Dear Lisa1949, So sorry about the way you've been treated! Ataxia in itself is unsettling enough! I hope your future appointments are better! My best to you..., ;o)
Well HELLOOO there Beverley, thanks a BUNCH for your terrific use of words. You got me laughing my head off. Keep up this writing style and make us all happy. A boost for the serotonin in the upstairs department, that's what we all need: laughter..best medicin there is. Hugs from Holland, Elle.
I think that’s my problem, I can’t accept it. I feel so angry like my life is over… I also have 3 boys 2 of which have Autism and challenging behaviour and they can be hard work. My husband is knackered as he now has me to care for as well. I Have been off work since Friday and have spent the whole weekend in bed, in fact I’m here now. Back to work tomorrow for what? I, we have no social life, our sex life is gone, I have little or no interest in anything. I also suffer with severe depression and take loads of meds but just lately I’m starting to feel “my black dog” getting bigger. Anyway must get up and try to motivate myself. I have purchased an exercise bike with all good intentions but as yet I’ve only looked at it, I haven even sat on it yet. Take care xxx
Cicina said:
Wow, Beverly! That was a good rant. Good for you to let your frustrations out ! I do not have much to offer you for advice, but I have a bit of a theory concerning the attitude of doctors when confronted with rare diseases…
I wonder how old the research papers are that doctors base their knowledge on?
What makes me ask this question is the fact that every time someone presents themselves with a symptom, a doctor will say as you mentioned yourself, " people with ataxia do not have this, or do not have that…“
Could it be that the first patients studied did not have these particular symptoms at their stage of the disease and since doctors do not always keep up with the newest developments, they keep basing their opinions on old facts? Plus every patient, even with the same ataxia type will have different symptoms, making cases even more difficult to understand.
Add to this the facts that rare diseases being what they are called - RARE - research is very limited and very slow to progress…
Then, few doctors will admit their ignorance and it is easier to say " it is not possible” rather than " I do not know"…
Do I make any sense? Ideas are dancing through my head and it is not always easy to express them.
But I wish you the very best. The only thing I have found to help me is acceptance of my situation. I thought I would be wasting precious energy by fighting a fight I do not believe I could win in my lifetime. I prefer to live one day at a time and enjoy life while I can. I am not giving up on myself, just conserving my strength.
Take care Bev !
I am unsure whether to even attend my appt with UCLH in Novembet. I have not got over the treatment I received from one young doctor? who looked about 5 years old and wad a complete b…d! No I am not swearing. Buzzards are large birds!!!
He was so cold and matter of fact and like you said, I came out feeling WTF? I Have always been the one that had odd things health wise so I shouldn’t be surprised that I have this.
I’ve had, human foot and mouth, vitamin D deficiency which used to be called Beri Beri, I got bitten by a spider and was really ill, major complications after every surgery I have ever had, so many allergies even some you can’t be allergic to, the list is endless.
Just had the little glimmer of hope with a specialist but no. Wondering he much he earns??? Take care xxxx
coco said:
Before you said the doctor you saw, I had already guessed because I had much the same treatment.
I came out of my consultation feeling totally confused. I was given no information to take home with me. It took me six months to even look at this site but it is the best thing I ever did. We are the experts in this condition and they can learn from us.
Keep fighting … you have the right approach.
Never head of Dr Giunti and don’t wish to have any more input from them unless of course it’s treatment or a cure and that looks highly unlikely. I Came out feeling so frustrated as I’d been assured that this was the place to go and get some answers or support. I’m Just glad that my husband didn’t come with me as he’s gone from being mellow and chilled to like a dog that’s swallowed a wasps nest when it comes to doctors and so called specialists. The Only people I have had support and amazing advice from are you guys who, like all of us, live with this 24/7. Thanks to all of you. My highest regards and respect xxxx
lisa1949 said:
Dear Beverley, I can totally understand how you feel. I was seen by Dr Paola Giunti in March this year, and was admitted to UCH in Queens Square in August for multiple tests. She told me that the shakes I had was Parkinsonism caused by two of the meds I was on, and I promptly stopped them, only to suffer excrutiating tension and anxiety, I suffer from acute anxiety and have done since I was a child of 3 (family problems) that is 62 years in which I have learnt to cope. Losing that med, killed me and within 4 months I went to my GP who put me straight back on it.
Then whilst in hospital, I never saw Giunti, but was treated abominably by a young registrar who insisted I stood with my feet together, and wouldn’t listen when I said I would fall over. He then instructed me to tandem walk, again I said I would fall over. I have written to Dr Giunti and said that if on my November appointment, I have to see this registrar, I will be walking out. The upshot, they said they were investigating and would ring me. No phone call. No nothing. I am as p…d off as you are. I would rather go back under the care of My neuro consultant who has shown care and compassion. I don’t think I need the famous Dr Giunti!
Please don’t let me put you off. I think they are more for early stages and diagnosis and advice for family members and children if its genetic, but I do believe that their bedside manner could be improved. To be honest, after the first 5 minutes I’d logged off and was thinking, you earn all that money and couldn’t even be bothered to iron your bloody shirt scruffy Buzzard!!!
I Feel lucky in some respect as I have had a diagnosis and cause relatively early, some people never get one. I just worry for my kids especially my eldest son who’s just got into a good relationship and he has a 50% chance of inheriting this disease and also passing it on to another generation.
The One positive thing from going is that if there’s any developments ie treatment etc, you’re already on their books so to speak.
Keep me informed of how it goes. Take care xxx
I Think I may write a book to release my stress and frustration. I Hate being miserable but sometimes I feel selfish too and don’t even think about how my husband feels or my kids. I Hate it when someone says you’re not yourself, you used to be the life and soul of the party. Oh really??? What makes you think that then???
