Thursday, February 01, 2007


Because the tenants were not supportive, and the permit process felt arduous, by the time I had a workable team of a good architect, a good contractor, an empty apartment and possible funding, I was at a tipping point. I had had the building for over 12 years. I was ready to finally make the dream of wheelchair accessible housing in a beautiful building come true when I got a hostile letter signed by ALL the tenants accusing me of neglecting the building! This was evidently done on the advice of an attorney who must have been an amateur to allow the language they used - or maybe they didn't show the lawyer the draft they sent me.

One of the tenants later asked if his friends could move into the empty unit. "Why, if you think I don't take care of it?" I asked. "Because," he said, "It's the best building in Berkeley." Both he and his roommate had signed the letter of complaint; they stated 2 problems: a rusty battery in the smoke alarm (which is the tenant's responsibility anyway) and a loose hinge on a kitchen cabinet. We kept the available unit vacant until the sale of the building.

I also learned that the manager (whom I had been subsidizing since illness prevented her from working as she had before) had contributed to cheating me out of $17,000. This was such a betrayal I had no further interest in working with her. So when a fireman told me "You need to chill out" after I reported candles burning after a tenant had left the building, that was the final straw. I quit. A fire department that doesn't back me up with a safety issue, the hate mail from the tenants, the missing thousands of dollars and the protracted wait for the permit, fugetaboutit.

The permit board called the architect after I'd moved the project to another city. The permit board told him, "Ok! She's got the permit for the wheelchair ramp!" He answered, "She sold that building six months ago." The person from the city said, "Oh, no! She was the only one voluntarily doing this!"

Hopefully I'm still doing it. But not in Berkeley. Let's hope someone who can tolerate what they have to go through to create wheelchair accessible housing gets it done.

I have not given up entirely however; I continue working with the architect and a consulting architect on a building in a different city. Because we've been at it for over a year and it's not yet complete, I'll postpone further information at this time.

It still seems like a good idea: creating wheelchair accessible housing. I've used up my savings and retirement accounts and we're not yet finished. I told my friend Andree I was ready to give up. From her wheelchair, she said "Don't."

If I ever do give up, I hope someone else decides to create accessible housing so that our friends in wheelchairs have options other than facilities and hospitals. If you care about this situation, keep it alive.

Tuesday, January 30, 2007

Here is a list of things I have done to FIGHT MS!

The basic 4: Nutrition: For the spine or the brain to repair themselves, they need the proper nutrients.
Movement: There is such a thing as "non-use injury." Muscles can atrophy; circulation becomes impaired. If you are unable to move yourself, a physical therapist can move your body for you.
Stress Management: My exacerbations occurred during stressful times in life: final exams at the university, later during divorce, and again after major surgery. Stress is inescapable, but there are actions we can take to alleviate damage to our bodies. Massage and/or physical therapy: this helps with muscle aches, pain, and mobility. It also relieves touch deprivation.

I will go into detail on these at the end of this list, but I'm sure that all of you have already pondered the above and may have your own systems in place to FIGHT MS!

In addition to the above, I have done the following:

1. Reduce exposure to toxins. Mercury is serious stuff; it may be a factor in the increase of autism in children. The symptoms of mercury poisoning are similar to those of multiple sclerosis.
I chose to have old mercury filling removed and crowns put on my teeth. It was expensive, so we did not do them all at once. My dear dentist allowed me to pay on time. After I paid for one tooth, the dentist would then do another. It took nearly five years, but the old fillings have been removed. He did not think it was necessary, but I'm the one with m.s., and I'm willing to do whatever I can to become as healthy as I can.
To reduce exposure to electro-magnetic fields (a possible suspect in cancer in children), I got rid of the electric blanket and moved electrical appliances 3 feet away from my bed. I also limit time on the computer and watching television.
I drink bottled water and use a filter for the tap. Even clean city water has chlorine, and in Berkeley it also has fluoride, which I may be allergic to.
I live near a bus stop and there's a lot of dust and diesel fumes in the air. I try to go to a park or the ocean at least once a week and take deep breaths to fill my lungs up with clean air. That's part of my stress reduction program, as well.
One of my friends, an old friend, has a habit that disturbs me; she recites all the disasters of the recent days. I have asked her repeatedly not to, reminding her that I am fairly aware of current events. Her attitude of dread can be contagious. The last time I saw her she insisted on reciting the death count in the war to a recently widowed woman who was in my car. When I shouted, "Stop it! We are trying to have a nice evening!" She then insulted me, and sulked for the rest of the evening. This may not count as toxic conversation, but since I always feel upset by our visits, I've pulled back from the friendship.

