SUCCESSES MAINTAINING MY QUALITY OF LIFE

April 9th, 2011

Maintaining my independence has become the main goal for my day to day emotional and physical well being. Here are things I use and do regularly.

1. Wearing prism glasses have eliminated the double vision I experience.
The glasses are for long distance vision and driving at night. What a difference. They look like regular glasses. What a God-send!!

2. I went both camping and rafting this year. Using two walking poles
gave me security on uneven ground and freedom to go places I might not have tried.

3. Exercise M-W-F in a one hour class using weights to maintain muscle strength, toning and balance. I strongly recommend Yoga for flexibility and balance.

4. I find using my treadmill for 20 minutes a session keeps my legs and
Brain talking to each other…which is a very good thing.

5. I take 600 mg of CoQ10 every morning (Dr. Perlman’s
Recommendation). That has definitely restored my energy level. I am
Not fighting fatigue as I used to. My speech is also clearer more of
Time. I wish I could report my balance is improved as well.

6. QUANTUM NEUROLOGY is something new I have been trying for
about six weeks. I meet with a specially trained Chiropractor in the
Bay Area. We all have 12 cranial nerves in our body. He does motor-
sensory stimulation of the cranial nerves. He is helping my brain to
create new neural pathways from my brain to my muscles. It’s about
stimulation and communication using motor testing. I am seeing big
improvements in my gait, and the stiffness in my legs. I started out
going twice a week. Now I am trying once a week, Time will tell
but I feel his treatments are holding back progression of the disease.

.

MY DAILY CHALLENGES WITH ATAXIA

April 9th, 2011

I AM GRATEFUL THAT I CAN STILL WALK, BUT HERE IS WHAT WALKING IS LIKE FOR ME:

I HAVE TO FOCUS ON EVERY STEP I TAKE. MY GAIT IS IRREGULAR.

SOMETIMES MY FEET AND LEGS MUSCLES MOVE IN DIFFERENT DIRECTIONS, AND YOU MIGHT THINK I AM DRUNK.

I LOOSE MY BALANCE WHEN I TURN AROUND. I OFTEN HIT DOOR JAMS WHEN WALKING THROUGH A DOOR.

I CAN LOOSE MY BALANCE WHEN WALKING ON GRASS, THICK CARPET OR UNEVEN SIDEWALKS.

MY BRAIN IS NO LONGER SENDING CLEAR SIGNALS TO FEET TELLING THEM WHERE THEY SHOULD GO, THEREFORE GOING UP AND DOWN STAIRS IS VERY CHALLENGING. MY TOES HIT THE STEPS GOING UP, MY HEALS HIT THE STEPS COMING DOWN. STAIR RAILS ARE A NECESSITY.

I HAVE A STIFFNESS IN MY LEGS WHEN COMING DOWN STAIRS.

AFTER SITTING IN A CHAIR FOR A WHILE MY LEGS BECOME STIFF. STANDING UP AND WALKING IS JERKY AND SLOW.

STANDING MORE THAN 15 OR 20 MINUTES CAUSES GENERAL MUSCLE FATIGUE. I NEED TO SIT DOWN.

WALKING IN DARKNESS CAUSES MY PERCEPTION OF DISTANCE TO BE AFFECTED.

MY SPEECH IS OFTEN SLURRED. IT CHANGES FROM DAY TO DAY.
OFTEN I SOUND LIKE I HAVE HAD ONE TOO MANY DRINKS. PEOPLE OFTEN ASK ME TO REPEAT MYSELF.

SWALLOWING IS SOMETIMES AFFECTED. I ALSO NEED TO ALWAYS STAY FOCUSED WHEN I AM DRINKING LIQUID.

SOME DAYS I FEEL DRAGGY AND TIRED MOST OF THE DAY.

ALL CALIFORNIA ATAXIA RESEARCH MEETING

April 9th, 2011

The 8th ACARM was held on December 12th in Sacramento from 9:30-4:00. Seven leading Researchers (all PhD’s) spoke to the audience of Ataxians and their families. Three of the speakers addressed ‘on-going’ studies at their Universities using stem cells. Much of the research is being directed toward Huntington’s Disease because funding is actively available for that research. Dr. Perlman and other researchers commented that progress with regenerative cures or delaying the progression of HD will also be a breakthrough for Ataxia as well.

Much of the funding for stem cell research in California is coming through California Institute for Regenerative Medicine. CIRM. Check out their website and all the institutions they have funded.

We heard about research being done with adult stem cells, embryonic stem cells, umbilical blood cord stem cells, mesenchymal stem cells, pluripotent stem cells.
The three speakers represented UC Davis, (Dr Jan A. Nolta), UC Berkeley,(Dr. David Schaffer)and University of CA, Irvine,(Dr.Leslie Thompson. These universities all have Stem Cell Research programs.

