How are you surviving the heat?
 

Just wanted to check in and see how everyone is surviving the heat. I know they have been doing AC power saving in our area for the last 2 days and the house temperature is several degrees above the thermostat. I can feel the difference in my swallowing. Is anyone experience a major problem?

thanks
kathie

I just got home an am thankful for good home air conditioning. At work they had a hard time keeping up with the heat and the last 2 days I was unable to park in the shade. Yesterday I got into my car and it was 135 degrees inside, it took almost the whole 45 minute commute to cool it down. My breathing has been awful as well as chewing and swallowing.

I do have a bit of good news though, there is a parking garage at work that is always full early in the day and the underground level that is closest to my office tends to be cool even in the summer. My boss knowing what's going on with my MG has arranged for a permanent reserved parking slot in the lower level. While I have a handicapped parking placard, there are never any of the 3 slots available in the garage, they fill up early, so the only handicapped slots are out in the open with no shade at all.

Parking is terrible there and without a placard I would have a quarter mile hike in this heat.

I had no idea that heat affected MG this much until the last few weeks. The heat index in southern NH today was 104.

Joe

Joe well done to your boss. He has a heart of gold. That is rare these days.
Mike

My 'mostly ocular' symptoms were liberated by the heat. My legs are feeling it and I have a new appreciation for mobility.

I'm still grateful my symptoms are pretty mild, but this heat is not so much fun.

Hi Kathie

I have not up until now had symptoms or been on medication since January.

I have gradually gone back to my old life after approx 5 years of spreading and reaching a peak in severity.

Whilst on holiday a couple of weeks ago I decided to video myself for my own records walking up 60 steps whilst talking at the same time. I also managed a 45 minute water aerobics class in the midday sun. All was fine, until the temperatures reached into the 90´s.

Then without any warning at all, all the muscles that were previously affected became mildly myasthenic again - including the newer ones! I was surprised how after all this time they all remembered what to do! (deltoids, hands, eyes, breathing, swallowing - needing to bend chin down to get it down - things sliding down the esophagus totally uninvited or way too early - trying to get into the windpipe and as though swallowing muscles just lost their timing and completely forgot how to coordinate together)

After one week of cooling (that means temperatures in the high 50´s where I live normally) things are easing up now. I am able to open my own sodas and type freely again on a keyboard. I expect that the trouble holding the steering wheel of the car yesterday will also ease up pretty soon.

Admittedly this was mild compared to the grotesque effects heat had on me when myasthenia was at its worst a few years ago. But the heat certainly took me completely by surprise this time round.

I won´t be complaining about our climate again in a hurry.......

Stay cool :cool:


Anacrusis

(suspected MG diagnosis)

Sorry for the slight slip in remission. I guess you still need to be very conscious of the effect of temperature. But it is good to here you are still in remission. Now that you know that temperature is your biggest trigger,you can concentrate on avoiding it.

I have had a lot of shortness of breath the last several days. I have a neuro appointment on Wednesday and will bring up a thymectomy. I am afraid to try IVIG again and I understand Plasmapharesis has worse side effects.

I want remission so I will push for thymectomy. If that does not work, I think I will have to go on partial disability.

Your remission gives me hope
thanks
kathie

Hi Kathie,

Thanks so much for your note.

I can´t say I´m in remission of something that is only a suspected diagnosis given by an MG neurologist/researcher.
But I do know what it is to have those exact same fluctuating and debilitating myasthenic symptoms - day in day out and asking myself:

• Is it going to be like this for the rest of my life?

• Will I ever be able to plan anything again?

• Will my day always feel like it´s over by 9 a.m.?

• Will I ever know exactly how much an activity is going to cost me after the fact?

• Will I lose my job?

• Will my son feel like I didn´t love him in childhood?

• Will I ever be able to get even the smallest glimpse of the life I used to have back again?

And yes, I can at least with 100% certainty say that there is hope for people suffering from long term progressive myasthenia that may or may not necessarily be Myasthenia Gravis! In a fluctuating disease like MG the clues given during remission I would think are just as important as those given during flare ups in a disease where 30% are supposed to go into remission. I wish more people who have gone into remission would come by here, out of duty and gratefulness, and post from time to time to give a more balanced picture of the outcome of this disease, and very importantly, like you say, to give hope.