2. Brain exercise. Using both hands together can retrain damaged neurons. One study shows that it may even create new ones! I resumed piano playing; knitting would probably also be beneficial.
Just listening to music can help us heal. Studies show that plants grow better when exposed to certain classical music - particularly Mozart. One woman recovered from cancer (she had been told she had 6 months to live) by going to every jazz piano concert by her favorite musician. After a year, she was still alive, so she went to the doctor to see what the deal was. Her cancer was in remission. She had done nothing else because the doctors had considered her case hopeless.
Many people have taken up crossword puzzles and/or sudoku, the logic puzzle with numbers. Before I go to bed, I have a cup of mint tea and a piece of chocolate, and I do about 20 minutes of sudoku. It clears my mind of worries and helps me rest.
Learning any new skill or a new language also keeps our minds active.

3. Prayer Groups. Many places of worship have meetings, and/or invite requests for prayer. You do not have to belong to a church to request this service. Some Episcopal churches also have services with anointing with oil and/or a laying on of hands. Studies have shown that people who are being prayed for often heal faster, even if they aren't aware that anyone is praying for them. If you have no spiritual practice, find a believer and request prayer. It's free, and there are no harmful side effects.

4. Support Groups. These have been well documented; people with cancer live up to 3 years longer if they are in support groups. The M.S. Society can refer you to one in your area, or if none is nearby, there may be chat rooms on the internet now. In the group I attended years ago, every meeting was centered on a specific method of healing. People without M.S. started asking if they could come! After 2 years, the meeting had quadrupled in size.
As well as discussing healing options, we could talk about the pain, the embarrassments, the isolation and the occasional victories. No one understands your struggle better than someone facing the same illness. Don't go through this alone.

5. Laughter. Bless his heart, Richard Pryor was able to make jokes even about his M.S. He told a reporter, "God forbid you should ever get this shit - it'll piss you off!" He also thought about not making a will, saying, "I want a buncha motherf------ fighting over my stuff!"
In China, one of the treatments for heart patients is to watch old Marx Brothers movies! I've read about groups where people just get together & laugh. Hey, if it works, it works.

6. Sunshine. Vitamin D, which is produced by our bodies when we have adequate exposure to sunlight, helps the body absorb all nutrients. A recent study shows that most people with M.S. were born in the spring, when the pregnant mothers had little access to sunlight. This may also be a partial explanation of why so few cases are found in India. So sit outside. Take off your shirt. Stick your head out the window.

7. Adequate rest. Good luck. I tend to wake up every 2-3 hours, and sometimes cannot get back to sleep before sunrise. I solve this problem by not making appointments before 11:00 A.M. just in case it's one of those nights. During the exacerbation after the divorce, I would collapse in mid-afternoon. Just fall asleep. I had to program a nap into my day for about a year and a half, because it would happen no matter what else was on the schedule. I tell people I'm on Spanish time & now it's my siesta.

8. Chill Out. Heat sends our systems into overdrive. Before I knew this, on a trip to Hawaii, I was sitting in the hot tub & enjoying the sun. After 3 days, I thought I was dying. I made a bargain with God. Now I avoid hot tubs and if I travel to a warm place I sit in the lobby by the air conditioner, I keep a little spray bottle to spritz myself with cool water, I wear only cotton clothes and layer my shirts so I can take the outer ones off. I keep an ice pack in the freezer and have a fan. My favorite shoes are flip flops.

9. Exercise. Move whatever you can whenever you can. There have been times where going more than a few feet was difficult for me. After years of walking to my local cafe every morning, 1 & 1/2 blocks away, I have been able to walk for up to 15 minutes. I even take little "bench hikes" with my dear one in the lovely local parks. We walk until we come to a bench. I rest, & then we walk to the next bench. I also do pilates in bed before I get up: I flex my feet alternately, and do leg lifts. Since learning that one simple pilates move, I am able to walk longer with less pain.
Swimming is the exercise of choice for most people with m.s. because it is non-weight bearing, and even if part of your body craps out, the other parts can propel you in the water. One time neither my legs nor my arms were co-operating. I nearly despaired until I realized, "Wait a minute. Fish don't have arms or legs!" And I made it across the pool just wiggling.
Yoga has helped many people with severe disabilities or illness. Some yoga can be done if you're bedridden. The Bay Area M.S. Society now has yoga classes.