Dr. Jan Nolta has published over 100 manuscripts in the stem cell field and is editor of the book, Genetic Engineering of Mesenchymal Stem Cells. Dr. Nolta has more than 20 years experience with human stem cells.
Dr. David Shaffer is Co-Director of the UC Berkeley Stem Cell Center. Dr. Shaffer applies engineering principles to enhance stem cells and gene therapy approaches for regeneration.
Leslie Thompson helped identify the gene that causes Huntington’s Disease. She stated that stem cells have offered us a new way to study the disease by allowing us to examine human neurons carrying the mutation.

Leslie left our meeting to fly to Washington to meet with National Institute of Health and some Pharma Companies who would like to partner with stem cell research programs. How exciting is that!!! She has reported back that the meetings went exceptionally well. NIH and Pharma are very interested in stem cell research.

Also from UC Davis, Dr. Heike Wulff shared how her research is focused on potassium channel activators as potential therapeutics for the treatment of Ataxia and other Neurological Diseases characterized by Hyperexcitability.

The ever popular and respected, Dr. Susan Perlman gave an informative talk about Research and treatments for non-genetic Ataxia. 40% of the Ataxia population are genetic, 60% are non-genetic.

Dr. Lisa Ellerby is actively doing research at the distinguished Buck Institute for Age Research in Novato, CA. Her team is researching the mechanism of neuro-degeneration and therapeutic treatments for Huntington’s Disease and other polyglutamine expansion diseases.

Dr. Theresa Zeseiwicz, was our special out of state speaker from the University of Southern Florida. USF spearheaded the clinical trials using the FDA approved drug, Chantix. Her report was, Chantix up until now. Chantix has shown to help gait and balance in some individuals with Ataxia. It seems to be the most helpful to those who have Spinocerebellar Ataxia. Paul Konanz shared that his daughter, who has Friedreichs Ataxia, has clearer speech and better coordination when she takes Chantix. Theresa did share about negative side effects.

A big thank you to Mike Fernandez who lined up these very accomplished Researchers.
Also, thank you for Dr. Gail Kang, from UCSF, who MC’d the event. Dr. Kang will be speaking at our next Support Group meeting. She is a Neurologist and Professor at UCSF Memory and Aging Center. She trained under Dr. Perlman and has lot of interest in supporting patients with Ataxia.

Fundraising for Ataxia

February 25th, 2010

This weekend I’ll be going near Tahoe to meet many people who support Kyle Bryant in another one of his fundraiser’s. A dinner, silent auction items, and a great time with great people will be the agenda. The annual event is hosted by his uncle and aunt at their condo in Truckee, CA. Kyle and his fundraising team have had phenomenal success raising money to support research programs for Friedreich’s ataxia. In 2009 the National Ataxia Foundation co-funded with Kyle’s FARA team to award $360,000 in grant money to research. 14 applications for grants were received at NAF, and 3 were chosen to be recipients of the money. For more info about Kyle Bryant and Friedreich’s ataxia go to his website www.rideataxia.org

Exercising in class and at home

February 4th, 2010

I must say that my Yoga classes twice a week give me a great feeling of accomplishment.
I feel strong and flexible as I follow the instructor. Some of the standing positions really challenge my balance, but I love stretching myself beyond my comfort zone. I have been taking this class for 6 months. At first I couldn’t do many of the exercises or stretches for as long as she demonstrated. I stopped once for 6 weeks and found I really missed it. We do chest breathing and brain wave vibration exercises which I feel can only be good for my body. Everyone in the classes knows that I have a balance problem. I recommend Yoga in a class or at home to anyone with Ataxia.

At home, I have two exercise machines… a treadmill and an aeropilates machine. I love using them both. The treadmill I bought from a neighbor who wasn’t using it anymore. The aeropilates machine my two wonderful children bought me for a birthday present 2 years ago. I alternate days with each machine, and use the treadmill for 20 minutes at a fast walk. I never go too fast on the treadmill and always hold on to the bars. If my legs begin to feel tired I slow down the pace and keep going. The aeropilates machine I work out on for 20 to 30 minutes. I am sitting up or lying down on my back as I do a series of exercises that work on your legs, arms and core. It is easy and fun.

Yoga has taught me to work through the pain when exercising and keep going…it makes you stronger. I do fight fatigue most days and have to take rests when I am doing too much physically. I would give anything to have my old stamina back. I work hard not to give in to the fatigue, but I do have to pace myself.

Thank you for reading my blog. I am going to visit my new grandson for 5 days in Denver. I always welcome your comments, and I’ll return to the blog after I’ve had my grand baby ‘fix’. 

Wii

January 28th, 2010

Wii Sports

Tennis is a sport I played all of life. Now that my Ataxia symptoms have become more prominent, I have had to enjoy tennis on TV. However, if you want to play tennis at home, I highly recommend getting Wii Sports. Playing tennis with Wii Sports is very social and helps with stretching, eye-hand coordination, focus (using the brain) and balance.

The Wii Sports Games include skiing, bowling, golf, tennis and baseball. I like these games because you don’t need to stand on the balance board. I like playing with a family member or friend. If you are competitive, it gets your muscles and your blood flowing.
We laugh and socialize just like my more active days, which really feels good.

