My first post

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Comment by wobbles 49 minutes agoDelete Comment

Hi everyone

I was diagnosed 12 months ago by a top neurologist at St Vincients Private. He looked at the MRI and announced that I had Cerebellar Ataxia and to walk in uneven sand !! Needless to say i was shocked. 2013 was a terrible year for me and all my family. Depression set in and i spent most of my time on the lounge or in bed. Unable to get my head around the fact that life as i knew it was over. I spent all of last August in a rehab hospital to come off Xanax. Which my GP thought could be causing the slurred speech and unsteady walking. I was prescribed Xanax for anxiety and realised how addictive it was. You have to take more and more to get the same relief. One month later I was off the drug but my ataxia was getting worse. I was and still am having trouble holding the brush to dry my hair, having trouble using a knife and fork, muscle and joint pain was unbearable and i was biting the inside of my cheeks when talking. I was angry that i was surrounded by alcoholics and drug addicts who chose that path, they could stop drinking and get better but i didn't cause my ataxia and it would continue to get worse. I found a new neurologist who is great and admits he is only human and says I know more about ataxia than him. He exhausted every avenue hoping he had missed something and sent me for a PET scan ( one good thing is I can say I don't have cancer !!) MRI of brain and spine, endless blood tests, nerve conduction tests, also to a leading Australian professor who unfortunately diagnosed Autosomal recessive Spino cerebellar ataxia. So I had come full circle. Slowly the old me began to shine through and now I am stronger mentally. I am not going to let this stinking thing win !!!!!

I have cried too many tears and screamed in frustration. Had numerous falls. Why me ? is the question no one can answer. So with the help of my physio ( i see her about twice a week) a speech therapist, a pshyciatrist, a rehab Dr, my amazing GP and all my wonderful family and friends who have never given up I am moving forward. I am making my life simpler and smarter by:-

Placing suction grab rails in shower and toilet

Buying a rotating drying brush for my hair

Using a backpack instead of a hand bag (i need both hands to hang on)

Buying an extra large mug and only half filling it so i don't spill it when walking to the sofa

buying an old fashioned purse with no zip

buying clothes that have no buttons. Pull up shorts and jeans

Shoes with Velcro or elastic not buckles

Invalid sticker for parking (i am no longer driving due to involuntary muscle spasms)

Doing heaps of walking in pool and deep water running with a flotation belt.

Using a tens machine for muscle pain.

Epsom salt baths are amazing for an aching body !! you need two cups per bath so i bought 25kgs online for $40

and finally asking for help !! I have found that people love to help and feel useful .

This is my first post and I know it is long but hopefully helpful. Like Umigal i check my emails everyday for the latest post. Wednesdays post on exercise inspired me to contact my old gym (pre ataxia) and i am proud to say i had my first session yesterday which i really enjoyed and i am pleased to say my muscles are a bit sore !!

I have booked Thailand with my family in April and a European river cruise in June. My Mum turns 90 in August and our son gets married in October!! So i have a lot to look forward too and getting fit and strong is a must.

cheers for now xx

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Keep going wobbles, that's all you can do. I have dark days thinking about my daughter and son, but pick myself up and make sue my daughter fights this all the way

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HI WOBBLES

IM JaN A ND YOUYR STORY SOUNDS AALOT LIKE MINE.ATFIRST I WAS SAD AND RECLLUSEDBUT LATTER I GOT MARRID AND DID ALOT OF TRAVEL0ING WITHU MY HUBBY ANND RAIISED MY SOCIAL LIFE. IT REALLY HHELPS YO MENTALLY. I AM NOW 62 AND M ORE sEATTLED. GOOD LIUCK AND GOOD FOR YOU

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Well done for all that you’ve achieved Wobbles, and very best wishes for all your plans this year! xB

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Good for you, Wobbles, glad you are fighting it. My daughter says the only thing that really helps her, other than good food, organic, no junk or soda, is exercise. She used to have so many cramps, even in her stomach, and they went away with exercise.

Have a much better 2014!

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Well done wobbles.. you have certainly sorted your life out .. I am 72 and still walking with two sticks.

I agree about epsom salts although they are very heavy to move around!

I had my car converted to hand controls so still driving. My husband drives mostly but it is nice to have the option.

xx

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Thank you for your encouragement. My 12-year old daughter has similar symptoms with the docs yet to find a diagnosis, after 11 years of testing. At her age, with her desire for independence, it becomes more frustrating for her, because ,her parents, are always in her "space" but have found that an in-home care helps to divert my daughter's focus.