Oddly enough for me, during a time with no detectable symptoms, stress was not able to trigger any myasthenic weakness at all - but heat has done so in such an extreme way - pretty much back to some of the same spots as it left off - except with one increased increment in severity regarding the bulbar issues. I guess it was nice to have hand weakness resolve in 2 weeks instead of 2 years, which is what it took the first time round. As of today, it is just the deltoids that are left to resolve. Always those deltoids! – the first of my muscles ever to be affected with myasthenic weakness all those years ago.


I also do wonder if the heat trigger fluctuates for some people ie. one year heat is a great trigger, but the next it is not. Or is temperature generally a stable trigger….


OK. So I really do hope you will get your thyectomy followed by a wonderful remission. Be careful with those symptoms you are having and I wish you all the best of luck tomorrow and will check in sometime soon to see if you have posted your progress information in another thread.

All my best.


Anacrusis

Anacrusis - duty and lack of gratefulness have not kept me from letting others know that there are some of us who are in "remission". Two reasons for me - 1. There are some others on other MG support group sites that don't hide their feelings towards those that are not as sick as they are. and 2. I am not comfortable telling others about how lucky and blessed and I am for fear of upsetting them.

I am a 52 year old female, 1 and a half years post trans-sternal thymectomy. I have been symptom and drug free since 3 weeks after my surgery. (I was only on mestinon) I only had ptosis but my thymus was enlarged (and ended up way bigger than the CT scan showed)
I'm extremely glad I had the surgery, wish I knew why it worked for me, and hope the remission lasts forever, but am now a bit more educated about the disease to know otherwise.

Cait24 - I can't tell you you should get a thymectomy since the success varies too much in some people's opinions, but I would find out if there are any proven definite medical reasons why you should not have the surgery. Good luck at your appointment!

Thank you,

I am extremely grateful for you sharing your opinion & info.
Wishing you continued remission for as long as is possible....

Anacrusis

I've lived in Flordia for 6+ years. It took a year or two to get used to it. In the past I was able to play beach volleyball all day and go to the beach. This year, since the spring, I can't do it. I can't tolerate the heat. Going in the backyard with the heat beaming down on me kicks my butt.

wbdolphin, thanks so much for your insight. I am in a similar situation as you were. I am a 53 year old female who has had moderate MG symptoms for 3 years after abdominal surgery.

I have done a lot of online research on thymectomy. Several reputable medical sites quote a 30% chance of remission lasting 5 years, 85% improvement in symptoms and virtually no one gets worse. There is short term exaccerbation of breathing issues. I did find one medical site that said there was a 1% mortality rate.

Statistics say 80% of MGer have abnormal thymus. I have read so many personal stories like your own where the thymus scan seems OK, but they find after surgery that the thymus was much larger than they thought or showed hyperplasia, some even had tumors that were malignant. I am surprised that thymectomy is not used more.

I just figure it is my best chance.
thanks
kathie

Hello :) and good luck with your myasthenic journey, strizzlow.

In the beginning before knowing anything about the effects of heat on neuromuscular transmission I was trying to do a warm water stretching class in a pool with a ramp with ladies 40 years my senior, and the heat from that pool seemed to fill my muscles with concrete as did the warmth of my normal morning shower. One of the older ladies in the class asked why I so young joined this class, why it didn´t help, and why I never seemed to manage to keep up with them. Well a few years before that I was river rafting the Grand Canyon (and playing volleyball down there after tying the boats up :)) and driving through the Death Valley desert in a car without the air conditioning on - without any trouble whatsoever, and now suddenly a couple of degrees fluctuation could create such a difference.

