how ya doing?

[olly]

been quiet for a few days ,just checking on how you all are.
me,i'm hunkydory..........usual problems but i dont like to dwell on things.
everyone still doing ok on there baclofen?
peter,how are you finding the pump? has it been adjusted and helping now?
jennifer, hope your still feeling better within yourself.
hey pz,not heard much from you lately. hope your ok.
to everyone else(will avoid names incase i miss someone out)hope your all doing as well as you can be..............have a good day.
take care.caroline

 

[johnnyliverpool]

well olly, now i know.....were i stand in your pecking order...............sob, sob.sob......johnnynobody..

 

[olly]

hey johnnynomates,i meant you also.........how could i ever forget you..........your unforgetable:lol:

 

[brayden722]

Hi caroline. Just started on baclofen about a week ago. Have not seen any difference as of yet. Hoping it does so I can still make trip to watch my son play football. Been trying to contact u a couple times but no response must b in same catagory as johnny. Take care. Brayden

 

[olly]

hi brayden,sorry i did get your visitors message today and looked in on your profile page...........was going to get round to sending a message back.........honest,sometimes i forget things.
a week is probably too soon to see any noticeable difference,it can take several weeks to 2-3mths before optimum benefit is felt.
what dosage are you on? are you still taking the other muscle relaxing meds as well?

does wi stand for wioming(sp) cowboy country? ranches?
i have always said if i did visit the usa it would not be nyc but the cowboy country or the deep south.
i love history and visiting historical places.......plus i love musicals like ........seven brides for seven brothers...........oklahoma.............and who can not forget calamity jane,just love doris day.
but my all time favourite is oliver twist...........yes i know thats old london.

take care.caroline

 

[hopingforcure]

Oh so Oliver well that makes sense. One of the kitties I rescued this summer (my favorite) and the only one I gave a name, was Oliver.. After you and your kitty. See how this forum just spreads all over...

 

[olly]

omgoodness:shock:,someone please shoot me before i totally loose my marbles.
sat watching "extreme makeover home edition" and i realised my mistake............well geography was never my best subject.
wy=wyoming,is it not and wi=wiscontant?:?..........and if it is wisconstant where the heck is that?
i am a natural brunette...........honest:razz:

yes h4c that is true............i am so very touched you named your kitty after my olly.......my heart is swelling with pride (((hugs)))

i think its bedtime..........need to rejuvinate the brain.

 

[brayden722]

Hi Caroline,

Thanks 4 the laughs. I was laughing after the first reply and laughing so hard after the second. Thank you, I needed that.

First of all, thank you 4 the info on the baclofen. The neuro started me on 30 mg per day and increasing 30 mg every 3 days. I take this now along with tizanidine and gabapentine. He is hoping 2 get me off of the tizanidine if the baclofen seems 2 be working.

I live in Wisconsin, the dairy state. I did grow up on a horse ranch with 22 horses and participated in local rodeos and parades. Wisconsin is better known 4 cheese and the green bay packers even though I am a new orleans saints fan.

Thanks 4 the replies. Look forward 2 hearing from u again. Brunette, huh? Haha

Brayden

 

[olly]

wisconsin,have heard of it but dont know were it is lol.
glad i made you laugh...........at my own expence lol.
i dont care much for citys,like rural places best..........i'm just a country bumpkin at heart.

30mg to start is a high dose and then to increase another 30 in a few days.
you may feel tired alot..........even a bit weaker for a short time.
i was on 60-70mg a day but gradually over the years decreased to 40,50/60 on a bad day.
if i take an extra dose for a few days when i am bad i can feel a big difference..........feel weaker that is.
you should see some benefit soon but it is a good idea to slowly wean off the other ones...........dont like the idea of you taking all those different types of muscle relaxers...........we dont want you going all floppy on us.

speak soon,take care.
caroline

 

[brayden722]

Hi Caroline,

Too late, already floppy and flippy.....lol. The neuro put me on the baclofen due to my hips and upper extremities being affected. He hopes that I will be able to get off the other muscle relaxers if it helps. I told him that there is no help for me....lol

Wisconsin is primarily a rural state. We are located in the upper midwest just south of the Canadian border. My dream is to ride horses one more time on trails in the Colorado mountains but I know that is a farfetched dream.

Thanks again for the smiles. Humor is what keeps me upbeat about this dreadful disease. Good thing I have I have awarped sense of humor.....lol

Have a good one

Brayden

 

[olly]

so you are now a member of the flippy floppy club :lol:...........could be worse clubs to be in.
horse riding in the colorado mountains sounds good.........though not been on a horse since my teens .........probabley end up with a bruised bottom to add to everything else.
just had a thunderstorm here,chucking it down in buckets.
had washing on the line and because i cant walk fast i got soaked:-(
oh well,thats me washed for the day.
take care.caroline

 

[stilljennifer]

Thank you for asking! After the two weeks from hell of new and exacerbated symptoms I am back to pacing myself and handling things ok. ...not great..but ok... Thankfully my counselor is now aware of what is going on as well and she strongly encouraged me to continue venting and sharing and being a part of this support forum. It's really hard for "healthy" people who are not caregivers to understand the frustrations. Honestly, I am just trying not to think about it most of the time! LOL!

 

[olly]

hi jennifer,glad your ok..........well,as well as you can be.
i hope your symptoms start to ease some real soon.

not heard from peter yet so will pm him and see if he's ok after his pump procedure.

take care.caroline

 

[Tokahfang]

I had a difficult opthamologist appointment this week. The gene that is mutated in me is one that is mutated in a different way in a type of HSP that can complicate with optic atrophy. I have had progressively more vision problems, and a new glasses perscription didn't help. I buckled down and went for a complete check at the opthamologist and he saw evidence of optic atrophy consistent with a hereditary cause. He offered the name and number of a neuro-opthamologist who can tell me more about exactly what my optic nerve is and isn't doing, but clarified that treatment isn't really an option, it would be purely informational. Hereditary style optic atrophy is kind of a dice roll, it can be asymptomatic or cause blindness or anything in between. It can relapse and remit in waves, or slowly progress, or do a "3 steps forward, 2 steps back" dance. I had a really rough tussle with that emotionally yesterday. I knew it was a possibility, but between having it confirmed and how little they know about it, it was a blow. I think I was hoping that it would be something correctable, psychogenic, or that there would be more option to deal with it than the internet had advertised. I trust God, and I know rationally that my sight wasn't better before I had the appointment, but it is definitely harder knowing, though I am glad I do. I think I am beginning to tire of having rare diseases, can I sign into a new program?

 

[brayden722]

so you are now a member of the flippy floppy club :lol:...........could be worse clubs to be in.
horse riding in the colorado mountains sounds good.........though not been on a horse since my teens .........probabley end up with a bruised bottom to add to everything else.
just had a thunderstorm here,chucking it down in buckets.
had washing on the line and because i cant walk fast i got soaked:-(
oh well,thats me washed for the day.
take care.caroline

I know there are worse clubs to be in and I think people have suggested as such but I don't think it would be appropriate to mention them

Hope you brought out your soap and shampoo with you when you got caught in the rain. At least you don't have to wash the clothes you were wearing....lol. I think right now a bruised butt would be a welcome ache compared to the rest of these syptoms especially riding a horse one more time.

Keep thinking positive and never lose your sense of humor. That is one thing this disease will not take from me

Stay dry.....lol

Brayden