Have you found any eating utensils that make eating easier?

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It is great to hear how you are adjusting things to make life simpler. I am glad you are moving on with things. I woke up this morning and decided to change some things around here to make things easier for me instead of just talking or thinking about it. I have a rollater and don't know how I would function without it. I have a plastic bottle which opens up to refill which I use for drinks--it's easier to carry around with the screw on lid, and I crocheted a special case that fits on the rollator for it out of "plarn"--cut up plastic shopping bags. You can get a thermos bottle of the same sort at www.flylady.net. I plan on getting one before summer. Also carry a bag on the handle bars of rollator with billfold, keys, and other essentials or carry such as that in bag under seat of rollator. I like your suggestions for clothes and shoes--I intended to keep some of those in mind as I replace things. Thanks for posting. Keep exercising and enjoy your family!

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Welcome to you and your first posting, Wobbles! I was diagnosed with my ataxia eleven years ago, and admire the way you've handled yours, with the help of your family and the professionals! Kudos to you! Ataxia is frustrating and challenging! I believe the key is to never give up or give in to it! It's our new "normal". I've learned so much from the people on this site, your list is helpful to me, so thank you! Also, good for you, Granny h, the things you've done to make your life easier are very innovative! ;o)

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Depressed? I'm not depressed. If I was depressed, where was the “black cloud”, the pain, the inability to get out of bed that I had heard about? Degrees of depression never occurred to me. Life just seemed like a lot of work, visions of swimming through gelatin, my worldview was kind of flat. Surely I could mind–over–matter that.

For a time after my diagnosis, I tried every non-pharmacological treatment for depression I could think of. It didn’t help. I had resisted resorting to prescribed antidepressants because I thought my depression was specifically due to the onset of my Spinocerebellar Ataxia and recent retirement, and consequently, not responsive to pharmacologic treatment. I still slept well (neither too much or too little), hadn't gained or lost weight, maintained a healthy appetite and didn't feel like biting anyone's head off–too often. But, focusing on people who were worse off and how fortunate I was not to be: in pain, terminal, single, financially strapped, friendless, childless, etc....didn't seem to matter.

I also had a bias against antidepressants. I believe they are overused in this culture on people who aren't happy 24-7, rather than being reserved for people experiencing a genuine depression. I think I also had a fear of dependency and that was part of my aversion too. "Oh for Gawd sake," a friend chided, "it's not as if you're on heroin!"

I had breakfast with another friend who was prescribed antidepressants after her heart attack and it helped get her life back in balance (not my kind of balance). She thought I was showing signs of depression and should consider treatment. I had been thinking about it for awhile and her input was another outside perspective. In retrospect, combining antidepressants with counseling might have been more efficient, but my "can do" attitude, usually an asset, became a (uh) handicap. Maybe just one regimen would help me snap out of it. So I told Earl (who had been waiting to hear it from me) that I thought I needed some kind of intervention, thanked my friends, and called my neurologist.

Usually responsive, I didn't hear back from her. Did I really email her or just think I did? I spend so much time in my head, that's a common occurrence. Just as I was about to call, in came her email response. My correspondence had been sent to her spam folder. As she said, "The very last thing I wanted to tell you was that you were being dumped into my junk mail–that seemed like just too apt a metaphor for life for someone struggling with depression.....but I know that your sense of humor remains intact, even if it has been strained lately." So, I looked around for my missing sense of humor, started a course of a selective serotonin re-uptake inhibitor (SSRI) antidepressants and waited.

“Outing” my depression and treatment plan rather than to deny it to family and friends helped. Even though they may have wanted to, no one said, "Well, duh!" Just as situational depression can be subtle and the onset gradual, so is the treatment effect. I had been warned that response can take time and that an SSRI isn’t an amphetamine. But, I wanted to be better instantly and eagerly watched for any sign of improvement. I was like a pot of water on the stove. Jeez, I wasn’t used to being emotional and it was so ...depressing! Before the Ataxia, I didn't like being "handled". Now, people thought I was fragile and treated me accordingly. I probably was, but that really pissed me off.

