I have recently been diagnosed with Spinocerebellar ataxia after a 15 year struggle for an accurate diagnosis. How do I tell my friends and family without looking like "Poor Pitiful Pearl". I don't have much information on the progression of the disease and wonder if anyone can offer some information. I am using a walker, I have a wheelchair in the house for later and the doctors at UAB said I would end up in a power chair. There is so much to try to deal with at one time. They also said I should move since I live on a river, seven miles down a dirt road and at least 45 minutes to a Doctor or hospital. I am struggling with this and need any help and advice that anyone can offer.
The fact that you use a walker, combined with the deterioration of your walking (I assume it is since you use a walker) doesn't and shouldn't make you a "poor pitiful pearl". If by chance telling your family and friends the issues, makes them believe that, then something is wrong. Their uneducated or unfamiliar. My family try to be supportive, but really aren't. They assume I can do a lot of what I use to and that was giving me the "poor pitiful pearl" feeling also. It got to the point that I had my doctor talk with them and explain. Bottom line is, they have to know your using a walker for something, perhaps if you don't talk with them about it, they may think your a "poor pitiful pearl".
I hope I helped some, good luck
Gianluca
Move! you cannot afford to become isolated
Regards
Barney
Hi Doodle Bug - I’ve received the sympathy face before - more times than I’d prefer; and although sympathy is much nicer than harshness, sympathy (vs. empathy) pretty much blows.
I keep those looks or reactions in perspective by remembering that those responses have nothing to do with me and everything to do with the other person.
Progression is generally not possible to assess - everyone is different - if you are older or over weight then obviously things will be more challenging.
The only postive thing to be done is to live healthy lifestyle with appropriate diet and exercise.. plus of course doing everything you can to keep cheerful.
Isolation is not good but.. if it would upset you to move, then you can use internet to socialize.
Keep sharing on here and let us know how you are getting on.
Patsy x
Hello Doodle Bug, Yes you should move closer to town.
I was told I would be in a wheel chair by the time I was 30. I am now 65.I go down the street on a mobility scooter and I have been using a walker for the last year or so around the house..After having a couple of bad falls it is safer for me to use a walker.I was told a cpl of years ago that I also have C.I.D.P.
Don,t worry about what to tell your family and friends. Just tell them the truth. I think you will find that they will be very supportive once they know what the matter is.They most likely have been waiting for you to tell them what is wrong with you.They must know that there is something not right. The walker? Things will get harder to do,opening jars,writting,but try to think positive and tell your self that this disease is not going to get the better of you.Believe me it will help.Good luck for the future and stay safe.
Yes I do. I have taken sleeping pills just so I try to sleep through them. Sometimes they get so bad not even the pills work.I get up and walk around with the walker, go back to bed only to get up again and again.Sometimes it gets so bad that I'm crying and asking God to please stop this. After awhile the pills kick in and put me to sleep. Has your Neuro put you on any meds?
I have too take vitamin D and calcium for cramps. When I don't take it I have cramps. When I do NO cramps.
Hi Lori, my Neuro hasn't put me on any Meds but I will start taking Vit D and Calcium. I hope it works for me. My local Dr has me on Oxycotin but that is not really helping much.Stay safe.
I have too take vitamin D and calcium for cramps. When I don't take it I have cramps. When I do NO cramps.
I'm am not on ANY med's. But I do have to take my Calcium! Oxycotin is a very good pain pill. I like them lol. But I know. Most cramps are due from lack of Calcium. Milk is not enough. You can take a lot. 3 tablets. But only 500 to 600 milligrams at a time. Not because you will get sick. Because only that will digest at a time. And do not feel like a "Poor pitiful pearl" Your not! We are very strong people. We have to be to get threw each and everyday.
Be careful with Calcium supplements. Too much can cause kidney stones…ask your doctor or pharmacist what a safe dose is for you.
Also, your doctor can check your vitamin D levels and see if you are low on it.
Hyland leg cramp pills pm cured me of the leg cramps. I used the pills for several months and now no more cramps. My neurolgist told me about them. They r the bomb! Organic to.
