[Susan Gray]

Kathy,

I am still driving after being diagnosed in November 2019.  Luckily my left foot is the one that’s affected with drop foot, so I still feel confident.  However, like Dagmar, when my husband drives, I am not hesitant to help him out!  😉

Susan

[Susan Gray]

I live in central NC which is not considered a hot spot but the virus infections continue to slowly increase.  My clinic visit was last week, and I too was anxious about it.  It all turned out fine as everyone was required to wear a mask while in the clinic.  I observed services being constantly wiped down.  All in all it felt very safe.  I much prefer in-person visits than TeleHealth.

[Susan Gray]

Hi Dagmar,

I too thought this guidebook was phenomenal!  How appropriate that these Original Strength  exercises/movements are suggested to people who are recovering from COVID.  No one in our immediate or extended family has contracted the virus, and I’m very thankful. I must admit, however, I’m getting tired of dealing with COVID on top of ALS.  I need some friend hugs and sister visits.  😉

 

[Susan Gray]

My ALS clinic visit was supposed to have been on March 31 with the team as well as my neurologist.  Since being diagnosed in November I’ve only seen the team one time and was disappointed to not be able to see the therapists.  I was to begin participating in a respiratory study with my SLP and that has been put on hold for the time being.  I hope I continue to be a good candidate for the study, since it will now be a few months before we start on that.

I had a phone visit with my neurologist who asked me the questions from the ALS Functional Rating Scale and we talked about supplements.  The phone visit was OK, but being still early in my diagnosis I really want my therapists to see me.  Every now and again I feel like I’m in a canoe without a paddle in the middle of the lake.  At the end of the visit my neurologist announced that I would be seeing Dr. Bedlack next time because she was moving.  So now I’ll be starting with someone new yet again.

Thanks for listening.  I do think remote visits can be a good thing when all the kinks are worked out, but I’m not sure phone calls are the answer.

[Susan Gray]

Hi Amanda,

It was my first virtual happy hour, and it was fun but a little strange.  I’ve had some online visits since then, so I’m beginning to get used to it.  We did actually meet with a small group of friends on a friend’s concrete parking pad.  There were 7 of us and we stayed at least 6 feet apart, and brought our own chairs, drinks, snacks etc. It was also a little strange because we hadn’t seen these friends in a long time and normally we would greet one another with a hug.

Have fun at your virtual lunch.  My son has done that with friends while hanging out in their individual kitchens and cooking dinner.  😉

Susan

[Susan Gray]

I also use meditation, specifically the “Calm” app. I will investigate Mindfulness Meditation and also the Hallow app that John recommended. Thanks so much for these recommendations!

[Susan Gray]

Dagmar,
Today my husband and I went to a friend’s house and met up with some Pickleball friends that we have missed seeing in person. Janis has a huge parking pad outside her garage. We all brought out own chairs, wine, snacks etc. and sat dispersed at least 6 feet apart. It was so good to visit and see our friends in person. We plan to do it again regularly. It was wonderful!

[Susan Gray]

Diana,

I have this wonderful image of you in high gear and racing back up the driveway! Did you hair blow in the wind??!! I don’t have a “driving machine” yet, but now I can definitely see an advantage. So far, our parks, walking paths, etc. are still open but everyone has to honor the 6′ rule. We actually live on 18 acres so we have our own park more or less.

Stay safe during this time of uncertainty.

[Susan Gray]

I’ll let you know how it goes. I don’t know that it’s a good substitute for in-person visits but during this time of COVID-19 it may be the better option, at least for the time being. Personally, I’m doing OK health-wise right now, so I feel OK about doing a tele-visit.

[Susan Gray]

Update on the Duke ALS Clinic. My scheduled appointment for March 31 has been cancelled as the clinic is not open. I will have a Telemed call on that day with my neurologist. I am comfortable with that as I was feeling apprehensive about going in. Luckily I live nearby and don’t have to worry with long travel times to get there.

[Susan Gray]

I have received reminders for my clinic appointment on the 31st so it appears that a my clinic is open.

[Susan Gray]

We are planning to participate in a virtual Happy Hour today with friends that we normally see every Tuesday evening.  Our friend will be connecting with 3 of us using Messenger on Facebook.  We haven’t done this before so I’ll let you know how it goes.

I have a friend who drives to our house and we visit with her in the driveway and me on the front porch.  At least we get to see each other in person.  It’s difficult because we just returned from wintering in Florida and we can’t see/hug our friends.  But we’re figuring out other ways to connect.

[Susan Gray]

I have my next appointment on March 31 at Duke.  I haven’t heard anything to the contrary yet.  I check their website regularly.  I have only received general alerts from Duke Health Care………..

[Susan Gray]

I am so happy that this forum is available to us.  You and Dagmar do an excellent job as moderators asking pertinent and thought-provoking questions.  We all gain from what you and Dagmar offer as well as from each other with our own questions and responses.  Yes, Happy Anniversary to our forum indeed!

[Susan Gray]

Thanks for sharing, Dagmar.  That’s great advice.  I have also found combining gratitudes with deep breathing is a wonderful way to fall asleep.

[Susan Gray]

I was having major trouble sleeping while awaiting the diagnosis which was most likely due to anxiety and not knowing.  My PCP prescribed Ativan to take before bed to help with anxiety and insomnia.  I could go to sleep fine but would wake up and not be able to go back to sleep.  The Ativan helped initially, but I soon realized I didn’t want to take it any more.  Thankfully, for now, I’m not having trouble sleeping.  I listen to soothing music when I go to bed and am able to go back to sleep if I wake in the night.

[Susan Gray]

I have had the first dose of the shingles vaccine and was planning on getting the second dose soon (my two month wait is over).  But I recently got the tetanus vaccine (it was overdue) and was told by my PCP I should wait 30 days before going ahead with the shingles due to both vaccines being very strong.  She wanted to give my body time to assimilate  the tetanus vaccine.  So now I’m waiting till the end of December.

[Susan Gray]

I get a flu shot every year and have done so this year as well.  I started getting the flu vaccine when I worked in the school system.  I usually get it at the pharmacy, but got it done this year during my yearly physical.