So, am I better after a treatment course of SSRIs? After a while, life seemed less like work, more like a manageable effort. I aimed for a balance of my Pollyanna and Wicked Witch sides. I didn't have visions of swimming in gelatin anymore. Skeeter helped me enlarge a world that was progressively getting smaller. Those were my major benchmarks, so I began the tapering process off antidepressants rather than just abruptly stopping treatment. But, my Ataxia will always be evident and progressive, so it's not likely that I will ever need to plan a celebration party. The occasional private "Pity Party" is more likely (previous post). My good days are more frequent than my bad days. Yeah, I'd say better–not great, but better.

The lesson: Even situational depression is not a "snap out of it" thing.

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I was so excited to see people had replied to my post !!. I am about to research eating utensils so I will let you know Rogo.

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Hi Wobbles,

Sorry to hear of all your problems. There is a special blood test you can take it will pin point all the nutrients you are deficient in. I had severe stiff back with Pain I started taking calcium 1000mg magnesium 500 mg 1/2 morning and night

and my stiffness and pain went away so I know it was a deficiency problem Here is a article on Spectracell Laboratories they found my problem. http://www.apassionforhealthyliving.com/spectracell-micronutrient-test/

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Thanks Steve I will email my Gp. As I live in Sydney, Australia Can the test be done here ?

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Wobbles,

If you call this number 1-800-■■■■■■■■ client services they can advise you where to go for this test. They are located in Houstin Texas they mainly service in the USA. In the time being try 1000 mg calcium 500 mg magnesium 1/2 dosage morning and night along with vitamin B1 derivative form of Benfotiamine 200 mg vitamin B5 200 mg this should help your muscles and pain also this should help your speech problem. Along with the nutrients eat a one banana a day. Your nerves use sodium potassium calcium to transmit electrical impulses to your vocal cords I also take 5000 iu vitamin D3. All these nutrients helps me with my ataxia and slurring. Please show your doctor the article above on Spectracell Laboratories.

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Wobbles,

I forgot to mention I also take 5000 iu vitamin D3.

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Wobbles,

I feel sulbutiamine a derivative of B1 would be better than Benfotiamine that I suggested above. I would like for you do some research on Sulbutiamine. If you need a source let me know.

wobbles said:

Thanks Steve I will email my Gp. As I live in Sydney, Australia Can the test be done here ?

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hi wobbles, I am a mum who has a son with ataxia, you are the first person I have come across who lives in australia, my son attends St Vincents hospital from time to time and see a wonderful doctor call daveneza (spelling could be wrong) he has given up , the frustration and anger he shows from time to time is heart breaking His walking swallowing talking is progressively getting worse, he is 38yrs old he was diagnosed when he was 25yrs old, he is now reluctantly walking with a stick, my heart breaks for him, socially he plays golf with mates, he says that he just sits and listens as most pple dont have the patience to listen to what he has to say, as he has alot of trouble speaking. He is angry that he will never have children as he wouldnt want his children to be in the risk factor, he is ignored by woman, and looked at as if he is mentally challenged.We talk alot, but I can only try to understand the full impact, he has a beautiful heart, and kind , he wishes he could have a girlfriend, but has given up on that also, pple tend to stand clear of him when he is in a group setting, or if he speaks to a woman she cant wait to get away from him, I have witnessed many incidents that have been very hurtful. I will have to try to encourage him to get back on this site, and send you a message, being here in australia will be a surprise to him, he tried to start up a group for pple with ataxia, but there doesnt seem to be anyone at Terrigal or Gosford on the Central Coast who have this condition, anyway in saying this I want to say how postive you are now, and the courage to over come your struggle mentally with this condition all the best to you kathleen

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Dear Wobbles, Sounds like you're doing everything you can to help yourself! Kudos to you!!! Ataxia is extremely frustrating and challenging (I was diagnosed ellen years ago), but we must be proactive and keep a positive attitude, even though it'd difficult at times. Your list of making life simpler and smarter is brilliant...,thank you! My best to you.... ;o)

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Hi Kathleen,

I am so excited to hear from you. I fully understand what your son is going through and its not easy. You are also the only people I have come in contact with in Australia. I would love to stay in touch and possibly visit you one day. Its too hard over the phone due to our speech!! I Have been to the gym six times already since my last post and it does wonders for my confidence. I would love to talk to you so if you want my phone number please just ask I will give it a go !! Stay strong you sound like an amazing mum

Cheers Sally (from Cronulla)