Tomorrow I am going on a short sail trip in a small yacht. I am pretty worried about the sudden abnormal heatwave we are having and also having to help with the ropes - but I have taken good precautions and planned very differently this time round and everyone going on the trip is on full alert.
In my situation I am just incredibly grateful that this year I can even sit upright in a boat and actually grasp a rope at all if I have to :)


Anacrusis

I am a newly diagnosed 57 yr old female also living in Florida. When the temperature gets above 90 I have a lot more weakness. The overcast, rainy weather this month has been a godsend to me. The heat makes all the muscles in my face feel like they have weights hooked to them pulling down. My legs get really heavy and I drag my feet when walking. But my biggest problem has always been diplopia and ptosis. I can feel my eyeballs jerk around off and on all day.

My thymus scan was normal but I would gladly have it out to have a chance to go back to a normal life. I don't think my doctor thinks it is an option for me. I guess my my symptoms are considered mild at this time but, my life has really gotten so much smaller. It is depressing to think this is how it is now and it will likely get worse. I am still hoping for remission. Good luck to Cait, hope you get your thymectomy!
Sandy:circlelove:

Good Luck and have fun!! :hug:

Have a wonderful time! Bring extra ice packs. People says those cooling towels/bandanas from Lowes work really well.
thanks
kathie

Thanks very much :)

Now that I have been, I can see exactly why an overnight sailing trip to a warm Island may not necessarily be the most perfect of getaways for any type of myasthenic!

My best.....


Anacrusis

One Moment At A Time
 

1) Stay in air conditioned home or buildings as much as possible.

2) Try to go outside (to do errands, etc). in the early morning before the heat gets really bad.

3) When I MUST get out in the heat, I dress very lightly and often wear a cooling neck wrap (AMAZON is my best friend), and carry a spare wrap in a lightweight cooler in my car so I can change it out.

4) Speaking of cooler, when I must venture into the heat - even short trips, I bring a little cooler, with the spare cooling neck wrap (in a plastic baggie) and a couple of bottles of COLD (sometimes previously frozen) water.

5) I often carry a little paper fan with me - which I use if I am in a situation (like a recent wedding) where there are a lot of people, the temps are warm and there is very little air movement. I also have a small battery operated fan, but that can be cumbersome to handle.

6) I avoid DIRECT sunlight, wear sun glasses ALL of the time, and a visor or floppy hat.

7) AS SOON as I start feeling "unwell and weak" and "overheated" from the effects of heat, I try to get OUT of the heat ASAP, TELL someone if I am really feeling poorly that I AM feeling poorly, sit down, cool myself down, and relax.

LOL - Can you tell I have had a bad experience in the heat???

8) Float and/or submerge in a friend's or neighbor's pool whenever the opportunity arises.

As We All Know (or may unfortunately might find out - the hard way), HEAT is bad for myasthenics. (Or, for many or most of us). :cool:

Staying Cool, Calm and Collected is my favorite way to spend a summer day!:winky:

That is SUCH a great answer, SoftTalker!

For next year´s summer vacation I am checking in to this place for a few weeks: :)

http://www.icehotel.com/uk/Online-bo...nline-booking/

LOL

That place looks pretty cool - that is for sure. ;)

I bought 3 of those cooling neck wraps - 1 to use and 2 to keep in the cooler to rotate. Don't forget to put the ice coffee and dark chocolate in the cooler for emergencies too!

kathie

I bought a cooling collar and I love it. My neuro actually sells them in her office. I also have a cooling vest but I don't like it. Too bulky. The collar is perfect and inexpensive.

Not Very Well Lately
 

I posted earlier about the tactics I use to survive in the heat.

Unfortunately, recently, the weather here in California has been unusually hot AND humid. Our summer started out unusually mild......:confused:

Hot = I have been able to deal with (mostly). (See previous post).

Hot AND Humid = has been sinking me and my MG.......

This atypical weather for Southern California (near the beach) finally has me believing that this "Global Change" is real, folks!! (Whoops, sorry, I guess this statement is for another forum). :cool:

Back to the topic:
Surviving by staying inside in air conditioning and hydrating (drinking fluids) often.

And by "doin' nuttin' honey..........":hug:

I too feel the effects more when it is hot. Sometimes it will make the symptoms worse. Then it will take several hours up too a day too get back to where I was before. I thought it was just me being from up North but living in MS. :)