Great news, Jenn! I'm glad for you!
Kat
----- Original Message -----
From: "Jennifer Zubko" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, April 10, 2002 10:49 PM
Subject: Appt. w/ Dr. Gillen (physiatrist)
>
> Hello Everyone,
>
> I just thought I would share some (tentatively happy), news for once. If =
> all goes well at my appointment with my general practitioner tomorrow, =
> at the Ontario Student Loan Offce, and at the Housing Office tomorrow =
> (with a prayer that I will get there being on 120 mg of morphine/day, =
> when all I want to do is sleep), things look promising for me being able =
> to stay in Ottawa for the summer and deal with the same physiatrist who =
> is helping me with my pain. He has started me on fentanyl patches to see =
> if they help with side effects/cut down on my oral morphine. If they =
> help, he will increase the size of patch, decrease amount of oral =
> medication---which is good, because I long to be on some sort of =
> medicine for my spasms/ what the Movement Disorders team at home called =
> dystomia-- at least in a letter to a third part and never to my face. If =
> it is what is causing m,y pain, then I deserve treatment for it, and in =
> a way I feel lucky to have failed their Intrathecal Baclofen testing =
> bwecause the therapist/nurse admitted that by doing it bylumbar =
> puncture, they can NEVER test for dystonia. However, the symptoms match =
> mine and I have written to the Vancouver Movement Disorders team. They =
> are supposedly the best in the world. Thank God my sister now lives in =
> Victoria.! Michael J. Fox is getting treatment in Vancouver for his =
> Parkinson's. I am going to ask tomorrow to be sent to the Montreal =
> Neurological Institute for dystonia diagnosis/treatment. I need options =
> for pain and dystonia management--- and I don't think the London team =
> should have dumped me when giving me a totally new diagnosis. I asked =
> for (and got) a referral to Toronto, but haver learned over Easter that =
> neither my aunt nor grandparents are healthy, so could not host me if it =
> was decided surgery was warranted at all, or even if I needed to return =
> for treatment.
>
> SOME OF THE GREAT NEWS IS THAT DR. GILLEN DOES DO TRIGGER POINT =
> INJECTIONS! But, he found 12-18 potential spots for injection, including =
> hamstrings/adductors. I don't mind needles but was not expecting this =
> many! I don'thave fibromyAlgia or anything. however, because everything =
> was pretty much in the same area. TRIGGER POINT INJECTIONS HURT! But my =
> prayer is that he will be gentle. He has said he will do them every week =
> and a half if necessary, to start with.
>
> I had to giggle: Most of you know that while in Toronto over Easter, I =
> went to an Orthotist specializing in CP, along w/ a prescription from =
> Dr. Gillen for new braces because I told him how much my present omes =
> have always hurt. The Orthotist recommended rear entry anti-crouch =
> braces with a hinge that allows minimal plantarflextion, with a little =
> soft "bootie" inside made of softer plastic for more medial/lateral =
> stability. I found the bootie ever so comfortable, and it means my =
> ankles will NEVER touch the hinges.
> I had to laugh because today Dr. Gillen finally had time to do full =
> evaluation, and watched me walk barefoot and with my presemt AFOs... =
> When I was finished, he said, "And your present braces help you how =
> other than hurting you"? Something I have been tryingto impress upon =
> more than one physician for a long time. I showed him a picture =
> something like the new design, and he was at least hopeful they would =
> help. I AM EXCITEDC ABOUT BETTER FITTING BRACES AND THE BUTTERFLY =
> PATTERN WITH MAUVE/WHITE BACKGROUND I HAVE CHOSEN. If the strike for the =
> Assistive Devices Program GOES ON MUCJH LONGER, I will put them through =
> my Mom's insurance. I am alsdo excited because I AM TO BE THE FIRST =
> ADULT IN NORTH AMERICA to try the SWASH ORTHOSIS- Standing, Walking, =
> Sitting Hip Orthosis. They are doing trials in Spain, but I sent the =
> company a video and they are shipping parts from Spain to the US. Then a =
> representative from the US will come to Ontario and fit me. The brace =
> will be free, and they will modify it as they improve their =
> prototype.Ironically, I have been asking about it for a few years as =
> well, and it is something the orthotist in Toronto recommended without =
> my asking about it.
>
> Now I ask for your prayers and strength as I attend my next =
> appointments. I have to get deferrals on some papers which are =
> impossible to write in pain/on morphine. Am planning at the moment to =
> use the month of May to finish papers, take June off and focus on =
> pain/spassticity/dystonia management, and then take a half credit course =
> on videotape towards my degree from JULY-AUGUST. THIS WAY, IF I HAVE AN =
> APPT., I WILL NOT MISS CLASS.