I was told by my doctors. Milk can cause kidney stones. Thats why I was told to take 1,800 milligrams of calcium pills. I weigh 89 pounds. But yes you need to find out from your doctor. But a person should have 1.500 milligrams daily. A women anyways.
Although I don't have Spinocerebellar Ataxia (I have Sporadic Cerebellar Ataxia-unknown cause), many of the typical ataxia symptoms are the same. Don't let what the doctors tell you become a self-full-filling prophecy! As Patsy said, everyone is different as far a progression is concerned. Try to do whatever you can do, exercise-wise, as safely as possible! You can exercise your muscles even while sitting! Anything you can do movement-wise is helpful for ataxia! Stretching each day helps me with cramps. You can stretch leg and arm muscles while lying in bed, if need be. Having ataxia does not define you! Be honest with your family and friends. Tell them what you know about your ataxia and limitations (look up your ataxia on the net, as there are many reputable sites that will help you understand, as knowledge is power!). Hopefully, they will understand and be supportive because they love and want the best for you! Keep in-touch on this site, as we're all here for you in your journey! ;o)
Oxycontin is the time-release form of oxycodone, usually prescribed for chronic and severe pain. Because it contains a larger amount of oxycodone, it has become one of the most abused prescription drugs in the United States.
Lori said:
I'm am not on ANY med's. But I do have to take my Calcium! Oxycotin is a very good pain pill. I like them lol. But I know. Most cramps are due from lack of Calcium. Milk is not enough. You can take a lot. 3 tablets. But only 500 to 600 milligrams at a time. Not because you will get sick. Because only that will digest at a time. And do not feel like a "Poor pitiful pearl" Your not! We are very strong people. We have to be to get threw each and everyday.
Sorry, I never addressed your moving. My advice is to do whatever YOU feel comfortable doing! As I don't know your family/friend support system, you may have your situation covered. Remember, stress can cause ataxia to be worse (at least it does for me), so do whatever you feel is best for you. You may get some solid advice from family/friends that may help you decide what road you should take. Good luck... ;o)
I would have to agree that moving seems like a good idea. Having said that, I have no idea how your condition may develop.
I found a lot of really interesting and useful information (including this site) here:
http://myweb.tiscali.co.uk/ataxia.pages/index.htm I hope it helps.
Sorry, but Have no idea on how to tell people. If they are aware of you having a condition (which I am sure they must be), I would just tell them when they ask, rather than an announcement. My wife has this and has known for 12 years (we thought it was MS for 10 years before that). Still almost nobody has a clue what I am talking about when I mention the condition.
That is what I really meant. It is a good for pain pill. Like my son smashed his face in. So they gave him Oxycontin. I only gave it to him when the pain was really bad. I was afraid of addiction. Because everyone does. I would not use it for leg cramps.
Eric said:
Oxycontin is the time-release form of oxycodone, usually prescribed for chronic and severe pain. Because it contains a larger amount of oxycodone, it has become one of the most abused prescription drugs in the United States.
Lori said:I'm am not on ANY med's. But I do have to take my Calcium! Oxycotin is a very good pain pill. I like them lol. But I know. Most cramps are due from lack of Calcium. Milk is not enough. You can take a lot. 3 tablets. But only 500 to 600 milligrams at a time. Not because you will get sick. Because only that will digest at a time. And do not feel like a "Poor pitiful pearl" Your not! We are very strong people. We have to be to get threw each and everyday.
I agree with what everyone said. The answers already lie within you. We can only validate your truth. This is tough for all of us for it means change. And change is hard for some.
We will support whatever you do but the logical choice is to move to a more accessible spot.
See ya down the river :)
Michael
HI Doodle. I have had cerebella ataxia for a year. I have had a test but they havent given me a diagnosis of which one I have got. When I got a suggestion of what I had I joined the ataxia uk and a local group. Being a member of a group you can gleam a lot of ideas to cope with your condition and also I have been to see my doctor to get me refered to a gym on prescription and it does have a lasting effect. From Metal Mickey