10. Pain Management. I do take aspirin from time to time. I stopped taking ibuprofin after noticing vision flashes. The best pain management tool I have found is Feldenkrais. It's a series of movements, or massage by a practitioner, that teaches us to use our muscles with minimal strain. One evening when I was in terrible abdominal pain, I learned to lie on my back, bend one leg, and let it fall over the straight leg. After doing that 2 times with each leg, the pain began to ease. If & when it ever comes back, rather than going to the hospital, as I did in the past, I lie down & do that one move. Voila! the pain diminishes.

11. Physical comfort. Don't be any more miserable than you have to be. At home I have a rocking chair in nearly every room. If I need to sit down, there it is. And the rocking motion helps propel me back up when I'm able to stand again.
I use a cane. That was a hard one. It was not until a friend told me to buy a wooden one and he would carve it to make it pretty that I could face this. But they work. And they help. And I still get dates.
Wheelchairs are not the draggy old things of 50 years ago. My friend Pete has a wonderful scooter chair, and another friend has a very stylish slim wheelchair with electrical controls. The local bus and subway can accommodate her so she still goes to the symphony whenever she likes.
I got a plastic shower bench so I can sit to bathe without sitting low in the tub.
I have comfortable shoes (not cheap!) and orthotic supports.

12. Sex. Don't be careless, don't be desperate. Use safe sex. Use condoms. Insist that your partner get tested and look at the printed results! One young woman I know got exposed to aids. She said she had asked the guy if he'd been tested & he said yes. Well, he had, but she did not ask to see the results. He tested positive but did not tell her. Look at the printed results. Unless you want two deadly diseases, be careful.

13. Skip # 13. We have enough trouble.

14. Learn to use a computer. New worlds open up, and you can stay in touch with people even if neither of you can physically visit the other.
Access to information can help lift our spirits, and some suggestions really work.

15. Clothing: I use all cotton - it breathes and prevents overheating, and it's washable so when I spill stuff (oh, man, I just spilled my soup 10 minutes ago all over my nice skirt & now I have to shower again), hey, it goes in the wash.
Zippers and I hate each other. I use pull on pants, and leave the top buttons of shirts undone so I can pull the blouses on without fiddling with buttons. (I didn't tell my family I had m.s. until I was no longer able to do buttons. Hard to get dressed? Time to tell folks.)
I drink cranberry juice every day so I don't have to rush to the bathroom constantly, and have noticed less "leakage" if the toilet is too far away to get to in time. I sometimes also wear Depends adult diapers for car trips or long evenings where I might be in a chair in an auditorium, for instance. How do I tell my date I'm wearing Depends? I don't. If we decide to get naked later, I take them off in the bathroom and stick it in a plastic bag. Nobody else needs to know. (Unless he's kinky, but I avoid those types.)

16. Safety. I moved downstairs although I love the view from upstairs to minimize falls. My house has an alarm and a hidden camera. I have a cell phone. I've taken classes in karate and tai chi. At the bank, I go inside to use the ATM machine.
I drive carefully and refuse to get in cars if the driver has been drinking. Seat belts were invented because they save lives; use your seat belt.

17. Emotional Support. Therapy has saved many people from despair; I'm one of them. Good therapists are a gift from God.
I choose friends who don't freak out when I spill red wine on their new tablecloth or when I stumble or break out into tears for no apparent reason. Recently I decided to call every friend and tell them I love them. I also did that with family members who are still speaking to me. I try to talk to a loved one every day, even if only on the telephone.
12 step programs are a great help for anyone with an addiction or anyone involved with an addict. There are also programs for trauma and torture survivors.
I meet weekly with a retired professor who has polio. Our problems are similar; the solutions are interesting and helpful, and we talk about science, politics, music, art, & stuff. It gives me something to look forward to as does -
Weekly dinner with friends. We meet in a tolerant, decent restaurant and just show up if we feel like it. The smallest group was one (I was alone on Hallowe'en), and the largest has been 15. We don't make reservations because we aren't sure who will show up. My ex-husband and I started this in 1978. My friends & I are still at it.

