improve your condition. I have just been classed as SPMS from RRMS and will be moving from Rebif to Ocrevus in two weeks. There are now drugs approved for the progressive forms of MS. Have you tried or considered them? Tried any diet changes? Very curious if you have tried the high Vitamin D protocol or the Wahl protocol. In the past there wasn’t anything out there for progressive MS but there are new advances to be aware of. As I am just transitioning to this stage I am still in the “information gathering” stage.


jamesplummer
6 days ago

I can relate to your observation of an MS Society meeting. With no cure available and since the MS Society take a very pessimistic view of any non-mainstream treatment alternates, I am forced to conclude they together with the pharmaceutical industry they view the condition as a business opportunity. I have always worked in the computer industry where new non conventional ideas are generally welcomed. I appreciate that the medical field is different and proof of the efficacy of a treatment option is essential. Nevertheless, the exclusively medical perspective of MS is depressing, since there is no cure in sight. Given this fact, surely it makes sense to focus on what can be done to make life better for sufferers like helping them to deal with the practical consequences of their condition rather than encouraging pharmaceuticals approach that don’t work. The absence of any exploration into the potential of acupuncture to provide a cure seems strange since so many people use this oriental medical system which predates western medicine by many thousands of years. Recent developments using stem cell methods ( only made possible by developments in computer technology) look to be the most promising routes to a ‘cure’.


itsmewithms
6 days ago

Totally agree. My work is in accounting systems implementations/ERPs like Oracle and SAP and we are often walking a fine line between what we know works and what we hope will work ;-> my husband was a software engineer in the implanted medical device field but the stress I thought was eating him alive and his ulcerative colitis was going nuts so I encouraged him to quit work 12 yrs ago and focus on selling our old house and building our new so that is what he has done. I, in the meantime, have had to be the one to continue working and provide money and benefits for the household.

It doesn’t seem that we can count on the MS society to embrace “explorative cures”. I think that is mainly up to us and I have found this forum and others like Seb – RRMS and his struggles to maintain his balance through yoga, experimental approaches and positive energy. He considered the High Vitamin D approach and diet changes, etc. you can learn a lot with his site
https://www.youtube.com/channel/UCJEAgWFRLfJVtfSRzjmpN0A
Dave Bexfield- tried Stem Cel and initially had good results- others have been able to maintain their improvement
http://www.activemsers.org/about/aboutdave.html
Roger Southall- great stuff and regular blog of his adventures, entertaining and informative
https://www.wholesorts.com/
Terry Wahl- promotes her Wahl Protocol diet and book primarily but has also moved from a vegan diet to her current, went through novantrone and electrical stimulation of muscles to get where she is. In her talk she primarily wants to sell her protocol but tosses a lot out there to explore
https://www.google.com/search?sxsrf=ACYBGNQJSuXuA8QJLPjOnlSQuomF7Xv-Lg%3A1570633955850&source=hp&ei=4_idXcS-Mdfi-gTJ9J7gDg&q=terry+wahl+ted+talk&oq=terry+&gs_l=psy-ab.1.0.35i39l2j0i67j0j0i67l3j0l3.1235.1938..909999…0.0..0.135.723.0j6……0….1..gws-wiz…….0i131j0i20i263.KMzXbyE18-o

These are great places to surf and get ideas as well as this forum. Keep searching and working out the best path for you- Good luck!


jamesplummer
6 days ago

Just to say the MS Society I’m referring to is based in the UK which is traditionally more conservative than the US and less prone to back new ideas. As you probably know, the NHS has the status of a religion here in the UK. Unfortunately, as we know, profit rules and ‘big phama’ trumps. Health is a business after all. They don’t want to find a cure and stop their profits ..

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