Jun 262004

There was a recent post on Usenet ASMS about how she could best help her friend with MS. There were a lot of suggestions of which most of them I highly agreed with. Mostly I was impressed that this person took the time to ask the question on how to help/be a good friend since this was the first exacerbation in their friendship. I know it can be awkward dealing with people with a chronic illness so here are some of my thoughts:

  • Ask them how they’re feeling. Don’t make it the whole purpose of the conversation or the only conversation item but it certainly shows you care. Definitely don’t ignore the disease it only makes them feel like a leper. Unclean! 😉 Probably best to be specific – ask me how I’m doing and most likely I’ll just respond with an OK. This is probably because I view that as more of a polite hello type of question similar to “what’s been going on” to which I am likely to respond with “same old stuff” rather than a question inquiring about specifics. For example if you know I’m in an exacerbation ask about the symptoms, etc. Other things: maybe how the injections are going, is the heat bothering you, etc. etc.

  • Check on the whole family. In my opinion it is much harder to be a care giver because they do all the work and a lot of worrying (probably even more.) Often times they get neglected as the attention all goes to the MS’er but they definitely need support and encouragement too in helping with a very frustrating disease.

  • Even if an MS’er isn’t in an active exacerbation doesn’t mean they don’t need assistance. This especially applies to the care giver as they have to take on more responsibilities that the MS’er either can’t do, shouldn’t do, or just doesn’t have the energy to do anymore. Pay attention and see how you can help – offers are good but sometimes just going and taking care of a need is better.

  • An excellent suggestion on ASMS was to ask if they are worried about the future – I’d go a step further and to make sure to ask the care giver that question too. Life can be very uncertain with MS and uncertainty brews worry. I certainly was very worried immediately after my diagnosis but I don’t think anyone asked about that – OK because unless you were very specific (see above) I may not have really answered with anything other than I’m fine. I still get worried on occasion. I worry if what I am feeling is another exacerbation coming on (and as of late it probably is). I also worry, when in an exacerbation, if this is going to go away (or when), will I fully recover, and will this be the beginning of secondary-progressive for me.

  • You need to give MS’ers more attention. This is a hard disease and you need to be around/talk to support them and their families. If you just give them the same amount of attention/encouragement (unless it was really above and beyond) as before the diagnosis that is unacceptable. There are periods of darkness in the disease, even at best it isn’t as bright as it used to be, so make sure you give the extra attention so you don’t get marked (or be) a sunshine only friend. I’d like to say that I don’t keep track but I know (and remember – as hard as that is to believe based on how my memory has gotten) how those around me acted/helped/encouraged (especially at the time of diagnosis) and it wasn’t always good – the same goes for when I’m in an exacerbation. I’m sorry MS’ers are more high maintenance but I guess that is life – give them the same amount of attention or less attention and they’re going to feel like lepers.

  • Have a basic understanding of the disease and some of the symptoms. It isn’t hard to go to the National MS Site and get an overview of the disease, symptoms, and treatment options. I take it personally if you do not have a basic understanding of the disease after there has been ample time (usually I give people a couple of months) to do some reading about it or asking questions. I view it as not caring because this disease has both altered our lives, stands to potentially significantly alter the future (with disability, etc.), and is a lot of what is going on day to day. Certainly a day has yet to go by that I do not think of the MS and I don’t think that will ever happen but definitely not in the short term.

  • Most importantly, but tied to the others, pray for us and our families. I am not holding out for a cure but I do hope for one. Please lift us up to Christ for strength, hope, health, perseverance, and anything else you find appropriate. Certainly the Lord has been exceptionally good (I don’t complain about my MS in part because it pales in comparison to all of our blessings – and of those blessings my wife is the biggest by far!!! – and also because it has yielded good) to my family but we still need your prayers – especially on the hard days/times.

Extra gold stars and thanks go to my mom and my sister who have gone above and beyond without being told! They have definitely done a fantastic job with my wife (my care giver) which means a ton to me!!! This has certainly been an adventure so far for all of us – thank you both for your support!!!

 Posted by at 10:53 pm

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