18. Give a rat's ass about something besides yourself. People with pets live longer. People with plants live longer. Old women who watch soap operas live longer! Many housebound people appreciate a simple phone call to say "hi". If you have a special talent, don't waste it. Andree volunteers at the m.s. society, Liz was a peer counselor, Joyce calls people to remind us of the m.s. support group meetings. Everyone who is not in a coma can do something.

19. Meditation. There are now studies that show the brain changes during meditation; it can lower blood pressure and help people through stressful times. I do a very simple one - 10 breaths. I do it in the morning, and before I go to bed. It takes about 2 minutes and it works.
Once a week I go to a park and turn off the cell phone and just listen to birds.

20. Fasting. I don't recommend this, but I do it myself. I no longer go over 24 hours since I learned that the brain chemistry can change after one day without food. I do try to fast once a month or so for over 12 hours. I used to just have water; now I often have juice & when I'm tired of these, I might have a cappucino fast. (I know, I know, it's cheating.)

21. Anger Management. I stomped my phone to death recently and slammed my computer when it froze. I don't recommend getting mad at your essential stuff, but think about it - how could we not get mad?
People recommend counting to 10. Hey, by that time, there's a hole in the wall. I have no solutions to this one, but I do intend to try an anger management class at some point. People with brain damage often have trigger tempers. I'm one of those people.

22. Medication. I take one prescription medication - I've been on it for 45 years. I also take SAM-e - an over the counter supplement that helps rebuild cartilage. It also seems to help my mood (except when I'm throwing telephones across the room).

23. Cranberry Juice. To combat bladder infections I drink it before I go to bed. I often have it at restaurants instead of wine. I had to give up black tea for awhile (although it's my favorite drink) because it irritates my bladder.

24. Consecrate the suffering. When it's really too hard to bear I ask God to consecrate my suffering. I imagine someone who's having a rough time and pray for them as well as for myself. Just don't let this suffering be pointless.
When I feel joyful I also ask that God share that joy - put it out into the earthly atmosphere. And when I feel well, I ask that the healing I have been blessed with be shared with someone struggling with an isolating illness.

BACK TO THE BASIC FOUR: Nutrition, Movement, Stress Management & Massage.
Do them all. Do them as best you can as often as you can. If you don't, how can you get well?

Nutrition: Adele Davis says that autopsies show that people with M.S. are low in magnesium. Magnesium must be taken with calcium to be effective.
A researcher at UC Berkeley, Marian Diamond, discovered that the brain, like the body, can heal itself. To do so, it needs all the "B" vitamins.
M.S. is nearly unheard of in India. Maybe it's the sunshine, maybe it's the tumeric - a spice used in curry which is known to be an anti-inflammatory.
The Swank Diet (information on this is available through the M.S. Society) has helped one of our neighbors. Studies show that people following it can live up to three decades past diagnosis.
My diet is: cappucino, croissant and orange juice for breakfast; Indian or Mexican food (usually) for lunch, and the basic food groups for dinner: fish or poultry or meat, veges (I prefer salad), potatoes or a grain (pasta, rice) and either wine or cranberry juice. I eat lots of bread whenever I feel like it. I also have elevenses and tea time nearly every day. (Elevenses is morning tea with a cracker or some such.)

Movement: Keep moving. Move everything you can as often as you can. The following have helped people with M.S.
Tai Chi
Pilates I do one exercise before I get out of bed in the morning; I point my toes alternately while raising one leg at a time. I've been walking better ever since an instructor taught me this simple (but difficult for people with M.S.) move.

Stress Management: You're alive? You've got stress. Meditation helps, exercise helps, music helps relieve it. The best advice I got was to "Take half an hour a day to do something you love to do." I decided to lie down & listen to Glenn Gould play Bach. As we now know, that was a brilliant move! Or, in this case, non-move.

Massage: Keeps circulation healthy, prevents touch deprivation, helps mood. Kaiser Hospital has found that people who have regular massage treatments need less medication. Every time I get an extra paycheck, I go to the spa in Calistoga and have a professional massage. But any friend willing to rub your back can be a treat. Even giving yourself a foot rub if you can will help the circulation and mood.

That's it, folks. That's my list. Take what you like & leave the rest. Do what works for you. Who cares if it sounds random or looks silly or if your doctor or dentist says "Don't bother." Health practitioners only know what they are taught. We can be their teachers as we cope and live full & happy lives.

Best wishes & God bless.