>
> Say a few prayers for me that the monetary/housing issues work out. At =
> least I won't need to go back and forth between physicians. MAYBE THE =
> TRIGGER POINT INJECTIONS WON'T HURT AS MUCH ON MORPHINE/FENTANYL!
> I had such a good appointment that I HAD TO SHARE-- And Dr. Gillen has =
> at least conceded that a pump for pain meds at least may need to be an =
> option sooner than later. He does not usually put patients on patches =
> this quickly, but I react so harshly to anything given by mouth.
>
> Just wanted to share a bit of good news after my last few very bumpy =
> weeks. Please pray that God will give me the strength to stay here alone =
> in the summer, and the money and permission from the Housing office I =
> will need to do it. I am so GRATEFUL THAT I FEEL LIKE DR. GILLEN CAN =
> RELATE TO ME.... BY THE WAY, MY APPT. FOR INJECTIONS IS ON A SATURDAY-- =
> HOW WONDERFUL OF HIM IS THAT?? And he does not care how many times I =
> CALL HIM, AND ALWAYS ANSWERS, UNLIKE MY ITB TEAM IN LONDON.
> At least there are still some people in the world who let patients =
> listen to their own bodies.
>
> Thats it for now. I thought I would share some good news. I just hope =
> and pray the rest of this plan unfolds as well as this appt. did today.
> Please say some prayers.
> Jenn
>
>
>
>
>
>
>
>
> ------=_NextPart_001_0049_01C1E0E2.04F54C60
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> <P></P>
> <DIV> </DIV>
> <P></P>
> <CENTER> Hello Everyone,</CENTER>
> <CENTER> </CENTER>
> <CENTER>I just thought I would share some (tentatively happy), news for =
> once. If=20
> all goes well at my appointment with my general practitioner =
> tomorrow, at=20
> the Ontario Student Loan Offce, and at the Housing Office tomorrow (with =
> a=20
> prayer that I will get there being on 120 mg of morphine/day, when all I =
> want to=20
> do is sleep), things look promising for me being able to stay in Ottawa =
> for the=20
> summer and deal with the same physiatrist who is helping me with my =
> pain. He has=20
> started me on fentanyl patches to see if they help with side effects/cut =
> down on=20
> my oral morphine. If they help, he will increase the size of patch, =
> decrease=20
> amount of oral medication---which is good, because I long to be on some =
> sort of=20
> medicine for my spasms/ what the Movement Disorders team at home called=20
> dystomia-- at least in a letter to a third part and never to my face. If =
> it is=20
> what is causing m,y pain, then I deserve treatment for it, and in a way =
> I feel=20
> lucky to have failed their Intrathecal Baclofen testing bwecause the=20
> therapist/nurse admitted that by doing it bylumbar puncture, they can =
> NEVER test=20
> for dystonia. However, the symptoms match mine and I have written to the =
>
> Vancouver Movement Disorders team. They are supposedly the best in the =
> world.=20
> Thank God my sister now lives in Victoria.! Michael J. Fox is getting =
> treatment=20
> in Vancouver for his Parkinson's. I am going to ask tomorrow to be sent =
> to the=20
> Montreal Neurological Institute for dystonia diagnosis/treatment. I need =
> options=20
> for pain and dystonia management--- and I don't think the London team =
> should=20
> have dumped me when giving me a totally new diagnosis. I asked for (and =
> got) a=20
> referral to Toronto, but haver learned over Easter that neither my =
> aunt nor=20
> grandparents are healthy, so could not host me if it was decided surgery =
> was=20
> warranted at all, or even if I needed to return for treatment.</CENTER>
> <CENTER> </CENTER>
> <CENTER>SOME OF THE GREAT NEWS IS THAT DR. GILLEN DOES DO TRIGGER POINT=20
> INJECTIONS! But, he found 12-18 potential spots for injection, including =
>
> hamstrings/adductors. I don't mind needles but was not expecting this =
> many!=20
> I don'thave fibromyAlgia or anything. however, because everything =
> was=20
> pretty much in the same area. TRIGGER POINT INJECTIONS HURT! But my =
> prayer=20
> is that he will be gentle. He has said he will do them every week =
> and a=20
> half if necessary, to start with.</CENTER>
> <CENTER> </CENTER>
> <CENTER>I had to giggle: Most of you know that while in Toronto over =
> Easter, I=20
