Down day

[Jacqui-A]

Hi all, I am having a really bad down day today. It all started when I was in the town and I couldn't walk properly. Very tearful hope it passes. I feel I'm very much on my own, nobody really understands. They see you get out the car and reach for the walking stick but they don't understand the emotional impact it has. Maridale

[HarryB Administrator]

HI Maridale

I am sorry today is not a good day for you. It WILL pass. I fell in town on the pavement a wee while ago. That was bad enough, but then I went into a shop shortly after and fell again, nearly pulling half the display down with me. I felt very embarrassed and absolutely terrible. The rest of the day wasn't great but I made sure when I was home I did things that made me smile-listen to my favourite songs and singing at the top of my voice, eat chocolate (I think I even had a takeaway so I didn't have to cook), watch rubbish on TV. You get the picture, I'm sure! Most importantly I went to bed knowing that tomorrow was going to be a new day and I needed to wipe the slate clean of the day's events. Needless to say the day after was a better day.

Keep your pecker up. It will pass.

Best wishes

Harriet

[Jacqui-A in reply to HarryB]

You have such encouraging words, sorry to hear you fell a couple of times I hope you had help getting up.

[Litty in reply to Jacqui-A]

Chocolate is always good idea x

[Jacqui-A in reply to Litty]

I understand it has to be dark chocolate

[Litty in reply to Jacqui-A]

That is healthy option but only do milk or white xx

[pinjem]

I am impressed by your resilience. Keep on, keeping on!

[Brommie]

Hi Maridale, we all have down days and this forum is read by lots of people that can really appreciate the emotional impact that these days have. I haven’t had the courage to go out on my own for several years so you should feel really proud that you are still independent. I purchased a four wheeled shopper about two years ago and for me it has been a real confidence-giver, perhaps it might be worth giving one a try. xx

[benning]

We all have good and bad days,recently my days have been better because after 20 years I have learned to cope ,things do get better,you have to put your pride to one side and do what's best for your body/others..

[ConantheLibrarian]

Hi Maridale.Sorry to hear about your experience but as others have said the bad memory will pass. I think it's a really good idea to keep a four-wheeled shopper in your car boot for days when you are feeling less confident or for when you have to deal with a difficult obstacle like a high kerb. Once when i moved into a new flat I had to walk down a sloping path and step off a high kerb every morning just to get to my car. On days when I felt less confident I took the shopping trolley with me to feel more stable and put it in the boot.

We all have our horror stories. 10 years ago I was going down an escalator at Milan airport. When I got to the bottom I forgot to let go of the moving rail and I fell over. The three people behind me also fell on top of me in a heap and I heard a woman shout in Italian, 'Oh My God, we've killed him!' In fact I wasn't hurt at all, but as you can imagine, it was rather embarassing1

[february]

Dear Maridale, People on this site, like myself, DO understand, you're NOT alone in your journey even though you feel that way! I've had ataxia for over 20 years, and just found out in 2017, it's due to Niemann Pick C disease. Although I use a cane/stick, I also use a light-weight rollator (keep a couple in the house, as well as one in my car). I can walk better and feel much more secure when using a rollator. Tomorrow will be a better day!!! My best to you..., ;o)

[Jacqui-A]

Thank you February for your kind words. I do have a rollator and like you feel a lot more confident with it.

[ddmagee1]

We are here for you! I, too, have those times, when I, like, lose my balance and fall. A couple years ago, I fell flat faced on the pavement in front of me, and had a concussion and blunt force trauma hematoma. At any rate Ataxia, makes me very wobbly at times, and I now have a cane that I use, that helps. I’ve also been diagnosed with Parkinson’s, which doesn’t help matters. It’s bad when one feels so alone, trying to cope with getting the legs to work right, and having balance, and, there are times that I do feel that most people just don’t have a clue, don’t really understand, and some are very judge mental. Seeing the neurologist 3 times a year, for a short time, doesn’t, at all, give the support needed to cope with the many daily ups and downs of living with Ataxia. I’m glad that we have this forum! Thanks for sharing. So, a cane and/or rollator should help you. Please be careful on inclines, and turning corners.

[Jacqui-A in reply to ddmagee1]

Thankfully I haven't fallen in the street unlike you, people see you with a stick and they still want to walk through you rather than round you. I went to the physio this morning and have been given two elbow crutches to try but to be honest I am better with one of something because my coordination is bad. I do have a

Rollator and walk a lot better with it.