[Douglas M Clough]

I went to our eat valley support group from May 2014 until COVID 19. I only missed if I was on vacation or doing something else with the chapter or national. It almost didn’t happen because if my fear it was going to be a bunch of people crying.

My wife and I drive to the group location and I left 3 times before actually going in. There were pregnant 8 or 9 other pALS and a couple of cALS there as well. And it wasn’t a bunch of crying people. It was encouraging and there was laughter.

Everyone in that group have died except me. That had been a recurring theme, by thru the group I have met some of the nicest, funniest, strongest and most committed people I’ve ever known. I bought the van from the first person who died from ALS that I knew. Frosty. I still have his van. I wanted to keep it in our support group family.

There was a good while where we had the same pALS for well over 2 years, at heart most. I have one friend who died within 6 months. But we had a ton of fun for those months! I may have forgotten names but I remember so the faces.

I used to meet many of them for coffee or lunch. Most of us talked via text often we looked forward to the next group activity and most of us participated. We have an incredible team at our chapter back then. But once COVID hit, things changed. Or chapter still supported us but couldn’t put together group activities.

Once things started to return to done sense of normalcy,, the staff had changed as did the support group structure. I understand that it started off centralized for a while, but it hasn’t returned to local communities in the rest and West sides of the Valley. There is more staff and they are doing more important things than meeting us in monthly, smaller, and more intimate groups.

I wish we were meeting is local groups. I can’t drive downtown for the I’m person group and I have a Bible study when they have the virtual group. I’ve gone from attending almost all of the group meeting to only attending a handful of group meeting, virtually when it was a part of the in person group.

I know that our ALS office separated from national asking with many other “chapters”. We have had fundraisers that raised record amounts of dough. That will help ALS Arizona grow and hopefully get super groups where the patients are instead of having the patients travel long distances.

We had the best people in our group. Macy if the survivors and I have remained in contact.

I would suggest going to a group to try it a few times. I was scared to go at first, but it completely changed my studies about my journey with ALS and it changed baby others.

Doug

[Douglas M Clough]

I lean hard on my faith.

Remember, I am not the only one in this family hurting because of ALS.

Other people in this family have lives they need to live away from me and away from ALS.

Get some daylight every day, and meet with a friend if possible.

I try to live my motto, Love Life and Live Life, as best I can.

[Douglas M Clough]

I go to Barrow and have never experienced that level of clinic. We have clinics at Mayo, the VA and 2 other hospitals and none do them like that. That would be more exhausting than it is now. I was in a clinical trial and expanded access for 5 years.

Clinic visits are to evaluate progression and aid the patient and family in ways that can help them live with a better quality off life. . It also can help lengthen life expectancy by getting equipment ordered before it’s needed. That may stop falls or help get nutrition into a patient or hello them sleep better.

It also helps the family and friends. I want my family to know that I’m taking the best care I can to be able to enjoy THEIR lives while I can.

 

I would hate to be resigned to my fate without enjoying whatever I can, each and every day. That would be a hard life to live.

[Douglas M Clough]

I hate the saliva issue. I take atropine by itself now because the hyoscyamine affects the whole body. I have a neurogenic bladder and using hyo created a constant urge feeling.

I graduated to the big bottles of atropine. I get dry mouth all the time and it tastes like desert after sleeping with the bipap. The only place I get Botox is in my bladder.

I am on a trial drug that failed phase 3. Only 40ish of us tolerated the max dose. It helped me and I’m the only one still taking it. That’s going to stop July 31 since they didn’t make more.

The will beat cure. When, who knows. Not during my lifetime. I just passed my 8th year. There is so much out there and people are looking everywhere for a cure. Please be careful with some of the roadside cures. They may make one ineligible for a clinical trial that may help.

The has been a lot of growth and a lot of disappointment. Dinner things may just need a tweak whereas others need to be flushed.

I wish you well. I’m sorry you have the issues you are having with doctors in your area.