I’m glad I made you laugh, we all need a bit on humour now and then. Take care xxxx
Elle Strik said:
Well HELLOOO there Beverley, thanks a BUNCH for your terrific use of words. You got me laughing my head off. Keep up this writing style and make us all happy. A boost for the serotonin in the upstairs department, that’s what we all need: laughter…best medicin there is. Hugs from Holland, Elle.
When I was first diagnosed, I was like you ...... angry and in denial
The turning point came when I visited my gp for something unconnected and while I was waiting I picked up leaflet for people newly diagnosed with a long-term health condition. I enrolled for the "Expert Patient Programme" and I encourage you to do the same. I had to wait two years because I didn't want to travel too far and courses were limited in my area. It has helped me come to terms with it far better. I made new friends and still keep in touch with them and we support each other.
Family find it hard to give support because they are too involved emotionally.
Take care x
Beverley - I've come to the conclusion that doctors are idiots when it comes to ataxia. There are so many different types and causes and each one varies as to what symptoms you can have and how severe those symptoms are. I think even the "experts on ataxia" are clueless and no one has come up with a cure so the specialists and neurologists are just giving us their best guess.
I have found that no matter what type of ataxia you have and just talking to other people here, exercise and diet seem to be the best help. I was diagnosed with CSA 2 and I have mostly balance and some speech and writing/typing problems. Exercise seems to be key for me. Different ataxias diet seems to help.
You have to look at you and your situation and see what works best, The doctor's can help with certain symptoms but then I think you have to take responsibility for you and see what works. Trial and error for everyone, forget the doctors.
Dear Bev, Ataxia is a constant struggle. One of my favorite sayings is (and I say this to myself almost on a daily basis), "A woman is like a tea bag, as she never knows how strong she can be until she gets into hot water". Hugs to you..., ;o)
As always my lovely friend Rose hits the nail on the head
Just a quick one from what youve said about your symptoms. Look up Stiff Person Syndrome as many of the things you are describing fit with this. Whether you can have this with SCA 6 I dont know but i suspect that you could. The startling and stiffness is key. Check it out and see what you think.
Can talk more if this would help.
Thanks, I’ll take a look xx
coco said:
When I was first diagnosed, I was like you … angry and in denial
The turning point came when I visited my gp for something unconnected and while I was waiting I picked up leaflet for people newly diagnosed with a long-term health condition. I enrolled for the “Expert Patient Programme” and I encourage you to do the same. I had to wait two years because I didn’t want to travel too far and courses were limited in my area. It has helped me come to terms with it far better. I made new friends and still keep in touch with them and we support each other.
Family find it hard to give support because they are too involved emotionally.
Take care x
I like that xx
rose said:
Dear Bev, Ataxia is a constant struggle. One of my favorite sayings is (and I say this to myself almost on a daily basis), “A woman is like a tea bag, as she never knows how strong she can be until she gets into hot water”. Hugs to you…, ;o)
Just a quick update. Stoptober lasted about oohhh 2 hours and I am just having a rather delicate Chardonnay.
Anyway, picture the scene. Brand new, really sturdy rather sexy looking red and black leather ( wait for it ), exercise bike. I can almost hear the sighs of what, an exercise bike? Yes, an exercise bike. Up until now I have just stood, or wobbled, and looked at it admiringly. O.K maybe more like what the bloody hell were you thinking. Everyone had gone out so I seized the moment and eventually managed to get on it as the seat was too high and a bit of a struggle. Finally managed to get my feet in the little strap things, kinda like trying to thread a needle when inebriated, oh sorry, brief pause, Misty Blue just came on the radio, karaoke moment. Just give me a minute Oh honey, it’s been such a long long time blah blah ahh, anyway back in the room. So, I’m on the bike, strapped in all alone in the house feeling all pumped for my first workout on my new toy. It’s all electronically controlled digital everything, doesn’t make a coffee though.
Turns out that my 20 year old beefy rugby playing son had been on it and programmed it for a 20 minute workout, and I didn’t know that once you start pedalling, it goes for 20 minutes and you can’t stop it. Oh my holy god !!! The sweat was pouring off me, shouting help, crying etc until the 20 mins was up and it stopped. I didn’t know that if you pull the card out it stops!!! I tried to get off and was so trembly couldn’t get my feet out of the straps, oh sorry “Unchained Melody”’ and I ended up sitting on it for nearly an hour till my husband came in. There were tears and snot everywhere. He undid the straps, I slid off not very gracefully as it was too high and my legs gave way and I ended up on the floor in a heap.
Not my idea of fun. So, there it sits so if anyone feels the need it’s here in my dining room waiting to be put through its paces.
Night night everyone. No, I’m not bonkers just a little highly strung, must be my meds. Much love my fellow Ataxians. Stay safe xx
That was hilarious Bev! Not so much your experience but your recounting of it. You have a great sense of humor and this will keep you going.
Hope you are not too sore tomorrow! Thanks for sharing and making me laugh!
Take care and good night ! Bet you will sleep tight tonight!
LOL, Bev!!!! ;o)
Slept well thanks however the night before is a different story involving a dog, honey roasted peanuts and my IPad but I'm at work now so you'll have to wait till later. Its worth it though even I laughed.
Laters xx
Whahahaha..what a storyteller you are Beverley..you make us all picture the scene loud and clear. Thank you for this major serotonin boost and.. NO thank you for your GREAT offer, I got myself the same 'machine' standing right here in front of me and it could do with a little exercise itself:) Hugs from Holland, Elle.