Sunday, July 4, 2010

Wheelchair Woes and Perspective, Eating Healthy,

 YES YOU'VE COME TO THE RIGHT PLACE! Same blog with a new design.  I thought we needed a change.  Feedback welcome of course.  What do you think?  I thought this would be easier on the eyes, but I am not quite used to it yet myself.  Believe it or not, change is not easy for me. 

I am shocked at the time lapse between my last update and now.  It is mostly because of wheelchair problems.  In mid-June, my wheelchair died.  It just stopped driving.  So for a few days, my aide put it in "push" [or "manual"]  mode and pushed a 386-pound wheelchair with me in it [extra weight of my body undisclosed here] around the apartment until she threw out her shoulder.  Then the ALSA loan closet dropped off the best thing they had available -- a wheelchair tailor-made for a 300-pound,  6-foot-tall quarterback, with the seat controls [tilt, recline, and footrest elevation] ON THE BACK OF THE CHAIR.  This meant that, all the 30 or so times a day I needed to recline to relieve my aching back, I had to ask my aide to do it.

Well, the wheelchair company picked up my wheelchair for repair and the loan closet received a loaner returned to the loan closet with all the controls on the arm, but with a footrest that didn't work so well, and fanned out at the sides, making it a major obstacle to move around in certain parts of the apartment.  And the worst part -- it had no headrest. So if I fell off to sleep, my head would flop off to one side, and I would wake up sore from my neck through to my shoulders.

Finally, after about two weeks [which is actually very fast for a wheelchair repair], I got my own wheelchair back, and I can once again sit at my computer straight and type with both hands.  You see, wheelchairs aren't just chairs on wheels.  The wheelchair is where a PWD spends all waking hours.  They are custom-made for the patients measurements and abilities.  Some have controls on the back, if the patient cannot use his hands, and must be operated by an attendant.  Some even have controls operated by the patient's head.  The seating is also custom-fitted.  So a loaner is never quite right, although the lady who runs the loan closet at ALSA does her best to match up the loaner and the patient [she was on vacation when my wheelchair died, by the way]
So the only analogy I can give to someone who isn't familiar with wheelchairs is this: what if you had to send your body to be fixed and, in the meantime, you had to borrow another body until yours came back.  The loaner body would be as close as possible to your own, but it wouldn't be quite right and wouldn't work the way your body works.  

I have a friend I recently reconnected with, and I am very sad for what has happened to her since we last met.  She lost her job and never managed to find another decent job again.  It's so hard out there in this economy.  But I wonder if she is just refusing to do certain things, or if she is so mired in depression that she is "stuck".  Either way, I understand, but I can't help thinking what my mom always drummed into me -- "if you have your health, you can always do something to make money".  However,  I think she was talking about physical health; loss of mental health is just as debilitating.  I listen to this friend and I refrain from preaching,  or even giving advice.  I empathize.  What I can't wrap my head around is mature adults saying they are having "the worst day of my life".  When I hear why, I say to myself "that should only be the worst day of MY life."  It's all in perspective, and I keep thinking how amazing it is that I have coped with some of the things that have happened.  And, yet, I have so much to feel lucky about.  There is always someone much worse off than I am.

