Disappointed with our first visit to the ALS clinic

[taratune]

My brother had his first visit to the "multidisciplinary" ALS clinic yesterday. There was no Physical therapist, No Occupational therapist AND no Social Worker. Just a rude nurse, a doctor who offered nothing and a Respiratory Therapist who took a baseline reading of his breathing functions and said he was 107 % of expected....(at least this was good news.) They gave him a slip to come back to the ALS clinic in late July.

My brother is really having trouble getting around and we were really looking to talking to the PT for some mobility advise. My brother has been walking with a cane that he got from my father...but he has been getting pretty weak in one foot and can't feel it anymore. He has been pretty unsteady from time to time. Just after we left the hospital my brother fell on the sidewalk before we could get to the parking lot. My brother could not get back up.....even with my help. The security guard came over but we could hear the person on the other side of his walky talky telling him not to help pick him up.......that if my brother couldn't get up to call 911. Luckily my brother was ok he just couldn't get up. Well I had seen a wheelchair inside the entry and went to get it. Another security guard arrived and helped get my brother into the wheelchair and then to the car.

Today I made an appointment for my brother to be evaluated by a Physical Therapist at another hospital near where he lives. I hope they are familiar with ALS and will know how to help us. I was really hoping for more expertise at the ALS clinic.....but it seemed the whole trip was mostly just a waste of time. I would be interested in hearing from others about the medical care their PALS is getting and where we might find better care for my brother.....especially mobility advise. We live in San Diego.

Thanks so much,
Tara

 

[brooksea]

Tara,

I'm so very sorry y'all had a horrible visit at your ALS Clinic! Have you gotten with your local ALSA? They should be able to provide loaner items for help with mobility and advice regarding the disease itself. They will come to your brother's home to evaluate his situation. I'm sure they would be able to direct y'all to a better clinic. I'm on the east coast and not familiar with California ALS clinics, but they are probably listed on the ALSA.org site for your area. If you choose another, you may want to find out the lead physician's name and research him a bit before going. We are lucky to have Emory Clinic in Atlanta with a wonderful healthcare team that is compassionate and willing to go the extra mile for their patients.

As for going to the PT near your brother's home, I would send him/her plenty of info regarding ALS or direct them to the ALSA web site to be sure they new what they are dealing with so you will not have wasted time and effort again.

Good luck Tara! Your brother is lucky to have you looking out for him!

 

[sharonca]

Tara - I also live in So. CA. I know there is a new and supposedly great ALS clinic at Cedars Sinai in LA funded by ALS org. And the clinic I go to at UCLA is funded by MDA. I have been very happy with my treatment. Every visit I see the neuro, RT, PT, ALS/MDA rep. I know it is a drive from San Diego but may be worth the drive.

Sharonca

 

[andyvaughn]

Tara, I live in So. California also. My husband is seen at the ALS comprehensive care center at Cedars Sinai. We have also seen, for a second opinion, Dr. Graves at UCLA. The same therapists work at both clinics. I can tell you from personal experience that we are very very happy with Cedars. Dr. Muthukumaran is a very compassionate and loving doctor, and Hope, her nurse, is very responsive and compassionate also. When Jim was diagnosed Dr. Abi, (what we call her for short) literally held us while we cried. She is very wonderful. You may find the drive worth it?

 

[taratune]

Better news today!

Thank you all for your supportive and helpful comments. LA would be well worth the trip and we will look into making it if needed. I am feeling more encouraged......Today I spoke with a kind person at the MDA office here in San Diego and she told me that they have a muscle clinic at Children's hospital here in San Diego that see's adults with ALS and other muscle problems. They have a social worker there that I know will be helpful as well as PT, OT and also a communication tech type person that is associated with United Cerebral Palsy. If/When my brother is unable to talk we may have extra challenges because my brother is autistic and does not read or write. My brother is very high functioning and many people do not know that he has a problem unless they are around him for awhile. Because of the autism epidemic health care people who work with children are usually much more aware of some of the differences that "people on the autism spectrum" have and are more understanding and sensitive to their needs. In many ways my brother is a big kid and I think that the folks at Children's will better understand how to help him. Has anyone else received services via an MDA clinic or at a Children's hospital? I guess if it doesn't work out there is still LA and we may check that out for at least another opinion even if this new clinic works out great.

Thanks again for all your help and support,
Tara

 

[sharonca]

Tara - there are numerous posts on the forum by a family dealing with autism and ALS. The man with ALS (and autism) is Wally. I think you would be very interested in their posts.

Sharonca

 

[PDaddy]

ALSA also has clinics at Loma Linda, which is closer to San Diego than LA, so that's an option. I attended the last clinic there and it was fully staffed by the therapists you'd expect. Also, the Dr was great!

 

[taratune]

need wheelchair and transport advise

Thank you so much for the support and ideas.

My brother is getting pretty wobbly and I fear we will be needing a wheelchair for him soon. I have heard that Medi-cal Medicare will only pay for a wheelchair for him once every so often. One source said 3 years another said 5 and yet another said 7 years.

Whatever the time frame I guess it is important to choose the wheelchair wisely with functioning difficulties in mind. We will also be needing a way to transport it. I am hoping to benefit from your experience here. What should I be thinking about? Any suggestions will be greatly appreciated.