> went to an Orthotist specializing in CP, along w/ a prescription =
> from Dr.=20
> Gillen for new braces because I told him how much my present omes have =
> always=20
> hurt. The Orthotist recommended rear entry anti-crouch braces with a =
> hinge that=20
> allows minimal plantarflextion, with a little soft "bootie" inside =
> made of=20
> softer plastic for more medial/lateral stability. I found the =
> bootie ever=20
> so comfortable, and it means my ankles will NEVER =
> touch the=20
> hinges.</CENTER>
> <CENTER>I had to laugh because today Dr. Gillen finally had time to do =
> full=20
> evaluation, and watched me walk barefoot and with my presemt =
> AFOs...=20
> When I was finished, he said, "And your present braces help you how =
> other than=20
> hurting you"? Something I have been tryingto impress upon more than one=20
> physician for a long time. I showed him a picture something like the new =
> design,=20
> and he was at least hopeful they would help. I AM EXCITEDC ABOUT BETTER =
> FITTING=20
> BRACES AND THE BUTTERFLY PATTERN WITH MAUVE/WHITE BACKGROUND I HAVE =
> CHOSEN. If=20
> the strike for the Assistive Devices Program GOES ON =
> MUCJH=20
> LONGER, I will put them through my Mom's insurance. I am alsdo =
> excited=20
> because I AM TO BE THE FIRST ADULT IN NORTH AMERICA to try the SWASH =
> ORTHOSIS-=20
> Standing, Walking, Sitting Hip Orthosis. They are doing trials in=20
> Spain, but I sent the company a video and they are shipping parts =
> from=20
> Spain to the US. Then a representative from the US will come to Ontario =
> and fit=20
> me. The brace will be free, and they will modify it as they improve =
> their=20
> prototype.Ironically, I have been asking about it for a few years as =
> well, and=20
> it is something the orthotist in Toronto recommended without my asking =
> about=20
> it.</CENTER>
> <CENTER> </CENTER>
> <CENTER>Now I ask for your prayers and strength as I attend my next=20
> appointments. I have to get deferrals on some papers which are =
> impossible to=20
> write in pain/on morphine. Am planning at the moment to use the month of =
> May to=20
> finish papers, take June off and focus on =
> pain/spassticity/dystonia=20
> management, and then take a half credit course on videotape towards my =
> degree=20
> from JULY-AUGUST. THIS WAY, IF I HAVE AN APPT., I WILL NOT MISS =
> CLASS.</CENTER>
> <CENTER> </CENTER>
> <CENTER>Say a few prayers for me that the monetary/housing issues work =
> out. At=20
> least I won't need to go back and forth between physicians. MAYBE THE =
> TRIGGER=20
> POINT INJECTIONS WON'T HURT AS MUCH ON MORPHINE/FENTANYL!</CENTER>
> <CENTER>I had such a good appointment that I HAD TO SHARE-- And Dr. =
> Gillen has=20
> at least conceded that a pump for pain meds at least may need to be an =
> option=20
> sooner than later. He does not usually put patients on patches this =
> quickly, but=20
> I react so harshly to anything given by mouth.</CENTER>
> <CENTER> </CENTER>
> <CENTER>Just wanted to share a bit of good news after my last few very =
> bumpy=20
> weeks. Please pray that God will give me the strength to stay here alone =
> in the=20
> summer, and the money and permission from the Housing office I =
> will need=20
> to do it. I am so GRATEFUL THAT I FEEL LIKE DR. GILLEN CAN RELATE TO =
> ME.... BY=20
> THE WAY, MY APPT. FOR INJECTIONS IS ON A SATURDAY-- HOW WONDERFUL OF HIM =
> IS=20
> THAT?? And he does not care how many times I CALL HIM, AND ALWAYS =
> ANSWERS,=20
> UNLIKE MY ITB TEAM IN LONDON.</CENTER>
> <CENTER>At least there are still some people in the world who let =
> patients=20
> listen to their own bodies.</CENTER>
> <CENTER> </CENTER>
> <CENTER>Thats it for now. I thought I would share some good news. =
> I just=20
> hope and pray the rest of this plan unfolds as well as this appt. did=20
> today.</CENTER>
> <CENTER>Please say some prayers.</CENTER>
> <CENTER>Jenn</CENTER>
> <CENTER> </CENTER>
> <CENTER> </CENTER>
> <CENTER> </CENTER>
> <CENTER> </CENTER>
> <CENTER> </CENTER>
> <CENTER> </CENTER>
> <CENTER><IMG =
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> ------=_NextPart_000_0048_01C1E0E2.04F54C60--
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