The only defense I have right now with a disease that has no cure and no really effective treatment to stop progression -- is a strong immune system.  Recent studies have shown that patients who retain their weight have a longer survival.  Well, I have retained my weight, and added some.  I am totally disgusted with the way I look.  I am the heaviest I have ever been, and heavier than I thought I would ever be in my wildest dreams.  If anyone had told me before ALS that one day I would reach this weight, my reaction would have been "shoot me now and get it over with"  I was an avid exerciser and walked the city many miles during weekends and vacations.  If I had let myself go, and needed to drop 10-20 pounds, I would put my mind to it, and be successful. Anyway, exercise and burning calories is next to impossible with ALS, so I have committed myself to healthy eating.  I decided that I was putting a lot of empty calories in my body, and would replace those with healthy calories.  I have given up eating red meat and poultry, so I am almost a vegetarian.  I snack on healthy nuts like almonds, cashews, and walnuts, reasonable amounts of fruits, and yogurt [preferable plain with fresh fruit].  For meals, I eat a lot of salad and vegetables, quinoa [a whole grain with a lot of protein], a banana every day, a half-can of coconut milk [lots of nutrients and anti-viral and pro-biotic properties], yogurt [probiotic] and anti-oxidant-rich fruits like pomegranate, blueberries, and purple grapes, whole grains, fish [calcium, fish oil, and protein], green tea, and cruciferous vegetables [anti-cancer],  and occasionally dark chocolate and red wine.  I have cut down on sugar, refused sugary desserts except on my birthday, use agave nectar as a sweetener in my tea, and also cut down on salt and carbonated beverages.

Most of all -- the hardest --I try to stay out of stressful situations. This has meant forgiving people who have made empty promises that they never intended to fulfill, and the people in my life I assumed would be there for me because either 1) I have been there for them in the past 2) they are old friends or related to me.  Forgiveness is for my benefit, and not for their benefit.  I also avoid contact with people who aggravate me, abase me, or will never accept the way I am.  I blog and twitter to raise awareness, but I'm done with trying to change certain peoples' minds.  I am there to listen and share in joys and tragedies, but if the connection gets too aggravating or frustrating [and especially if it gets abusive or disrespectful toward me], I walk away faster than I would have in the past. I have to, for my own preservation. 


Anonymous said...

I can soul identify on many levels with your writing. Thank you for sharing. The pain of loss reminded me of this quote that gives me such comfort.
HeartGlow Intuitive Parenting: Be thankful for the poor relationships that are exiting your life, they make room for those who are meant to move forward with you. Stay in Love! ♥

And this one, "Tears are a river that take you somewhere." Dr. Estes

Dr. Estes wrote me a personal email and comforted me with the death of my baby Grandson last month. One of the things that she said to me was that I should row my boat on that river of tears. I am rowing!

With love from the Prairie,
Kay Marie

Andrea Bryant said...

Fern...you hit all the nails on all the heads as always...."Forgiveness is for my benefit, not their benefit...." brilliant. there is so much negativity that we can't control...and what you have done is...not put a ridiculously positive "Pollyanna" spin on things...but a REALISTIC one - makes you realize how often people go one of the other two stupid ways.... you get it right...carry on, fab lady...

Joe Wions said...


Thank you for so eloquently addressing the importance of the right fit of a wheelchair to a PWD. I am sure most people don't get the almost symbiotic relationship between a wheelchair and the body of the person who uses it.

I also appreciated your comments about putting problems in perspective. While I try to never judge the weight of another person's woes, I find that when people like you and me share about the challenges in our lives with ALS, it often helps others to put their problems in perspective. That is one of the reasons why I blog, and I suspect it is the same for you.

I applaud your efforts with diet. This is one of the hardest things for most people to do, and yet, one of the most physically and emotionally rewarding ways a person can take care of him/herself. I have been eating primarily raw vegan diet for 3 years now. It has improved my energy level to an extraordinary degree, and to a greater extent than anything else I have tried. It has also made it much easier to manage my weight. Two good resources, if you would like to explore, are: The Vegetarian Guide to Diet and Salad, by Dr. Norman Walker, and The 80/10/10 Diet by Dr. Douglas Graham.

One thing I know from reading your blog is that you are a very strong and determined woman. I am sure you will be successful with your weight gaols, and look forward to hearing about your results. Best of luck!

Joe Wions

Paula Anderson said...

Fern ~
My brother died last month of ALS three 1/2 years after his diagnosis. He and I wrote a book together to give hope and encouragement ~ and empathy ~ to those on this journey.

I'm happy to pass the book on if anyone would like it: aapma46@bresnan.net

(A Lifesaver's Story ~ by a Person With ALS ~ John S. Massa