Medical Studies

Pharmaceutical companies go through extensive testing of a medication before the FDA will approve it and many of those tests involve human subjects - count me as one of them.

I dislike shots (I say “dislike” because hate is such a strong [yet accurate] word) and unfortunately, MS medication involves needles and you have a choice: (a) once a day; (b) three times a week; or (c) once a week (but this needle goes much deeper into your body - ouch). I was on option “b” until a month a month IV was introduced - that was two hours of my day (not to mention travel time). It should be noted that none of the current medications cured MS; they only delay its progression.

Now I have no health insurance, so I am not able to get my meds and if I do, they are in excess of $1,000+ for a one-month supply - not feasible. So what does a person do? Enter in the medical study or clinical trials.

I was accepted into a two-year double blind study (which means only the pharmaceutical company knows what I am getting) for an oral medication. There are good points and bad points to a study such as this.

The good: (a) free medication; (b) doctor appointments to make sure nothing is seriously wrong; and (c) no health insurance needed.

The bad: (a) the medication because one cannot be sure of what they are getting; (b) traveling to North County for a doctor’s appointment as they can take a large chunk out of the day and become extremely fatigue inducing; (c) not feeling as though anything is happening and only becoming aware of anything if it should be something major.

There are risks (as with all medication) and they are fully explained before you start as well as a ton of paperwork to fill out at almost every visit. Even some of the other location I go to (such as my MRI) email me a questionnaire after the visit.

The point to this rambling is that if you do not have health insurance, it might be a good option to look into a medical study to help you with some of your medical needs. You can google “medical studies” and find the one that fits you. They have studies for every major health issue.

The medication that I am taking, I have no idea if I have the real deal or not. However, I look at it this way - even if I do not have the real deal, at least I am helping those down the line.

Heat and MS

Ah, summer – bbqs, sun and lemonade (or a cold beer) with friends and family. Sounds so Norman Rockwell – a picture perfect day with no worries. But, having MS can askew your view of things. The heat (from personal experience) can throw a large monkey wrench into things. You might thing that the wrench cannot be removed, but with a little planning, one can enjoy summer to a certain degree.

I could put in big bold letters – keep cool – but that is a natural given (not for just people with MS but for anyone). How does one keep cool? Fans and air conditioning while indoors. You can also make a cooling unit with only three things: 1) a fan; 2) 5lbs. of ice; and 3) a tub to hold the ice. To start up your system: a) make sure it will be in a location that will not be damaged by condensation and put your tub (you can place the tub on towels to help); b) place the fan behind the tub; c) open the ice bag and pour into tub; and d) turn on the fan to keep cool. The fan blows the cool air your way to help cool you down.

Even if you are out and about, you can still keep cool: 1) try to accomplish your errands in the early morning before the heat sets in or after sunset; 2) Drink cool water and keep hydrated; 3) Shade – find some. Even with a slight breeze it can help; and 4) purchase cooling packs. The Multiple Sclerosis Foundation (http://www.msfocus.org/) offers a chance one a year to get a free pack – either a) a vest with blue ice inserts or 2) hat, scarf and wrist bands. The hat and scarf are soaked in cool water until the water beads are swelled. As the moisture evaporates, it helps keep you cool. The wrist bands hold blue ice packs over your main vein on wrist – blood is cooled and sent back into your system.

I am sure there are other ways to cool down such as a cool bath or shower, even lounging in a pool (though you have to be careful of sunburn) can also help.

For me – I have three fans and an air conditioner at home and accomplish most, if not all, of my errands in cool morning hours before fatigue sets in (I can last for a maximum of two hours [and it is not just because of the heat, I had other problems with my MS]). If I am out, I find shade and hope for a breeze. I also have a cooling set (hat, scarf and wrist bands), but only use them on extremely hot/bad days. (Important note – do not freeze as they will get a slimy coat and no longer work as well, but keeping in the refrigerator is fine [makes is a lot colder]. If I get too bad, I will lay down in a dark room with fans and take a quick nap. (Naps are another topic completely)

No matter how you keep cool, a person who has MS can enjoy summer while waiting for cooler weather to come back.