Holding and learning how to manipulate the controllers and the nunchuks are great for building coordination. Like anything, it takes practice to get good at it. Even if it is challenging, know you are stretching yourself to do some new. Give it a try and have fun!!

Thanks for checking out my blog. Let me know how you like it.

Wii fit and Wii Sports can be found on this website www.ataxia-awareness.com

2010 Exercise Goals

January 9th, 2010

When a new year begins I traditionally set Goals for myself for the coming year. Exercise is THE KEY THERAPY that helps me stay strong, physically and emotionally.

Because I have just come from a Northern California Ataxia Support Group meeting I am going to use some of the ideas I heard from our guest speaker, a Physical Therapist, Rosy Chow. My Exercise Goals incorporate some of Rosy’s tips with exercises I do that help me.

JOANNE’S EXERCISE GOALS FOR 2010

• Do some form of exercise for 30 minutes 5 days a week
• Do stretching exercises every day. Hold the stretch for 10 seconds. ( With Ataxia it is important to always stretch your calf/hamstrings and your hip flexors-especially if you are in a wheelchair)
• Go to Yoga class two times a week. Yoga exercises help flexibility, challenge balance and physical stability. Yoga promotes good health and positive thinking.
• Use pilates machine 3 times a week to maintain flexibility and muscle tone. My pilates instructor does 20 minutes of brain wave vibration therapy which is wonderful
• Use treadmill or walk for 30 minutes 2 times a week..good for cardiovascular exercise
• Maintain good posture (shoulders back) and deep breathing allows oxygen to flow easily to the brain
• Practice standing on one leg for 1 minute. This balance exercise is great to prevent osteoporosis. I do this while I am standing in front of the sink brushing my teeth. I hold on to the counter, but my goal is to be able to let go for 30 seconds….so I count to myself while I am brushing my teeth. Great for improving leg strength and work on better balance.

I have been a big proponent of exercise all of my life and try to focus on the things I can do, rather than the things I can’t. I always feel better after I exercise. Next time I will share with you about using the Wii Fit and something new I just got…the BOSU ball.
Stretch yourself into physical fitness. You can do it!!!

Genes and Stem Cells

January 6th, 2010

It feels good to be starting a new year and a new decade. So much is happening in the study of genes, stem cells, neurons and the brain. Neuroscientists are making new discoveries everyday. For those of us with neurodegenerative disorders this is great news. I have a special interest in following stem cell research, to see if stem cells can promote growth and healing in the brain.
I am currently reading another great book, THE GENIE IN YOUR GENES, by Dawson Church, Ph.D. This paragraph caught my attention. p.91
“Experience-dependent genes are genes that are activated by learning and novelty. This class of genes generates the protein synthesis required to instruct stem cells to differentiate in order to replace injured or damaged cells in the tissues of our muscles or organs—the foundation of growth and healing. It also stimulates stem cells into forming neurons in the brain, not just in the young, but at any age. Stimulated by novel activities and learning, these new neurons form new snaptic connections in the brain. The experiences we are having each moment are actually changing the structure of our brains. Experiences build neuronal pathways.”
This type of remarkable information indicates that there is hope for healing of cells and neurons in the brain. Stem cells can be stimulated through activities and learning new experiences.
I personally am taking “brain wave vibration therapy” in a Yoga class I take twice a week. I highly recommend this to anyone who has enough mobility to take Yoga. The brain wave vibration exercises can be done sitting in a wheel chair or sitting on a matt. Stimulating the circulation in our brains is something I am getting great results from.

Emotional Muscle and Healing Energy

December 28th, 2009

I hope everyone had a wonderful Christmas and quality time with family.
I just finished reading a book on my website entitled CELL-LEVEL HEALING The Bridge from Soul to Cell by Joyce Whiteley Hawkes, Ph.D.
I found the book very uplifting and encouraging. She makes the reader realize how our thoughts and beliefs directly affect our health and healing. “Each human being naturally possesses an astronomical amount of energy for new life and renewed health. Nerves tell the muscles to move.” In Ataxia, the nerve cell’s communication from our brain to our muscles has broken down. It is important to keep telling our brain to be resilient and renew and repair. Reach into your Soul and talk to your cells. Believe the body will respond with improved health. HAPPY NEW YEAR ! Let’s make 2010 a phenomenal year.

My Hope

November 19th, 2009

It is encouraging to see that Millions of dollars are now going to stem cell research at clinics, universities and biotech companies around the U.S. In many of the neurological degenerative disorders the researchers have already identified the genetic causes and see what happpens in the cells that contribute to Parkinson’s, MS, Ataxia, Huntington’s, and other movement disorder diseases. Armed with that knowledge, the challenge is how to reprogram the mal-functioning cells so they function as they should. The world of Stem cell research is opening up great hope of regenerating areas of the brain that are damaged from disease. It is my hope that all the researchers will unselfishly work together toward a greater common good that benefits many.