Praying to die

[Bobby1124]

I am dizzy all the time, I cannot live my life, waiting to die on my bed. Hoping a sponsor for stem cell treatments.

[Carolss]

What keeps u from killing yourself?

[Bobby1124 in reply to Carolss]

Coz im like a living dead, wheelchair bound in less than a year only.

[Farooqji]

what's your age and when were you diagnosed

[Bobby1124 in reply to Farooqji]

42 only and diagnosed on june 2018

[Farooqji in reply to Bobby1124]

Sorry for that. Actually stem cell clinics doing business today are frauds. They lure the patients by claiming to treat everything. Don't fall trap to such claims. You may have some other hidden ailment which may have caused the rapid decline. Try to consult a general physician in addition to neurologist

[neta]

At least you r honest and say what you feel which is more than what some admit to But still u r here. So get out of that bed! At least sit in a chair or have a walk outdoors with your chair...xN

[Piero]

I really hope that I don't sound patronizing Bobby, but its possible that you are depressed to a degree where that condition needs treatment. I can't give you any pointers in that direction as I've never explored that route, though I suspect that there are occasions in the past when I should have. Perhaps after hopefully shifting the depression, you could eventually realise that there is still a deal of joy to be experienced from just being alive. The joy may now inevitably be that of the passive spectator and experienced from the park bench, the window, from friends, family, the radio, the TV, no longer the physically active participant, but the joy is still there in abundance ...... And by the way, we're all, afflicted and otherwise, waiting for the grim reaper.

[anihol]

I'm 44 and have had a fast decline too no longer working or able to drive. I have vertigo which doesn't allow me to be upright so manage with an electric wheelchair and mobility scooter to get around. I have a NIPPV Machine at night for my breathing and now a hearing aid for my right ear. I had depression and anxiety and decided that I wasn't going to carry on this way so.....I started counselling. Got myself a pooch, she is the best thing I have ever done. She's my best friend and gives me a reason to go out every day and meet new people. And I make the most of a activities I can join in with my husband and daughter. This is what keeps me strong, so I can't go ice skating with them anymore but I can take the pictures and get the hot chocolate ready for when they come off. And I can go and enjoy a lovely pub lunch with them too. So grateful for that, it could have been so much worse xx

[suzie44na]

Hi Bobby1124, I can feel down I lot, so I know how it can feel. I have dizziness a lot of the time. If I was you I would ask your doctor for something for dizziness there are a few different types. My dizziness is worse when my tremors are worse. I take diazepam 2mg so low dose, when I feel worse or stressed, this does really help me, it helps with both. I only take one a day when need to, not every day, as I don’t want to get hooked on them or my body get used to them then they might not work as good, but can take up to three a day my doctor said. Try to move around a bit because lying down all the time can make you more dizzy and sit up in bed when not sleeping. Try to do things you like doing, I try to do my hobbies when feeling down it does really help, it takes your mind off things. I like to paint, do jigsaw puzzles, play computer games. I have also rescued a cat, she is a gentle loving cat and real good company. Know you are not alone, wishing you all the best.

Suzie

[Carolss in reply to suzie44na]

My beautiful cat died 3 months ago. I love being a cat mama. I'm afraid to get another for fear of dying 1st...then what...nobody would love her like i do. I have thought of getting an older cat but either of us dying is hard to think about. Either wsy one of us would be left alone. I am 80yrs young and have had symptoms for several years but diagnosed a couple of yrs ago. All my blood tests came back normal, but the MRI doesn't lie

[suzie44na in reply to Carolss]

Sorry you lost your cat, very sad. I rescued my Mimi when her owner passed away and I truly love this cat. If you love having a cat and can look after one then get one, we all only live once, this is how I see it. Mimi was five and a half when I rescued her. She is very gentle and loving and company. We rescued each other I think.

Best wishes

Suzie

[Legs-alive]

A reply by Harriet who is one of the admins on this page, also a gp & ataxia sufferer to someone who enquired about stem cell treatment- in my opinion the reply is absolutely spot on!

I thought you would find it helpful to read Ataxia UK's position statement on Stem Cell Therapy -

'We believe that stem cell therapy offers significant hope for future treatment for the ataxias. Ataxia UK fully supports ethical research into stem cells in the UK and has actively sought to encourage researchers in this field. We have awarded a number of grants to study their potential as future treatments for the ataxias; the first step in bringing stem cell-based therapies for the ataxias to clinical trials.

We believe that any treatment should be offered on the basis of the results of rigorous trials in patients that assess both the risks and benefits of the intervention. Currently, clinical work with stem cells is at a very early stage. While possible benefits have been highly publicised in the press, there have been no clinical trials proving the effectiveness of stem cell therapy for Friedreich’s ataxia or any of the other ataxias. Nor have any of the potential risks been fully evaluated. Many countries are now tightening their regulations to prevent unproven stem cell products from being offered as therapies in clinics.

Anyone thinking of having stem cell therapy might like to consider as a first step consulting with their neurologist to discuss the following:

• Whether it is possible to obtain a fuller assessment of their condition

• The source of the stem cells being used, whether adult or embryo, and how this source is monitored for quality and purity

• The possibility of mid- to longer term effects of treatment which, while not formally studied, may include an increased risk of cancers and serious infections

• The possible risk of contamination, including possible infection with HIV, hepatitis or other diseases associated with the transfer of bodily fluids

• The treatment of any donors from whom the stem cells are harvested i.e. whether donors are receiving payment and whether donors are treated fairly.

We would strongly advise anyone deciding to pursue stem cell therapy to get a full clinical assessment from a specialist neurologist with an interest in ataxia before, during and after any treatment so that any potential improvements and/or safety concerns can be accurately measured and the outcomes recorded to allow others to benefit from their experiences.

'

[madbpm]

Don't, I have had stem cells in China & Costa Rica.it didn't work for me but it can work

[Veteran250 in reply to madbpm]

Bobby,

I am a Military Veteran, aged 76, and in a wheelchair with Ataxia and other medical problems, and yes, I wanted to die sometimes.

I used to do backpacking, camping, rambleling etc etc...... I have gone from using a walking stick, wheelchair and electric wheelchair...... I have decided that I’m not going to let my medical problems(too numerous to mention) bring me down.

I went though some s#%t during my Military career, and later in life with all of my medical problems..... now as a Military Veteran, I join other local Veterans to go on parade on special occasions like Rememberence Sunday and other such days......I served Queen and Country, was proud to do so, and would do it all again were I able too.... but Ataxia has got the better of me, but it will never get me down!

Now compared to me, you are a youngster, put all of your medical problems to the back of your mind and forget them, thats what I do, its always there, but I’m going to get on and enjoy the rest of my life as much as I can, who knows how much time I have left?

Bobby, you have to believe in yourself, think positive, you are not alone in this illness.... we, your fellow Ataxians know how you are feeling

You can get through this Bobby.

Good luck. 😀🌞👏👏👏👍