Thanks in advance,
Tara
Sis of PAL

 

[MtPockets]

I would begin by checking with the MDA and ALS loaner programs. These links will get you started:
http://www.mda.org/equipment.html
http://www.alsa.org/
They have many items that they will loan out without charge to you.

Plan ahead for the worse. When considering a vehicle for transport, DO NOT get one with a lift on back. I did and regret it to this day. I should have spent a little more money and got one with a ramp to load the wheelchair inside the vehicle. Also check headroom clearance. I am 6 feet tall and have a problem finding a van that has enough headroom.

Wheelchairs come in various sizes, widths, weights, etc. You need to go to a showroom that has several models and find out what size you need.

I made a mistake on the first one I bought by getting an extra wide Ultra Light model. It would not go through most doors in a house. I do recommend the light weight models if you can get one. My wife has a bad back and when I was in a manual chair she would have to load and unload it.

Plan ahead for eventually going to a motorized chair. When getting one I recommend the electric controlled leg lifts, tilt feature, and a good quality air cell cushion.

You need one that you can sit in it all day most of the time and it is very easy on the backside.

 

[baker5131]

husband newly diagnosed

My name is Kimberly I'm 39 and my husband is 42. We live in Corpus Christi, Texas with our three children (Justin 19, Amanda 14 & James 9). We have been together since I was 14yrs old, will be married 21yrs this November. I've been ferverently combing the website and reading post after post looking for anything I can get: support, answers, hints etc. I'm so totally devasted by this news. My husband was diagnosed by a neuro doc 4-23-08(so this is al new to us). He said it was sporadic ALS. We don't know anymore specifics (as to whether its fast/slow progressing-which I learned from reading this site). He has lost 75% use of his left arm in 2months, fasciculations roaming to shoulders, right arm and legs now. It seemed to increase after we started Rilutek and Lithium. We go to San Antonio soon (I hope-they're still coordinating appointments) to see an ALS specialist and more testing. So I guess we aren't officially diagnosed til then? I have so much more to write but have to go to work (RN with pediatrics).

 

[kelly]

hello Kim

Hello Kim,
I am also 39 and my husband was diagnosed 2 years ago with bulbar onsel ALS. I understand the devastation that you are feeling. If you ever need to vent or chat, you can email me. Hang in there...take things day by day ...hour by hour...and minute by minute if needed. Fondly, KR

 

[andyvaughn]

Hi Kimberly
I am sorry to hear of your husband's diagnosis. This disease is very heartbreaking. My husband was diagnosed 2/20/08, with bulbar onset, that has rapidly advanced to his limbs. I promise you that the first month after the diagnosis was the absolute hardest, it is starting to get a tiny bit less painful now. Sounds like we are in similar life stages, I am 38, almost 39, and we have a 18 and 13 year old.
As far as increased fasciculations, my husband also seemed to have them at first on lithium, and many patients on the patients like me forum/spreadsheets have also reported the same.
I can tell you that his progression is finally starting to slow, after 2 months on lithium/rilutek. I hope that your husband experiences the same...
Andrea - wife of Pals Jim

 

[baker5131]

Thanks

Thanks for the reply. I'm learning that I'm not the only one out there dealing with this and its a comfort to read entries. Thanks again, Kimberly

 

[MtPockets]

I'm so sorry to hear of your husbands Dx. I know this is the most difficult time for you and your family. I know it is hard to believe, but with time it will get somewhat easier. It is never the same after a Dx of ALS.

Most of us have learned to live one day at a time and live each day to it's fullest. If there are things you want to do as a family, now is the time to do them and enjoy what time you have together while your husband is somewhat mobile. Do not put off taking that special trip, etc. that you might have always wanted to do. Make some good memories now. Enjoy each other and life.

I regret having put off some things that we as a family had always wanted to do and now since I am in a wheelchair full time, it really limits our activities.

Please learn from our mistakes and trust God to give you the strength to make it through this.

 

[j5rj5r]

j5r

Hi Tara
I am the primary caregiver for my wife who has had ALS for 2 years.
On the wheelchair / transport issue: I put off getting a wheel chair and came to regret it. It took a couple of months to get the chair after we started the process. Then the chair we got is too high off the floor which makes transfers difficult. We are using a loaner from ALS of Ga. most of the time. We only use the new chair when she is going to be in it for an extended period of time because it is more comfortable. We tried the air cushion and it did not work well for my wife but may be fine for your brother. The loaner did not have thigh supports. This was no problem at first but as the disease progressed it became a big issue.
If you can gain access to an ALS loaner closet you could try out different chairs to see what features you need. The loaner closet has been invaluable to us. It lets you try something out before you go out and spend a small fortune just to find it don't do the job you thought it would. For transportation I bought a used full size van with a lift that loads from the side. I found it on craigslist for $6,000. It is old but in very good shape. I could have spent $40,000 for a van if I knew what lay ahead. I may need that $34,000 for something else she requires. There is a clearance issue with full size vans and the chair will not load with the seat back straight up but you can recline it to get through the door and it works fine.

James
In Ga.